And Then

You find out you are pregnant. You begin planning. You plan not only how the nursery will look, what outfit they will wear home from the hospital, you also have an image of how it will all go in your mind. You probably even let your mind drift off to the future, what they may become, what they may look like. It seems like a logical way of thinking.

And Then

You get a diagnosis of Down syndrome. Now what?  That logical way of thinking becomes a distant memory. You fret and you research and you torment yourself. You think about what could I have done differently. You wonder if your child will ever live up to that expectation you had planned in your head. You grieve the loss of this child you thought you would have and look to the future in fear.

And Then

Your baby is born. Your new love is placed in your arms and everything seems so right. She is just
like any other baby. She has a cute button nose, she squirms and coos and sucks a little. Her beautiful almond shaped eyes complete this masterpiece that you are holding. Any fears or insecurities melt away. You are completely in love with your child, the one you fretted about, the one you questioned. The one that seemed to stir so much controversy over an extra chromosome. Perfect. Love. Cuddles. Life is good.

As you continue to walk your journey there are different things that come up. Her peers are all starting to roll, sit up, crawl, walk. Your precious baby seems to be so far behind.

And Then

You realize that it doesn't really matter. You realize that it is okay to slow down and enjoy the moment. You don't have to baby proof the house just let, you get to enjoy that baby stage just a little longer. After all, everyone says they grow up too fast and you have been given the precious gift of extra time. While your baby maybe needs a little extra help to accomplish some of these "common" tasks, you begin to learn just what we all take for granted. You understand how all of the muscles have to work together, how motor planning has to happen, and how much strength it takes to roll over.

Your character and understanding starts to build. You start to learn and become a different person. This little gift you were given opens your eyes and changes you. You look at your other kids differently, you parent differently, you look at the world in a whole new way. This fear that seemed to strangle you at the beginning is now turning into the greatest love story ever. You feel like you want to shout from the mountain tops about what a blessing that extra chromosome is. You begin to wonder why there is so much doom and gloom around a Down syndrome diagnosis.

You realize that there are more ways to do things than how you always have been. Communication seems to be the next milestone. While your little one is scooting and just starting to get into things, their peers are running and talking and sassing back to their parents. You start to feel lonely because you seem to think your child is so delayed.

And Then

Your child looks into your eyes and communicates a thousand things with you, in just one look. A look that maybe one of your other children have given to you, but you ignored. Because you don't have the luxury of them sassing back to you, you think out of the box and find a different way. Sing language becomes second nature to you. You break down words to hear every syllable.  You call and go on when they utter a sound. You get wrapped up in the excitement of every little step they make. You realize you communicate more with your non-verbal child than you do with your verbal children.

You become an expert in finding other ways, looking outside the box, turning every opportunity into
a learning experience for your child. You find the joy of being an active parent. While it is hard and exhausting. Sometimes lonely and isolating, your child walks up to you and gives you a hug. That low tone allows your child to wrap their entire body around you giving you the hardest most loving hug. And the they pull away for just a second and they smile. Their smile is so big and so bright it melts your heart. You feel like you are going to explode with love.

And Then

Someone says an ignorant comment to you. Someone reminds you what society says about your child. Uneducated and inexperience is talking. The fear, remember the one that you felt before you knew what Down syndrome felt like?  The research and the statistics try and the label, try to describe my child, but Down syndrome is not something you describe it is something that must be experienced and felt. Down syndrome has some stereotypes that just aren't true. And what if they are slow or can't keep the pace of a National Honor society student?  That means that they have something different,
something that couldn't be measured by a test, but something that must be experienced.

You understand that we all have something different to give. Some give their smarts while others give their smile. Both are important, both have a place.  One is not more important than the other, they are just different. One does not have more to offer and one does not have less, just something different.

And Then

You realize just how special the gift of Down syndrome is. Different, yes. Slow, yes. Smart, yes. Beautiful, yes. Stubborn, yes. Capable, yes. Determined, yes. Loving, yes. Emotional, yes.

The journey is filled with many different And Then moments. We work ourselves up, we compare to others, we set false expectations, we sometimes forget that not everyone has the privilege to experience Down syndrome. But often times when we can find the And Then moment we realize we are right where we are suppose to be. Down syndrome is only a label, it does not describe anything and it is an unique as the individual.

Don't Take That Away

A typical day for me requires me to get up extra early in order to get a couple of minutes for myself.  I stumble down the stairs, take a deep breath as I hop on my bike.  I usually get about 20 minutes before I hear the pitter patter of tiny feet waking up for the day.  Otherwise, I have to watch the time to make sure that my husband gets up in time to leave for work.  But for that 20 minutes I prepare myself for whatever may come my way during the day.

I walk up the stairs feeling refreshed and ready to start the day.  I usually am greeted at the top of the stairs by tiny eyes, a thumbs up and a request for milk.  I swoop her up and turn on the coffee machine.  I begin to help my husband get ready for the day as another sleepy set of eyes walk down the stairs.  The littlest one is whining that she wants to be rocked.  This is a special time for us and I want to make that happen as I want to serve my husband by helping him get ready too.

I sit down in the chair and rock her and rock her.  Sometimes we read, sometimes we play the I Pad.  Sometimes we just watch the fire and rock.  Sometimes she falls back asleep.  Sometimes she is sick and just wants mom.  The other girl is now awake and she wants to snuggle too.  The day has started and mom still feels like she can tackle any problem that may come.

Once we say bye to dad, we have to start our morning routine.  Usually, within several minutes, I feel defeated.  I struggle to get Lydia to use her shake vest.  As soon as I have wrestled her to the ground and I manage to get her locked into her vest, we start treatment.  Like clockwork she immediately says she has to go potty.  I grumble, but I unhook her and she runs.

I chase.  She does not like her vest, she does not like the treatment.  She is smart and knows that she can get out of the vest when she says that she has to go potty.  I make her go.  She fights me.  I am trying to keep the other girls on track getting ready for school.  I am exhausted.  It is only 6:00 AM.

This is just the morning.  The day is long and we haven't reached more than two hours of awake time.  What else do I have to look forward to today?  I get to do another treatment for her, I get to give her medicine, I get to talk to the insurance company, I get to drive her to another doctor's appointment, I get to write more goals for school, I get to complete a packet for continuing her insurance.  This is what I get to look forward to for the day.

My mind drifts back to days before Lydia.  I was busy with just about everything.  I had the schedule to volunteer, meet a friend for lunch, go shopping.  I had a chance to do more of what I pleased.  I did not have a constant worry on my hands.  My life did not seem to change near as much as it does today.  My friends and family seemed to understand me better.  My relationships seemed to be meaningful and I had more conversations with people and not just medical and insurance folks.

I understand that you may think that you are helping me by not "burdening me" with including me in planning this or volunteering for that, but you really are taking away the one thing that I am looking forward to.  I understand that my life seems busy and it seems like I am preoccupied, but I seemed to have buried myself in my child's issues because I have slowly been removed from committees and other opportunities as a way of helping me.  I seem to have become isolated because people feel I am too busy.  The problem is, no one has asked me.   

This is my life.  This is my daughter.  She has medical issues.  She has Down syndrome.  Sometimes it is very consuming and sometimes it may interrupt me from completing something I signed up for.  But I promise you, these opportunities are very important to me.  I promise you that I will give it my all because it will be the one thing that I can look forward to, the one thing that can take my mind off of something other than her medical issues, insurance, and appointments.

I also know that there are ways to do things unconventionally.  I mean that instead of having the meeting at school, can we meet at our home.  Instead of running errands by myself, can you come with me so I can just run in by myself and you stay in the car with Lydia?  Can you come and sit and rock her while I make the phone calls?  Will you be able to watch her while I work on something?  Would you be willing to let Lydia come with and I will give you all of my time? 

If there is one thing that I have learned about raising Lydia, is that there is always a way.  We as a society love to do things in a cookie cutter manner.  However, she has taught me how to reach outside of that box and to do things in another way.  And if you allow yourself to do that, you too will be blessed in a whole new way.

Please don't take that task away from me because you think it is a burden to me.  The truth is, that task allows me to feel like I belong somewhere.  That task allows me to look forward to something other than what I do every day.  That task allows me to push through the routine of each day to know that I get included in something else.

You don't have to understand the path I am walking, you don't have to know what I am going through.  But support me as I say I need to do this, I need to volunteer, I need to be involved.  Please don't be scared of what I am going through, please don't think these things are a burden.  This is my path and I need this.  I have realized her health is not going to change so I must adjust to our situation.  Please don't take this away from me. 

Thanks for saying that's retarded

A teacher's at the copier, in a hurry. She is trying her best but time is not on her side. She is rushed because how could she have forgotten about Veteran's day. Embarrassed as another teacher looks on, she quickly says "I know it looks retarded, but I had to have something for my kids to do."

I over hear this comment and that growing knot in my stomach grows, my hands clinch, and I feel anger burn deeply in my soul. I HATE that word. I repeat to myself, over and over, do you even know what you are saying?  I start to contiplate in my mind if I should politely go and correct what she said. After all, I realize she was to being harmful, I understand what she was saying. But if another student walks by and hears, does that validate for that student that it's ok to use that word?

I pause for a second. Lydia's sweet face appears in my head. She is not ugly or unfit. Her beautiful almond eyes twinkle with joy, her ever so larger bridge of heroes hold her beautiful purple glasses just so.  She tongue quickly pops out of her cute mouth to make you smile. Her blonde hair curls gently at the end of her fine hair. Her smile captures your heart and you are hooked. She beautiful.

Thank you to the teacher in the copier room that reminded me exactly how beautiful my child is. That  rushed book that'd you were putting together was not retrarded at all. That boom did not have a delay and was not held back in progress, development, or accomplishment (Websters definition of retard). That book may have been sloppy or not what you intended, but then again I am sure that you did not intend to use the word retard.

Thank you because you reminded me that I don't need to get angry with that word. While retard may be the diagnosis of my child, it certainly does not describe her. Actually, you allowed me to be reminded again of how beautiful my daughter is.  Retard cannot describe something ugly or rushed, something unintended. It simply means delayed.

To the kid in the hallway who looked at his friend and said that was retarded. Your friend was acting inappropriately. He was not delayed or being held back in his process, he was just making bad choices. I am sure you did not mean to slow him down or set him back.

However, you reminded me just how proud I am of Lydia. You reminded me that she often makes good decisions. You reminded me that she is kind to most people. You reminded me how much fun she is to be around. You also reminded me, even though she is a retard (she is slow and has developmental delays) she does not act like you or your friend. She is not obnoxious and she does have respect for others.

I am sure you did not mean to use the word retard. I am sure that you would have liked to use a word that would better explain how your friend was acting. Maybe he was obnoxious or rude or disrespectful. Our words are very important and I am sure if you would understood what you were saying, you would have chose a word that more accurately described your friend.

See when we understand the words we use and how to use them, we don't tend to offend as many people. Even the word dumb means a person that is unable to speak (the North American meaning is unintelligent). I get that these days we often use the North American definition of that word. But it is important to really educate yourself and know what you are saying.

Not only have these people reminded me that the "common day" use of retard does not define my daughter. The Webster's definition of retard tells you something about her, she is slow or delayed; but agai does not define her. I realize that sometimes the word retard is used in a very offensive way, but usually it is not.

And that word retard does not always have to make my blood boil when it is used. It can remind me of all of the great things Lydia is. It can remind me that she does not live up to the stereotypes of that word. It reminds me how capable she is. It reminds me how when I expose her to others, they are learning. She breaks down stereotypes because she shows people how very capable she is.

I am not promoting use of the word by any means, but I am trying to take one of those situations that adds unnecessary stress to me, into a positive. I don't have to explain her to anyone and I don't have to worry about everyone liking her. And usually when someone else is using that word it is not to describe my child, it is usually just a poor choice in words.

Thank you though for using that word, for making my blood boil, and for showing me that it doesn't have to ruin my day. That word can be a reminder to me of how wonderful she is!

Lessons Learned from the Passenger Seat of a 1978 GMC RV

My husband has become a bit obsessed with RVs.  So much so, that he decided to take his parents RV and make it road worthy for our family.  I support and love my husband, so I went along with this knowing it would bring memories for our family.  When my husband asked if I wanted to ride with him on the first ride out to get gas, I just laughed.  But I went.  I wanted to support him.  I laughed as I watched people look at us because I could only imagine how silly we looked.  They were not as impressed with the outside appearance or the loud noise or the constant smell of gas, I don't think I was either! 

                                               Here is a picture of THE 1978 GMC RV!

We took it home, only getting stranded along the road once; a blown tire and smoking coming from the under part of the hood.  No big deal.  We had two sleeping children and one that could not pull her eyes away from the I-Pad.  A quick trip back to the local gas station with some needed supplies and we were up and rolling again.

We had to clean the inside of the RV and it was a family affair.  Our oldest girl was so excited about the manual roll down windows.  She even thought others were "jealous" about "our sweet ride."  I listened to the girls talk about the memories that we would make in this 1978 GMC RV.

                                          Ellen wasn't kidding, this is "One SWEET Ride!"

We recently packed up that 1978 GMC RV for an extended weekend on the road.  We loaded it and had no place in particular as to where we were going.  The girls were giggly with excitement.  I believe my husband and I were just as excited.  We gave our two oldest girls a map and they were navigating our trip.  They picked the roads we were driving on and the places we would stop.

                Ellen found there was a Lake Ellen on the map, so we had to go check it out!

I realized then, it was the unplanned things in life that cause us to experience the most beauty.  It was the things in life that we never expected that give us the best blessing and the most joy.  It is the things that everyone overlooks that can be the vehicle for the best experiences.

I never thought that I wanted a child with Down syndrome, I never thought that I was strong enough to parent a child with complex medical needs.  I am pretty sure I would have never stood in that line and signed up.  However, I am glad that God knew that is what I needed.  I am glad that I have gotten the opportunity to experience it.

         A family experiencing life to the fullest, not allowing snickers or stares to get in the way!

Just like the 1978 GMC RV, it was overlooked for what it truly is.  You can snarl and you can stare, you can make jokes and comment, but until you really experience the 1978 GMC RV, you don't know what you are missing.  Judging it from the outside simply is not fair.  You will rob yourself from some of the best times.  Thinking you are better than the people who ride in the 1978 GMC RV is a disadvantage for you, because they may be the best friend you ever experience.   

If I allowed myself to say that I was too good to sit shot gun in the passenger seat of that 1978 GMC RV, I would have robbed myself of the beauty that I was about to experience.  That 1978 GMC RV took me and my family to some of the most picturesque places I have seen.  It allowed my family to cook and laugh over a campfire.  It allowed us to have memories of sitting inside of it playing games, eating food, and sleeping in confined spaces.  It allowed us to experience the love of a family as it was intended to be.

                   The 3 girls having an amazing time on our adventure in the 1978 GMC RV!

See, you can laugh and make jokes about it, or you can jump feet first and experience things that will bring you joy and laughter, make memories, and allow you to grow closer as a family.  I believe Down syndrome is no different than that 1978 GMC RV.  Down syndrome is not something that you expect or hope your child has when you are expecting a baby.  Down syndrome may not look pretty or inviting from the outside.  Down syndrome may seem ugly and scary and like a path you may not want to travel.

However, when you open yourself up to the unexpected, when you put aside those mean comments and nasty stares, you will experience beauty as you have never seen before.  You will experience love that words fail to describe.  You will find yourself on a path less traveled and it is OK.  You will realize that you are stronger than you ever thought possible. 

I have come to realize that it is a mean cruel world in many respects and sometimes you really have to search for the good.  Some people may never come to fully understand, respect, or accept the beauty that lies in that 1978 GMC RV.  And that is OK.  It is their loss.  They are the ones missing out.  And I understand that I may never change opinions or minds or attitudes about how wonderful Down syndrome is.  And that is OK too.  I need to live out my life in confidence that this is the path that was meant for me.  I need not to be ashamed of what Down syndrome is in fear of a negative comment.  Reality is, there will always be a negative comment, but Lydia is so much more than Down syndrome just as that 1978 GMC RV is so much more than its ugliness.

  If I never got into the passenger seat of the 1978 GMC RV, I would have missed out on this beauty!

I am so glad that I did not let those stares and negative comments, those snickers and snarls keep me from experiencing the beauty that that 1978 GMC RV lead me to.   I am also glad that I did not let my fear of the unknown of Down syndrome and the many false perceptions of what Down syndrome is to miss out on one of the greatest blessings my life has ever known; Lydibug.  I'm so thankful for the lessons I learned in the passenger seat of that 1978 GMC RV and how wonderfully they have affected my life. 

She's Always Happy

One word that is often used to describe a person with Down syndrome is that they are always happy. I have taken some time to observe Lydia and see how accurate that statement is. Honestly it drives me nuts because my mind is taken to all of the times she disobeys, yells and screams, throws a tantrum. To me, she has every emotion and really there is no difference with her than my other children. However, there is a difference!

Lydia is attracted to people as people are attracted to her. I find that no matter what she is going through she is more concerned about the stranger standing in line. She has a genuine interest in people and she has a genuine kindness in her heart. It is something that is unfamiliar to this world. When she sees someone hurting, sad, looking at her, she wants them to be happy. She doesn't see them staring at her because she's different, she just wants to see them smile.

When we are at the clinic and she's giving blood, even though it hurts her, she's often more concerned about the person drawing blood. She will start to smile until she sees the tech smiles. It is almost as if she does not succeed until she sees that person smile. Often times I find myself thinking that her mission is to bring a smile to other people's faces no matter what.

When she is eating and she's choking, I ask if she is ok. She immediately looks up in the middle of coughing to give me a thumbs up. She does not want me to worry. When she is able, you will see her beautiful smile that makes the room light up. She's not necessarily ok, but she smiles. Sometimes my heart is full and other times it aches knowing that despite her pain, other people's happiness brings her great joy.

She goes to school and gives it her all for the couple hours she is there. She is determined, she is smiling, and she is helping others. She is quick to run to someone to give them a hug, kiss and make it better or just cheer someone on with a high five. That's just who she is. However, when we get home I see her struggle. She coughs and is tired. She sits on my lap sucking her bottom lip, twirling
my hair in her tiny hands, fighting to keep her eyes open. I look at her and tell her I love her and she manages a half smile from the corner of her mouth.

She throws a tantrum because I cannot understand what she needs. She gets frustrated and angry. It is not her fault, nor is it mine, but sometimes there is no good way to change the situation. She throws her body on the ground and hits the floor, screaming. She yells and looks at me like what is wrong with you mom, why can't you understand. I do my best but there is frustration. As she comes out of the tantrum she easily forgets, gives me a hug and tries to make me smile. It is forgotten and left behind with not an utterance of it again. Her smile is still there through the frustration and she always makes sure that I have a hug or I am ok.

I watch her in the hospital when she is feeling crumby, is in pain, and just wants to be left alone.n as soon as the nurse or doctor walks in, she has a smile and is ready to give a high five or a hug. She loves people and it does not matter how she feels, she will reach out to anyone and make them smile.
She interacts with the hospital staff and lights up when they smile back. She waits for them to give
her a little bit of attention and then she turns on her LYDIBUG charm!

I guess what I am saying is she does smile a lot. But her smile is for your good and not because she is always happy. She looks for ways to make others smile, that is one of her gifts. She has the full range of emotions, she feels just like you and me. But she is built with an inner smile to make the hardest of faces smile back at her. Her smile says she cares about you, her smile says to have a great day, her smile tells you you are loved. It doesn't mean she is always happy, it only means that she thinks of others before herself!

Simple

I watch you sitting on the floor playing with a toy.  You are so determined and there is something amazing watching you try to slide every colored wooden piece to the other side of the toy.  You understand what is suppose to happen and then you try and try to accomplish it.  You don't give up, not even once.  You keep going despite your growing frustration.  I love watching you play.  I love watching you try and try and I love watching you celebrate as you accomplish what you want.

Tears start rolling down my face.  There was a time when I thought that this toy should only be for babies.  A time when I would have had that toy packed away long before now.  I would have expected that you should be on to something new, learning and exploring things at a different age group.  I may have convinced myself that you should be something more than what you are, I may have even regretted moments like this.

As I watch you and I continue to cry, you quickly glance at me.  Without hesitation you get up, climb on my lap and embrace me.  You say nothing, but as I look into your eyes you tell me everything.  Your eyes tell great stories.  You grab my face and look deep into my eyes.  Then you use your elbows and wipe away my tears.  You don't say anything but smile.  We have exchanged thousands of words in this short while, but we haven't uttered one single word.  You hug me again.

In the background music starts playing.  You instantly start directing the music.  You are perfectly timed with they rhythm of the song.  You do it as though you were meant to direct the most beautiful music in the world.  You continue directing and keeping with the rhythm until the next thing catches your eye and you are off.

I heard someone say that love is about sacrificing and giving someone else what they want, even if it means sacrificing what you really want.  It is about focusing on what you have, not regretting, not longing for what you don't have.  In these moments this morning, you reminded me of that once again.

You are exactly what I need, and God knew that.  Sometimes I have a hard time realizing that.  Too often I am caught up more in what I want and what I thought that should have been.  It is sad because I miss these simple moments, I miss what was given to me, what I should be focusing on.  When I spend too long in that state of regret, longing, that place of discontentment, it robs me of everything that you are and every blessing that was meant for my life.

I would ever change you, but when the moments are hard, when the months are long; I find myself wishing, dreaming of more of something else.  Those moments of comparing take my eyes off of these moments.   That discontentment robs me of the simple moments of love.  It takes me to a place that I should not be and miss what I do have.

I realize this journey is hard, it is long but when I am not present where God has placed me, I miss out on so many blessings.  This morning was a great reminder of the simple joy that you bring.  The simple joy that we all miss because we are not content or we are busy comparing what that person has and trying to achieve something that is not meant for our life.  If we want to find true and pure love it is focusing on what we do have and not longing for something we don't have.

In that moment, I found that I have a fortune.  You told me so in our conversation this morning when we exchanged stares.

Chickens N Down Syndrome

For many of you, who know about my recent obsession; this title should come as no surprise.  To you that don't know, a month or so ago we purchased chickens.  And since then, it has become an obsession.  We are up to almost 50 chickens.  It is very addicting and so much fun!

One day I was out in the coop and I was shoveling the poop into the bucket.  A smile came across my face and I felt extremely happy.  I was brought back to a place, when I was younger, playing on the farm.  Many summers I spent extended time with my grandparents and my cousin and I would get into a lot of trouble on the farm.  I remember that I was happy when I was outside working, doing physical labor.

But, farming, I was told, did not provide a living.  Farming was hard work, lots of hours, and often little benefits.  But I was happy with who I was when I was out in the field, when I was milking the cows, when I was covered in head to toe with poop and smelled.  I felt as though I was accomplishing something.  I felt like I had a purpose.

As the years passed, the farm was farther and farther from my world.  Once married, we moved to a city.  I hated it.  I hated that when I ate breakfast I could see our neighbor showering.  I hated when I showered I could see our other neighbors.  I felt suffocated and was not happy.  My husband was not either.  After just a couple of years, we found ourselves ready to move out of the city into the country. 

While we did not get the amount of land, the isolation that we originally wanted; we did get a couple of acres a barn and a typical farm house.  It was perfect, still some neighbors, relatively close to town, but room to run.  The night sky is amazing, the sunsets and sunrises are breath taking and the air smells amazing.

Then kids came.  We always seemed to be running and doing this and that.  Everything that attracted us to the country seemed like a distant memory.  There were very few times we enjoyed that land, it became a burden to mow and take care of.  While the girls enjoy being outside it seemed like life was just so busy.

When Lydia came along, our life slowed.  Many things were focused on her because of her many medical issues.  The older girls kept pressing for an animal.  Knowing that I could not properly care for a dog (our house is too small and I am just a little OCD about dog hair), that was not an option.  We had a cat that we now have shared custody with our neighbors (long story, but when we stayed at the RMH they cared for him and fell in love with him). 

I've always wanted animals to care for.  But what?  After many discussions, chickens were decided on.  We purchased four to start with.  Lydia loved them.  She has never been keen on dogs and the cats are OK, but the chickens.  She could chase and scream with them and she loves collecting the eggs.  The other girls love them too.

Soon, like the next day the four chickens grew to nine chickens.  Then the nine grew to who knows how many.  And in two short months, we have 36 hens, 3 roosters, and 10 chicks.  It has been so much fun.  It brings us together as a family.  We have built the coops together, we have had fun naming the chickens, we sit and laugh as they fight over food.  We enjoy selling our eggs, but we also enjoy giving them away as a blessing to others. 

As I was shoveling I felt like I had purpose and meaning.  I felt like I had been ignoring who I really was (a crazy chicken farmer :)) for too long.  It made me question and wonder who I was.  It made many days harder because I lost who I was.  I lost focus of the simple stuff to chase things that were never meant to be.  I allowed outside influences to consume me and ignore who God created me to be.

This is what I love about Lydia, she is who she is.  She does not try to pretend to be someone she is not.  She is who God created her to be.  She is loving and no rules, no colors, no boundaries will stop her.  She is silly and she does not hide it.  She doesn't pretend, what you see is who she is.  She has a smile that draws you in, she has a personality that is unwavering.  She does not let outside influences influence who she is.  She is determined and nothing will stand in her way.  Some may call the stubborn, but I think that is one of her very best qualities!

She slows life down for us and puts into perspective the really important things.  As we walk through the store and she wants me to stop 100 times to kiss her, I will.  Because that is important than anything else.  She takes time to give a hug to that homely-looking person and we all should be more like that.  She has a twinkle in her eye that others cannot ignore. 

She has a confidence about her that is contagious, if you allow it to be.  When you break down the outside influences, the perceptions, and allow the moment to happen, you will be blessed beyond what you think.  See, when we are who we are created to be, God has so much more in store for us.

I think the confidence in who she is, is very intimidating to many.  It was to me.  But now, she has shown me a life that I could have never fathomed before.  I am blessed because I have found that confidence that God gives to us.  I have found that strength to be exactly as God created me to be.  If that is just a big silly chicken farmer, than so be it.  I am successful because I am loved beyond words, I am happy and isn't that really what almost everyone is seeking these days.

Until you break down the walls and allow yourself to be who you were created to be, you are chasing something you can never be.  Lydia may never be a doctor or a lawyer, but she will be happy and that is all that you can hope for for your children.  She has it, the key...she is who she is and I am blessed.  I don't want to stand in her way.  For she holds the key that many are searching for.  Look out world, you haven't seen anything yet!

Silly chickens that taught me a lesson that I have been looking for.  Life just seems so complete when I am shoving that poop into the bucket.  When I name our chickens and talk with them and they provide hours of entertainment.  When my husband and I feel complete because of our flock of birds, our girls who are happy, and a life that seemed so distant but now seems so full, if that is odd or weird, if that is not "normal" I am OK with that. 

Thanks Lydia for once again pushing mom and allowing mom to find that happiness by being me.  I don't have to live up to any standards that I feel the world is telling me to be.  I don't have to be something that I know I am not.  I have to be me, who I was created to be.  You are one amazing little girl and I am blessed that God chose me to be your mom!

The Grass is Greener

I woke up, just like every other morning.  Half asleep debating if I really wanted to go on the bike.  I untangled myself from my daughter's oxygen cord, just another reminder that I am a parent of a special child.  I stumble down the stairs and stub my toe on that huge concentrator that my daughter is hooked up to, providing the oxygen she needs to maintain healthy saturations. 

I reluctantly hop on my bike, it has been several weeks since I have rode on it but know I need this.  My life has been lived in a hospital room helping my daughter battle RSV.  Since home I have tried to catch up on sleep that the hospital stole from me, make up time with my girls that was robbed by another sickness, and try to spend a little time on my marriage.  Life has been busy.

I take a deep breathe and turn on the music.  I am slow this morning.  Many things running through my mind.  I drift into a daydream.  I dream about other people's lives and what it must be like to live their life.  I think how green the grass looks on the other side.  If only this, if only that.  My daydreams quickly turns to anger and jealousy.  Why can't I be like that?  Why can't life be that simple for me?  I have reminders all over my life of how difficult and isolating it is to raise a child with special needs and many medical complications.

Then I have reminders of how that green grass on the other side of the fence is tainted with their own thistles and weeds.  I am reminded of the horrors of other people's lives all around me.  The police officer that was just shot yesterday in our community, the family whose mom is battling cancer, the man who is watching his father die because of cancer, the family that is fostering the impossible child, the family who just experienced the tragic loss of a child, the family that battles in silence, the broken marriage.  The list can go on and on of what the green grass covers up.  What is behind the smile, what is really going on?

As I turned my phone to my daily devotion God gave me Philippians 2:3-5.  I needed this.  It says: "Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves.  Each of you should look not only to your own interests, but also to the interests of others.  Your attitude should be the same as that of Christ Jesus."  I needed this today. 

A little bit of daydreaming turns into jealousy and anger.  None of that is healthy.  The truth is, God has written a path for everyone's lives.  Some are similar and some are completely different.  There are struggles and trials in everyone's lives.  I was encouraged to not daydream but to help others.  I was encouraged to not wallow where God has me, but to help others in their place.  And if I want to have my grass green, I need to put in the time, I need to pull the thistles, and I need to water it, mow it, and take care of it.  Daydreaming of someone else's grass will not help mine.

There are reminders all around of the path God has written for me.  Some are harder to accept than others.  The conversation that I had the other day with my middle child.  Mom, can you tell me what retard is.  Mom, I don't want to put Lydia down, but I want to know what it means.  As we talked and I got that deep burning feeling out, it felt good that I was teaching my child about what the meaning of words are and how she should use them.  The word retard really gets to me, to think that Lydia is mentally retarded is really hard for me.  She is my daughter, full of life and laughter.  Whether she is slow, retarded, has Down syndrome or whatever is pointless because none of them describes who she is.  I learned this is part of the pruning of my grass.  I need to cut those things out and pull the roots.  I need to remember whose child she is, she is the daughter of the King of Kings.  I can't allow that word to take seed and root itself deep in my grass.

There are other reminders.  The isolation of staying put inside a house all day.  The isolation of monitoring a child and helping them navigate their environment while hooked on a tube.  As I looked around the parking lot and saw other moms walking their children into school, looking as though there was not a care in this world, I felt that hot anger getting root again.  I had to be thankful that I was able to get out of the house (I have not been able to take the kids to school in over a week).  I had to be thankful that God has allowed me to provide a safe place for Lydia of healing and restoration.  It's not what I want, where I want to be, but I need to continue to prune, mow, and tend to MY grass.

The grass will always look greener on the other side and that is because we have not been there to do the work.  It is fun sometimes to admire how beautiful it looks and wish we were there, but that is a very dangerous place to be.  Getting a diagnosis of Down syndrome can sometimes feel like that too, unfair and like your entire lawn was just killed.  However, when you allow the seed to take over and pull the roots of all of the untrue information and stereotypes, your grass too can become beautiful and green.  There is nothing in this life with God's help, that will destroy our lawn.  Be happy right where God has planted you.  Tend to your grass, mow it, prune it, and put the time in for it to be green and healthy.

Connecting Pieces

A couple of weekends ago I attended a workshop that was put on by our local Down Syndrome group (DSAW-Fox Cities).  They brought in a presenter named Alice Belgrade.  The title of the workshop was from defiance to compliance.  I knew that I needed some of this with Lydia.  It was a great workshop and I had a lot of fun being away from the kids with a good friend!

I know that parenting a child with special needs, specifically with many medical challenges, is different than my other kids.  However, I have not been able to put my finger exactly on what is different.  But there are many times my husband and I just shake our head and we are at a loss of what to do next. 

One of the major take aways that I had from this day long conference was about the environment Lydia has.  I work so hard on making it safe, and getting the toys that are accurate for her ability, and making sure that I work with her on her skills and what she is doing in therapy.  However, I have been missing two huge key parts.  One is "Is the environment functional for her?"  Two is "She likes to have fun and is her environment fun?"  No and no were my answers.

I remember with Ellen and Allison I enjoyed baking with them (we still make many memories cooking together).  I remember that Ellen was great at pouring and really struggled with cracking eggs.  I had to either pre-crack the eggs or have her sister do that.  Allison was just the opposite in that she was great at cracking eggs but really struggled to pour.  I had to either pour for her or pour the liquid into a smaller container so she could pour.  I did this so they would have success and they could take pride in helping me bake.  No where ever did it enter my mind that Ellen is three and she should be cracking an egg.  No where ever did it enter my mind that Allison is two and she should be able to pour.  Their environments were set up so both of them could feel success at their individual ability.

They are no different than Lydia.  I need to create an environment where Lydia can be successful and she can complete tasks on her ability.  I should not think that because she is three, she should be doing this.  No, I should look at her abilities and create the environment to fit her abilities. 

Sounds really simple, right?  Yep, I agree too.  But I have struggled with this.  As I have thought and wondered why this was so difficult to me, I had to admit something that is really hard for me to.  I had to admit that maybe, somewhere in my mind, I believed the negativity that was told to me at the beginning.  Maybe I didn't really believe that she could do it because she has Down syndrome.  Maybe I was passing her off and not giving her the opportunity that she needed.  That sounds horrible.  But I am slowly connecting those pieces.

I remember sitting at one of Lydia's very first IEP meetings.  We wanted to set a goal of her being able to button and unbutton.  Her OT said that was probably too high level and they would not expect Lydia to be doing that yet.  Eric, my husband, firmly said that we want to keep pushing Lydia and allow her to tell us when too much is too much.  We don't want to predetermine what she can do or cannot do.  That is important to both Eric and myself, but I get caught in all of the negatives.  I see the tests that say she is so far behind and this small, yet very powerful voice says she will be nothing.  I get confused and I struggle with that.

Lydia deserves an environment where she can experience more success than failure.  It is not based on age or disability or the color of her eyes.  It is based on what Lydia can do and where Lydia is at.  It's putting extra step stools in the kitchen so she can reach the plates, because she is capable.  It is helping her to get the lid started on the water bottle so she can finish it and experience the same success as her sisters.  It is taking my time to help her to hang her jacket on a hanger.  It is that extra three minutes that I get frustrated with.  But it is about helping her experience success and not failures.

I also forget how much she loves people.  I forget that she loves to have fun and be a goofball.  This motivates her, this helps her to want to do more when it is in a fun environment.  Seems so simple again, yet I couldn't put those pieces together until now.  Instead of thinking about it as playing games when she is eating, I think of it as creating a fun environment so she can be successful.  It is hard sometimes because what I think should happen, doesn't.  But it doesn't happen the way I think it should either.  So really, if we are able to motivate her by allowing her to have fun, we have a win.  No matter what I think!

It is hard to admit that I probably have been a huge stumbling block in a lot her learning because I could not simply let down my wants and do what is really best for her.  I forgot to create an environment for her where she can excel.  I did so well with my other girls, what happened?  I think that I got so wrapped up in trying to create awareness, trying to manage medical issues, and trying to prove to someone (I am not sure who that would be) that she is worth something.  She is worth everything simply because she is my daughter.  It does not matter what others think and I need to remember that.

When we cooked the other day, Lydia was able to pull the butter from the paper, she was able to turn the cap to the vanilla, and lower the mixer and lock it into place.  She was able to laugh and play with her sisters.  I created three separate environments for each child, one where they could learn, be challenged and still experience success. 

I think after writing my last blog post, I was able to easily connect the pieces.  Awareness, to me, is not about proving Lydia's worth.  It is about showing what she is capable of doing right where she is at.  It is about changing who I am to be the very best mother and advocate for her (and this goes with my other girls as well).  I think it is about changing attitudes towards Lydia.  She is not less of a person because Downy syndrome.  She may be different, but I am completely different from my sisters too!

I am glad that God has allowed me to connect these pieces.  Things that seem to be right in front of me, but I was completely missing them.  Creating an environment where she can feel successful is my ultimate goal.  And it does not matter what she should be doing at what age, it is about her ability today!  I have nothing to prove to anyone but share my sweet little girl with everyone!

I have a daughter with Down syndrome...So What?!

Happy Trisomy Awareness month!  My Facebook news feed is spilling over with all kinds of pictures and saying about Down syndrome, Edwards syndrome and many other different Trisomy's.  Part of me wanted to jump in and start posting, write a whole bunch of blogs and flood everyone else's news feeds with facts and pictures of sweet little Lydia (well more than I already do!).  However, I can't seem to formulate one single word. 

I have been thinking lot about what awareness is to me and why it is so important.  Why do I wish to share Lydia's story?  And really the bottom line is, I have always felt that I needed to defend why I chose to have Lydia.  I have felt like I needed to defend why her life is just as important as my other daughter's.  I feel the need to defend her when we are out in public, when we are at her IEP for school.  I feel the need to defend her on social media or through my blogs. 

I personally have had some pretty nasty words uttered to me regarding Lydia.  Those stick with you even if you don't dwell on them.  They are like small whispers that stay in the back of your brain and haunt you at very odd times.  I have also read so many times how horrible the information on the Internet is about Down syndrome.  I personally have not Googled it, but I have heard there is a lot of negative things.  Just from my personal experience, I have heard more about what she cannot do than what she can do.

I think for a mom, this is horrible.  You read the statistics about how many babies are aborted when there is a prenatal diagnosis of Down syndrome.  Why?  Is it because of all of the negativity and focus on what can't be done?  Is it fear?  I don't know, I can't answer that.  But I guess that is what leads me to the beginning of my journey with awareness.  I want those around me to know what Lydia CAN do and what a true blessing she is.  I am not out to set the world on fire, my blogs hardly ever get read.  That's fine, I blog to help me and hopefully to inspire others.  But I want to be honest with those around me.  Life with 47 Chromosomes is pretty much awesome!

I am upfront about my faith and how I rely on it in every aspect of my life.  I don't try to push it on anyone, but I will not compromise it.  That is the same with my daughter.  I will not push her on anyone.  I realize that there are true fears and resistance against someone who is different (I personally don't understand it, but I do know that this is a real fear).  However, I will never compromise what she can do or think that she is less of a daughter than any of my other girls.  She has a purpose and a place in this family and I am proud of that.

Today as we were cleaning rooms, she signed music.  She loves the Karaoke machine and always wants to sing.  We put Frozen in and she turned it to Let It Go.  She gave me a mic and I immediately picked it up an started singing with her.  I am sure it was one of the worst sounds heard, but we were making our own music together.  There was a time that I would not sing in front of anyone.  I was once told that I did not have a very good voice and I should just keep that to myself.  I don't have the best voice, but it is not horrible.  However, those words kept me from singing.

However, once Lydia came along, she taught me to embrace the moment.  When we were in the hospital she loved it when I sang to her.  Because we did not know what the next moments would bring, if we would ever get another chance to make memories, I sang to her when doctors and nurses were in the room.  I kept doing it and by the end of our five plus month hospital stay, I never even considered not singing.

Today was no exception.  We jammed and we laughed and we made some great memories.  I have learned that it really does not matter what other people think.  The ones who really matter will embrace her no matter what.  She has embraced my not so good singing voice and I have embraced her 47 Chromosomes. 

I don't want the negativity to be part of her journey.  I don't want her to think because she has Down syndrome she is less or she can't do something.  I understand there may be things that she is not capable of doing, but I don't want that to be set before she even tries.

That is why it is so important to create awareness.  I don't ask that you be her best friend, you don't have to like her.  But I want you to be aware of what she can do.  I want you to know she is not less, she is just different.  And after all, we are all different.  Each of my girls have their own strengths and their own weaknesses.

It is time to start showing the world what a child with 47 Chromosomes CAN do and not focus on what they can't.  Yes, there are some things that are more typical, but that makes them who they are and does not define them.

My awareness journey is to bring awareness and to create better communities in which Lydia and her peers live.  We have been completely blessed by her school, our friends, our family, and our church that they completely accept her for her.  She has a place and it is no different than me or you!

Untitled

So, it has been a long time since I have written my thoughts. We have battled through several weeks that have been difficult in the sense of getting no answers again and watching Lydia be sick. There have been many things that have had happened recently that has left me in deep thought. We had a ministry visit our church the other day that deals with adults with intellectual disabilities and it left me with many thoughts. A friend asked me to send her an e-mail for a paper she was working on regarding my thoughts about schooling and faith and our journey with Lydia. So, I need to get some thoughts out. I am sure this will be very random and jumbled but maybe you can make better sense out of my thoughts than I can!

Shepherds Ministry came to visit our church the other weekend and there were two things that really hit me. Talking about the worth of a person with a disability. Why is it when someone talks about a disability usually we go for the things they can't do or the typical stereotypes? When I see Lydia I don't see those things, she is a person, she is my daughter, she is my best friend, she drives me nuts, I see determination and capabilities. I don't believe that is always what I describe though. I think that happens with prenatal diagnosis too, you hear the bad and not the good. I don't believe that this is exclusive to Down syndrome either. Why? I don't know but it makes me sad. It makes me sad that there is something inside of me that tells me I need to describe Lydia with her disabilities and not put her abilities first. Maybe it is because the way we test and do IEPs, all of that is based on what she can't do. Could things change a lot if we looked at what she can do? I don't do that with my other children, even if they are behind. What makes it so different with her?

As I think about this, for me it really goes further and is more about where I get my identity. I believe that Lydia was fearfully and wonderfully made. I don't believe that she is some kind of mistake or anything less than any of my other girls. But I allow the voices in society, the stereotypes and the negativity to clutter my mind. I allow those whispers to take over and tell me she is less, she is not this, and she is not that. That is false. She is a daughter to the King of Kings, she is a beating heart and love. She is a friend and a sister, a daughter and granddaughter, she is a friend and a student. She is so many things and Down syndrome is one of them but it does not define her. I am going to try harder to get my identity from Christ and not this world. I am going to try to have Christ's whisper louder than the things of this world. I am going to try to describe her by her abilities and leave her weaknesses alone. We all have weaknesses and they should not be highlighted for any individual.

The other point that hit me really hard when I heard this gentleman speak about Shepherd ministries was they types of relationships we have in our lives. I remember in the hospital when a group of doctors came in and called Lydia an "it." It devastated me to the core. I was so appalled that someone could think she was less than a beating heart that she was a thing and not a human. I wondered what made her so different than anyone else standing in that room. I had the opportunity to talk to one of the doctors, who was a student, and share with her how her choice of words affected a mom. I hope it was a learning experience for her, I know it was a huge learning experience for me.

This gentleman from Shepherds ministries talked about an I Thou relationship and an I it relationship. How many of us truly value a relationship? How many of us really put others before our needs? How many would do something kind for a stranger? How many of us stop and pay attention to the little details in our relationships? If I am being honest, a lot of time I treat my relationships more like a possession rather than a human being with feelings and emotions. I don't try, but I am not good in this area. But God has given me one of the best teachers, Lydia. Lydia is GREAT at being a friend, at putting others first, at noticing all of the small stuff, at just making you feel good about yourself. It is a true gift and I have a lot to learn from her. But how often am I too busy and I miss out on this blessing. I want to work harder on being better at having more I Thou relationships and treating everyone as God wants us to.

I had a great opportunity to share this analogy with Ellen. She is starting to struggle with friendships. I think this is an important aspect to teach our children at a young age. It is important that they realize a healthy good relationship from an unhealthy relationship. I am not good at it, so it is a journey we will take together. But how thought provoking for me to see this and understand more about the relationships in my life. And to realize what a blessing it is that Lydia holds for so many to learn from.

I also have had a sting of jealousy lately. I try so hard to battle against it, but it is hard. Eric and I had to miss our Valentine's Banquet at church because Lydia was sick. We spent hours watching her get poked, seeing blood pour out of her, holding her as she screamed out in pain. We spent time talking with doctors trying to find a reason of why she was turning blue. We spent time in prayer as to what our next steps should be. Only to come home and watch her with no real answers. I was wallowing in self pity because I couldn't be present at this banquet. But the truth is God had other plans for us and I needed to accept that. I was also a bit upset because I knew that my husband would not have planned any type of Valentine's Day surprises for me. I was jealous of the other ladies who got something, who were able to spend time with their significant other, who enjoyed their time. However, I can focus on poor me or I can feel blessed that I am able to care for my daughter, that my husband cares enough about his family to be there for his daughter too. There are so many things that I can be thankful for, but it just seems so hard to chose that and not pity myself.

I also struggle because yesterday Lydia had to miss her field trip. Lydia has missed a fair amount of school and will probably continue to do so. We might even have to stick with half days. Sometimes it just is not fair. She already is completely behind her peers, not talking, not understanding things as she should, not being able to do many of the tasks and now she has to miss out on school and the opportunity to learn and she has to miss out on fun. I know that she does not know the difference (sometimes that makes me even more sad) but I do as her mom and I struggle with that. Sometimes I feel so jealous of the other moms and dads who can go about their life completely unaffected by a sick child or a child who is significantly behind. Sometimes I get angry because I see just how far behind she is and there is nothing I can do, this is who she is. Sometimes I want to scream and yell. Maybe is sounds silly, but these are my true feelings. It is hard to have a child who is behind, to see that flashing in your face, to watch others excel while your daughter struggles. It is hard. And sometimes it is harder when you are surrounded by folks who don't walk this journey and have no clue. I feel alone and isolated many times. I struggle. I realize no one is doing anything wrong, they are simply living their life as they should. Jealousy is a terrible thing and I try so hard to not let it have a place in my life, but it creeps in and catches me completely off guard. It debilitates me and it isolates me from others. It keeps me from being a good friend often times. I know it shouldn't, but it is a real road block for me. I hate that she is behind sometimes and I hate that she has to work so hard to accomplish things, and I hate that her medical issues dictates our life all of the time. I hate that we have to give up so many normal things because we are on this journey. I struggle. It is hard.

I also get confused about what is right for her for schooling. I realize that no one can tell me that other than God and our family. Inclusion, non inclusion, partial inclusion, where to go, public or private, how much therapy does she need? It is all so confusing and overwhelming. I want to do the very best thing for her and I want to give her every opportunity in life. I read the research, I talk with other moms and dads, I talk with teachers and I hear a lot of people's opinions. But when you boil it down, Lydia is a beating heart and an individual. What works for one may not work for her. It will be a decision that we have to make and probably one that we will have to revisit often. I don't think there is one correct answer, it will be what works best for Lydia and that will be something that we will just have to "live" into! However, I am beginning to realize that she knows what love is each and every day, she understands that she has a family who would do anything for her and will always be there for her. And really, isn't that what every child deserves? Love can take us all a lot of places. Knowing you have support and people who will never give up on you is worth more than many things. So I will continue to pray and search for answers, trying to figure out what is very best for our bug. It is so overwhelming and when you throw in her on going medical conditions, it adds so much more to the confusion, but I will never stop loving her and that alone will take her to great heights.

Some days are so easy and some days are so hard. But as we sat on the couch this morning, I looked at her and she looked at me and I was overcome with unspeakable joy. She really is one of my very best friends. She challenges me, she loves me, she teaches me, she angers me, she surprises me, she encourages me, she inspires me, she tests me, and she will always be my little Lydibug. She has given me a new perspective on life, she shows me things through a different lens that not many get to experience. She is a gift to me from God, on loan to me for a short time.

Life on the special needs journey, medical issues or not is tough. I have learned to be open and honest with these feelings but most importantly to not dwell on them. I recognize them and I try to move past them. I think in life, no matter what your trial is, if you dwell on it you can live in a state of self pity. Life is not fair but one thing that Lydia has taught me, what you don't know is OK. She doesn't know she is behind, she doesn't know she is different, she doesn't know she missed her field trip, she doesn't know that it is not "normal" to not live at a hospital, to be sick, and to be poked all of the time and she is just fine with that. She embraces right where she is at and she makes the most out of every moment of her life. I have the best role model given to me and I will continue to learn the lessons that she is here to teach me! And I am blessed because of that.

The Battle Within

It's Tuesday.  The alarm went off at 4:30 AM.  I stumbled out of bed and tried to quietly get down the stairs without seeing any eyes.  I open the door to the basement and my eyes are immediately opened to the stark cold air.  I make my way to my bike and loose myself for a moment.  I worship to the music, I play on Facebook or I read a devotion. 

I come back upstairs and the smell of throw up hits me, I see the piles of laundry that need to be folded and I see a tiny little girl snuggled in the fold of her daddy's arm.  She is struggling to breath and you can hear the mucus suffocating her with every breath.  I lean over to kiss her and the sweet smell of her has been replaced with a horrid vomit smell that radiates from her pores.

Reality hits me when she reaches up and says "momma".  She is not going to school today, she will most likely not do much other than rock on mommas lap today.  She is sick, there is something wrong.  We will wait the lab results from yesterday and we will do our best to keep our head above water.

As I drop the older girls at school, I fight back tears.  I grab Lydia and hold my breath because the vomit smell is almost intoxicating.  I sit in the car and choke back a flood of tears.  I say a little prayer and I drive away.  The tears, however, cannot be stopped.  My eyes are flooded with water and my jeans are soaked with tears.  I convince myself that coffee would make it all better.

As we drive home, Lydia's head starts to bob.  She is having a hard time staying awake.  I know that she wants to give me a hug, because that is just what she does.  But, she can't fight the Sandman and soon sub comes to sleep.  I continue to drive and sob as I try to drink my coffee.  By the way, the coffee tasted OK, but it did not calm the battle that was raging within me.

It is Tuesday, that means that I am suppose to be as school volunteering and Lydia is suppose to be at school learning and interacting.  I am suppose to be busy making plans for the Valentine's banquet that I am planning for this coming Friday.  It was suppose to be a very productive day.  This is my day.

Doesn't sickness know that Lydia is WAY down weight and needs to eat?  Doesn't sickness know that she cannot afford to not eat, she needs to gain weight like yesterday?  Doesn't this sickness realize that I have better things to do than tend to a sick child all day?  Doesn't this sickness understand that I am so over you?  Doesn't this sickness understand that it is no longer welcomed here?

I cry because I am battling selfishness.  I don't want to give up the little bit of independence that I have recently found with Lydia attending school.  I don't want to have to stay up late planning the last minute details for the Valentine's day banquet.  I don't want to have to put myself on the backburner.  I don't enjoy listening to a child moan and smelling like vomit.  I don't like doing the same load of wash over and over and over.  I don't like seeing my daughter in pain.  I don't like having the stress of having to feed my child.  I hate this struggle of feeding. All. Of. The. Time.  I don't want to share my strawberries and bananas with my middle child, can't I just have something for myself?  For once?

I get it, I get what my mom was talking about when I was younger.  There is no privacy as a mom, there is no real mom time, and there is no room for selfishness.  And there is no time for me throwing myself on the floor and throwing a tantrum like I often want to do when one of my children are doing that.  Can mom just join in once?

I struggle with selfishness.  But as I had my good cry, drank my coffee, played some games on the Kindle and rocked this sweet child, I realized that I am so blessed.  I have a daughter that I am able to rock and nurture and care for.  I am able to see life through a different perspective and I am blessed.  I have been shaped and molded into an entirely different mom than I ever imagined myself to be, and it is amazing.

Often times walking this path of a special needs parent who has a child with significant medical needs, I am exhausted and struggle with things.  However, I realize how blessed I really am to have Lydia in my life and to learn about her perspective on life.  Being a mom, special needs or not, it is hard, it is exhausting, and often times very overwhelming.  We do things we don't want to do, things we never thought we were able to, and we learn unexpected lessons that seem to take the most room in our hearts.

I am sure that I will continue to battle selfishness every. single. day.  However, I pray that I understand how significant these moments are.  I am sure one day I will miss the smell of vomit and rocking a sick whimpering child.  Maybe not!?

"Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up." Galatians 6:9

Resolution Journey

It appears to be that time of year again.  The commercials are in full swing, the end caps at the stores are displaying weight loss items, self help books, and all sort of gimmicks to help you achieve your NEW YEAR RESOLUTIONS.  I know little about this tradition, but I know that I don't think that I have ever kept one new year resolution.

After coming home from the hospital, just days before a new year was to begin, the traditions of setting a resolution struck me as odd.  I had just spent five and a half months away from my home.  I found a new room that my family called home.  I spent most of my days hanging in an ICU praying my baby would live to see another day.  Now, finally at home, I have this child that I am trying to figure out what to do with.  Looking around the living room, new pieces of medical equipment was scattered all over.  There were cords and paperwork and phone numbers and burp clothes and feed pumps, it was not at all how I envisioned bringing my child home. 

The problem, it did not matter.  It did not matter what I envisioned, this is how God had planned it and at was perfect.  She was home and not much else mattered than that!  Praise God that for the first time in months, we were all under the same roof.  Praise God, the first time in months we could sit as a family without nurses and machines interrupting our thoughts and conversation.

I realized then that a new year resolution actually takes you on a journey.  I don't believe it is about the end result but the journey that you took, what you learned, who you are now, and what was taught to you that is the most important thing.  I realized that we are missing out by focusing on the end result when it is the journey that counts.

When I first heard of Lydia's diagnosis, Down syndrome, I was given a poem called Welcome to Holland.  Maybe you are familiar with it but it talks about wanting to go somewhere and you end up in Holland.  It is not where you intended but it is not bad.  Things are different, but there is just as much beauty and majesty as the other place.  While at first you may compare where you wanted to go to Holland, eventually you settle into your new life.

It is the journey that means the most.  Yes, I was nervous about many things with Lydia.  I have to say that her medical issues has overshadowed many of the typical doubts about Down syndrome.  However, now that we are transitioning into not as sick of a child, there are more and more things about Down syndrome that creep up and leave me in a place I don't like to be.  However, it is not the end result, it is the journey, the learning process, the shaping and the molding that is the most important piece to learning about your new surroundings, learning about where God has placed you.

There are many times that I sit and I compare Lydia to the other girls.  I know I shouldn't, but I do.  However, I realize more and more that Lydia is who she is suppose to be.  She may never intend to be the brightest scholar in the world, she may never be a six foot tall basketball player.  But she can teach you about joy, about simple things, about love, about laughter, and about being cute.  Some things are very similar to Ellen and Allison and others are completely different.  And that is just fine.  She is right where God wants her to be.

So, if I were to set new year resolutions for last year it would have been to read the Bible in a year and to lose weight.  Here is my take on both of them.  While I am currently losing weight, I probably have gained more weight than I have lost!  I will end the year on being three months behind in my read through the Bible in the year.  Does that mean that I have failed?

NO!  What I have learned is more valuable than accomplishing those resolutions (if I would have set them!).  I may have not finished my read through the Bible in a year, in a year.  However,  I do believe that God gave me the verses that I needed exactly when I needed them.  I know that I made a very diligent attempt at finishing in the year and I was leaps and bonds ahead of where I was the year before.  But, I also know that my personal relationship with God strengthened a lot simply because I was being more obedient.  No one success all of the time the very first time around.  I am not perfect, but I have created habit.  I am proud of myself for where I am.  See the process of teaching myself to be obedient to get up early and read the Bible, to put my relationship with Christ first, to realize how much better I function when I am walking in God's way, is much more valuable than saying I completed the Bible.  It was more than completing a check list, it was about walking a journey, learning and exploring my relationship. 

My weight.  It has been a battle for a long time.  I, however, do not want to get on a diet craze and crash.  In my life, I also know that food runs much deeper than just another new diet.  Feeding is always a struggle with Lydia.  I have learned so much about food and what it is used for for our body.  I have learned healthy ways of eating and managing stress.  I have learned why God made for and the purpose.  I have also learned a lot about faith.  Faith in God that He will provide, He will teach, and He will allow success in His time.

I can't quite put into words all of the things that I have learned myself about eating, but I know that I am in a good place.  Yes, I have lost weight and I have lost inches, but the most important thing that I have gained is a new perspective.  A new perspective on life and weight.  My weight did not just come on in a year and it represents pain and stress and running away from problems.  I knew that I needed to deal with a lot of that before I was able to successfully change my lifestyle and learn things in moderation.  I also learned that I need to know this so I can teach my children very healthy habits and deal properly with Lydia and her feeding issues.

I have to say that right now I am not be any thinner than when I started off last year, but I am healthier in so many ways.  I am in a great position physically and mentally (I'm in a good routine of getting exercise and managing stress, and eating for the purpose of nourishment and not just pleasure, I also am managing the stress of feeding Lydia much better).  It was a process to learn this, to unlearn what I had been taught and obedience to step forward.  This is an important step if I want to do this properly and honor God.  I can truly say I am happy with this progress.

Maybe none of this makes sense, maybe it makes perfect sense, but to me the new year resolution craze is silly.  Lydia and the life of Down syndrome has taught me that my expectations are only that.  Things and situations in life will happen, they will change you, and they will take you on unexpected paths.  By being stuck in one thought of thinking, you rob yourself of the journey; the most important part of your life.

I have found too, that some journeys are very difficult.  Sometimes you may think that you will be a mom for your entire life and your child dies suddenly, leaving you empty handed and on an unpredicted journey of grief.  You may think that you will have a healthy child and you learn about the diagnosis and it takes you on a journey of living life in the hospital, not knowing what will happen from day to day, it will stretch you and teach you and your path will look much different. 

No one can tell their path from day to day.  God has the entire picture and He is working everything for our good.  What I have learned about new year resolutions is to enjoy the journey.  Things often don't happen in a year and your path will more than likely take an unexpected curve or dip, but that is OK.  Learn, embrace, have faith, and hope in God that you are walking this path to be the person God intended you to be.

I pray that this year I can continue to fully embrace everything about having a child with 47 chromosomes, that I can continue to embrace the feeding journey and rock, and that I am obedient to God and the path that He chooses for me.  Here's to another year of Resolution Journey!

You Were Chosen

I was chosen for this journey.  This journey was thought out, carefully crafted and given to me.  This is my story, this is my life.  I have had thoughts in my head over and over about this chosen life.  I have many different thoughts that make perfect sense, but when I come to type there is nothing.  Yet, I have a push inside to write about this chosen path for me. 

I would have never thought that I would be sitting in these shoes, but I can't imagine my life any differently.  I would have never thought that I would want to care for another human being the way that Lydia requires, but I am lost when I am not caring for her.  What I never thought I wanted, I ended up needing and that is why I was chosen.

God does give us more than we can handle.  And that is because we were not meant to handle it on our own.  We were never meant to walk this life by ourselves, but with God front and center.  With God, all things are possible.  We have greatly confused that image.  I have learned that too many times to count on this journey.  I have seen what happens when I handle things by myself and I don't put God first.  It is always better when God is caring me, when He is helping me, when I am seeking His advice.  Without that, I fail, I struggle, and I mess up big time.

As stressful as the days are, as frustrated as I get with Lydia, as much as I question if I am doing anything right, as much as I struggle with advocating for Lydia; this is what I was meant to do.  This is where God wants me and He has a purpose.  While I may question and I may not understand, He sees the entire picture.

Our life is like a puzzle.  We can only see one piece at a time.  We are not able to see the entire picture.  We fumble and we fail trying to find our place.  We think we fit here and then something else comes up and we find that was not the right place.  Sometimes our pieces are so dark and it seems near impossible to be able to even attempt to find where the piece fits.  Sometimes we work on one side of the puzzle when we should be at the exact opposite corner. 

God, however, sees the entire picture.  He has created a masterpiece and we must trust in His plan that He will finish the good work He started.  He knows what the picture on the box looks like.  He knows where every piece fits together and He knows how they fit together.  We don't have to fumble around trying to find our place, He will guide us.

Even when we are in a dark place, the light will come soon and it will be glorious.  But we must not give up because each and every piece is needed to make the final masterpiece.  He works everything for the good of those who love Him.  Every trial, every dark spot, every circumstance all has purpose and meaning in His timing and in His plan.  We are not meant to understand but to trust and to allow Him to create us to be the servants He wants us to be.

As I have struggled a lot lately, I have thought over and over about this.  It is so true but so hard.  I think back to days before Lydia and that seems like such a long time ago.  Sometimes I cringe to think of the person I was before her.  Sometimes my life now is so much a part of who I am, I cannot fathom that life anymore.

The daily tasks of Lydia have been wearing me down.  Feeding her, trying to figure out what she will eat, making sure she gets enough to eat, juggling her health and education, managing her doctor appointments and her therapy appointments.  Trying to make time to have her just be a kid.  Trying to parent two other girls and making sure I am meeting their needs.  Trying to put time in on my marriage to make sure that is healthy (if that is not healthy than none of my other relationships with my kids are healthy).  And trying to find quiet time to study God's Word and let Him pour himself on me (I often struggle with this, but this is the most important part of my day).  And then with whatever little time is left, I try to work on me (keeping fit, eating right, taking time just for me, exploring hobbies).

This is the path that was chosen for me.  I have to remind myself of that every single day.  Some days I struggle with it.  Some days I want to curl up and cry.  My child is so far behind.  That is a hard pill to swallow at times.  I compare her to other kids with Down syndrome and see that she is even farther behind than they are and I wonder if I am doing everything that I should be doing.  I know I shouldn't do that, but this is reality.  I want the best for my child and sometimes I think that love is not enough (I know that's a foolish thought, but it's true).  **She is also on a chosen path, just for her.  She was not meant to have 46 Chromosomes, she was meant to have 47.  She was not meant to have a "normal" anatomy.  She is right where God wants her and she is teaching others about self confidence, happiness and true joy.  She also is right where she is meant to be!

Sometimes when we are sitting in a room with many doctors and we are trying to figure out what is wrong with Lydia, I feel like I am crazy.  They shake their head, knowing something is not right, but there are no answers.  When there are no answers I question myself, my ability, and wonder if this is all just made up.  I doubt when I should not.  But it makes me go crazy trying to think about what to do next.  I know people around me have given me those stares and seem to whisper behind me (I think this is probably just my insecurity but this is what I feel).  I try to convince myself I am crazy.  When in all reality, I am doing what God wants me to do.  He alone has placed me on this path and if I am looking to Him and following in His ways, then I should not doubt.

This is the life that was chosen for me.  With God's help I can overcome these doubts and insecurities, I can rise and become the very best mom to all of my girls; just as God chose me to do.  With God's help I can be the very best wife to my loving husband and I can be a faithful devoted disciple.  It is possible; but not on my own.

And to look to someone else's journey and judge is not fair either.  They were chosen for something different.  I feel like if I could understand this better, I may be able to help someone out and I may not feel so judged.  I don't think I ever expect someone to understand my journey, but I should not then try to understand someone else's either.  I can share my story in hopes that someone might be going through the same things and can get hope from my path. 

Sometimes it does feel lonely.  I have seen it all too often people pull away because they don't understand, they are scared of your circumstance, or because you have changed.  However, we must remember we all go through seasons and God gives us the blessing of true friends.  God is also always there for us.  He will never leave us nor forsake us.  Mary and Elizabeth in the Bible were given similar circumstances and they could support one another.  While God is the ultimate hope, it never hurts to have earthly friends for support and help.

But sometimes I forget that I was chosen for this journey and not someone else.  I am quick to judge and pass judgment.  I am quick to feel alone and I try to handle things on my own.  I forget I have the ultimate friend, I have unconditional love, I have forgiveness, grace, mercy, discipline, and if I am willing to obey Him, He is willing to bless me.

On this journey, I was chosen to learn certain things, not anyone else.  On their journey, they were chosen to learn their own things.  However, I can come alongside someone and be a friend, I can encourage and I can help.  I have to remind myself of this because I can get wrapped up in my own circumstance very easily.  I have to remember to continually seek to glorify God in every situation and circumstance.  I also have to remember that I am only accountable for my actions, so I better continue to look at myself and see how I can improve on me.

And because I was chosen I am a better person, I have learned some amazing lessons, I have faced some very unthinkable situations, I have been tested to my max, and I have failed, and I have been blessed.  I have changed who I am, how I think, how I love, and I have become a better person; all because I was chosen.

For me, it was one special child that God gave me so I could learn these lessons.  Sometimes I have to remind myself over and over and over in the heat of pain, frustration, anger, exhaustion.  But in the end, to see that smile, to feel her hug, and to watch her progress is such a blessing.  It really is all I need.  And when my eyes are rightly fixed on Him, I can look on even the hardest time and bring Him glory because He loved me enough to choose me to be right here!

A Heart of Gratitude

When I walked out the door on July 25, 2011 I knew things would change.  I didn't know if my arms would be holding a baby, I didn't know if I would find myself on bed rest for a week, I didn't know if my baby would make it, I didn't even know the fullness of my baby's struggles as they did not have a diagnosis.  I certainly did not know how I would change.

It is Thanksgiving heading into Christmas and everyone seems to be thankful and giving and caring.  However, one thing that I have learned is a heart of gratitude.  I would argue that it is more than being thankful, especially just around a season.  It is more than just giving to make myself feel good.  I would argue that a heart of gratitude is a lifestyle, is a way of living, a way of thinking.

Having Lydia has changed me, taught me, stretched me and even made me crazy!  But I am not the same person I was when I walked out that door and I never will be that person again.  We all experience things in life that completely change us, that make us stronger, that allow us to rely on God more, that restore our faith in humanity, that stretches us and changes us and molds us into the person God is creating us to be.  Each little hurdle, each celebration, each trial, each time of discipline brings us closer to who He wants us to be; if we only allow Him.

When I reflect back and think about who I was prior to walking out the door on July 25, 2011 I cringe because that person is so far from who I am today.  I was a very critical analyst of everyone who crossed my path, I very seldom thought of other people, I tried to gather everything for me and my family and stock piled it for a later date, I was constantly thinking of me and my family.  It brings tears to my eyes that I could not see the cold bitter life I was leading.

However, God gave me a life changing event in many aspects on July 25, 2011.  I did have a baby, but I was not holding that baby.  I was wondering how she was doing, what she looked like, I couldn't even imagine a future for her.  As they wheeled me to see her I cried because my arms ached.  When they pushed me into her room I was able to peer into her little medical crib and saw wires and tubes attached to this precious life.  Immediately a code was called and I was rushed back to my room, in another hospital.  There was blood everywhere.  It took them several hours for them to get me stable, but I wasn't able to see that little girl, she lay alone in a hospital room with no mom.  How my heart ached.

That was only the beginning.  There were surgeries and procedures.  There was sickness that kept her away from many people.  There were days that we never got sleep because we did not know if God would allow life for our daughter.  There were days where the doctors scratched their heads, consulted, and were unsure of the next steps.  There were many times when we saw life and death in our daughter.  There were many times that prayer and hope was all that we had.

God allowed life for her and we were able to bring her home.  Feeding issues set in.  We were told that she would never eat, that it would be better to place her in an institution.  How can I do that to my daughter?  She is mine and she was made just for our family.  We would be missing something if we put her in an institution.  No, that was not an option.

Long days turned into long weeks, which turned into long months, and eventually into years to get this child to eat and eat enough to get her to gain weight.  Struggle upon struggle we faced with her.  Doctors upon doctors we discussed things with.  Wait and see was usually our answer.  Praying and hoping that God would allow her to continue with life.

When I left that day, I had a bag packed for the hospital.  I had maybe a little more clothes that you usually would, but maybe just a week of maternity clothes and comfy clothes.  When I called my mom to tell her there would be a baby that night, the girls quickly packed whatever they could find and came.  A hotel would be their place to call home until we could find out more information.  A conference in town made them bounce here and there until there was room for us at the Ronald McDonald House. 

A home at last at the Ronald McDonald House.  We had really nothing.  While we had a home, it was not home anymore because my daughter was not there.  I could not enter that house, it was just a placed that was filled with stuff, not meaning anything to me anymore.  The house was under construction so there was really no finding stuff.  Our neighbors and friends were busily trying to finish the project we had started.  It was a place that was cold and so distance.  A small room with two twin beds, a small bathroom, and a tiny closet was our new home.  And it did not matter because that was the only place we could be together as one complete family.

As the weeks turned into months at the Ronald McDonald House the beautiful sunshine quickly started hiding more and more.  The leaves started showering us with a beautiful picture show every day and then there were no leaves on the trees anymore.  The wind howled and blew and the snow flew.  None of us had stuff to wear and I could not bring myself to that place that stored all of my once precious treasures, the place I once called home. 

There were people all over that were praying for us, that were providing gas cards for my husband to make a two hour commute one way to work.  There were people in our new community that supported the Ronald McDonald house and provided all kinds of needs.  There was a school that we were now part of and the most gracious of people who offered their houses for the many holidays we were there, who cooked us meals, who included my children in play dates and parties.  There were acts of kindness that were beyond my imagination that complete strangers would do for someone else.

My heart was being changed in ways that I could not explain.  Gratitude I have come to learn is not just something that you do, it is a lifestyle.  When my eyes are fixed upon God I am not thinking about myself and I am serving other people.  I am looking for ways to be the hands and feet of God.  It is so amazing and a huge lifestyle change.  It has also become a way to be content and happy.  And it is not just an outward appearance but an inward change. 

I have learned that things are just things.  Being in the hospital (and at the Ronald McDonald House) during a Holiday really makes you learn about what's important.  I remember one of the best Thanksgiving's we have had as a family.  The girls put a blanket on the floor of the hospital and played Cootie with their sister, we talked to a cardiologist about Lydia's Open Heart Surgery she would be having in three days, we prepared a feast for the nurses on the floor, and the girls hand delivered flowers they had made for all of the nurses.  We were so thankful for those nurses and that is what it is really all about.

I remember Christmas.  Lydia had just had Open Heart Surgery and was intubated and recovering.  I remember shopping that year and it was so different.  I would have paid any amount of money to buy health.  But that is not possible.  Instead I learned a lot about faith and was thankful for the breath of life our family had that day.  While we had gotten a few gifts, it was about the memories, the relationships, and the time we spent together.  I remember we got Gyro bowls for the girls.  Our nurse Kathy gave them ice cream in them.  When the medical director came in our room to talk with us, she asked if the bowls actually worked.  Just like clock work, the girls tipped them upside down while holding the sides of the bowls and the ice cream dropped on the floor.  We had a great laugh.  It is in moments like that that mean the world.

Gratitude is more than a day of giving thanks, it is a lifestyle that changes you in ways you cannot imagine.  Because of Lydia, because of this journey, I have been blessed enough to learn about it.  I have experienced a change in life that takes the focus off of me and puts it on others.  That is the only way that I can take care of my children and especially Lydia.  What a blessing it has been.

Each day we have been given is a gift, it is a precious gift.  I am so glad that I have been chosen to learn these lessons.  Lydia drives me to the point of going crazy, but she has taught me some of the most precious life lessons ever.  And I find it so amazing that such a young girl can teach such big things. 

Life is precious and when we learn to live in the moment, celebrate every milestone, and take nothing for granted, it is such a beautiful thing. When we learn that relationships are the most important thing and are worth investing everything we have in, we are rich.  God wants our time, He wants a relationship.  I have learned this and I have been so blessed because of it.  My time that I give to my girls and husband are never wasted.

May you have a most enjoyable Thanksgiving.  May you be thankful right where you are at, no matter what your circumstance is.  God bless you.