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!

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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