Thursday, December 12, 2013

A Holiday Perspective

I feel like I need to state a disclaimer before I start writing.  While most of my posts are primarily about Down syndrome, this one is no different.  However, our journey with Down syndrome includes many medical issues.  I know that not all children with Down syndrome have the medical issues that Lydia has encountered, but our journey includes that.  I wanted to point that out before I started writing.  I do realize this is not every one's journey with Down syndrome, but our journey includes all of the medical issues God has blessed her with.

The Holiday season is upon us and things are in full swing.  I have a hard time with the Holidays because of my perspective.  The reason why we celebrate Christmas is because of a baby lying in a manger; He was born as my Savior and yours.  He is the true reason for the season.

Having spent many Holidays in the hospital with a sick child, gives you an entirely different perspective on the Holiday, their meanings, and life in general.  I really can't put into words what that means or looks like, but I have it on my heart today to try to explain my perspective on the Holidays and what I have learned.

I remember very vividly two years ago Thanksgiving.  While we tried very hard to celebrate as normal, having one of your children confined to a bed with tubes and wires coming out all over is not normal.  Having two children full of energy running here and there in a small 9x9 hospital room adds to the frustration of being in this situation. 

We tried to teach our girls about giving.  Nurses and doctors and all other kinds of staff report to work just as it was any other day.  They spend their day trying to make a special Holiday for families that are spending their day there too.  We had the girls cook a Thanksgiving meal for the nurses and doctors and staff.  It was really fun.  They made handmade crafts and gave them out to the staff, and were really excited about giving to others.

However, reality struck once again as a cardiologist entered the room to discuss Lydia's upcoming (in three days) heart surgery.  There is no rest in the hospital.  People are sick and sick does not know what a Holiday is.  People are serving others 365 days a year.  People are forgoing their celebrations to create memories for others. 

But in that moment, as hard as it was, there was something special too.  A family came together.  I remember playing Cootie on the floor with the girls, I remember the girls climbing up on the chair and holding their sister, singing to her, and praying about how thankful they were for their new baby sister.  I remember feeling a sense of closeness and embracing those moments that were now our new memories of our baby's first Thanksgiving.  That's the same thing we would have done at home.  I realized that home really is where the family is.

While the "family" members that I thought would be present may have looked a little different, we still were able to make memories.  I was not with my mom and my sisters and my dad.  Instead I had a group of nurses who had grown to love my child as their own.  They had witnessed her in some of her worse days, and they had been there to partake in many family firsts.  They had been part of some of the most intimate memories; the first time a child latches to her mother's breast.  They were family and they still are.  They are part of Lydia's journey and they played an important role.  It does seem fitting that they were there to celebrate Lydia's first Thanksgiving.  Just a different group of people I had envisioned in my mind.

Walking back to the Ronald McDonald House, leaving part of me behind.  I felt guilty and angry.  Why did I have to leave her?  Why did she have to lay in that crib and not be part of her family?  Walking into the front doors and seeing a smiling face.  Seeing groups of people who "gave up" their Holiday to serve other people like us.  People who were facing all different kinds of battles, who also could not be with their family as they envisioned.  My heart was filled to think that someone would care enough about others to serve them and not partake in their own celebration, but to celebrate with me and my broken family.  My heart was full once again.

And Lydia, she was getting all of the attention that she needed from the nurses there.  They were busy holding her and making sure she had just what she needed until mommy came back for her.  She was not alone, she was with family too.  Different, but not bad.

I remember Christmas too.  My family went out of their way to make it special for us.  Lydia still laid in a hospital bed recovering from open heart surgery.  She had a whole new family for this Holiday.  While many of her other nurses checked in on her, she had a whole new group to impress and wow!  Not being there with the other girls as they celebrated Christmas with Eric's parents broke my heart.  Not being able to leave the hospital room to go buy presents for my children was so heat breaking.  Having a divided family was starting to divide my spirits.

However, I quickly realized that it is not about the presents at all.  My girls were thrilled to be at grandma and grandpas, knowing mom and dad were with Lydia.  See they were much wiser for their age than they needed to be.  They learned lessons far beyond their age and handled it with grace and beauty.  They amazed me and inspired me.  These are things that will shape the rest of their life.  They had to grow up quicker in some ways, but they actually understood the importance of the Holiday; being with the ones they loved.

I remember sitting in the hospital room and the girls had gotten Gyro bowls for Christmas.  The director of the Cardiac unit was in our room.  She said she still had to go shopping for her niece and was wondering if those worked.  Our nurse Kathy always spoiled the girls and she had put ice cream in the bowls.  Allison proved how well they worked.  She held the one side of the bowl as she turned it upside down and ice cream covered the floor.  We all laughed and laughed.  It was moments like these that we realized just how blessed we were.  We were a family making memories.  They may not have been the memories we envisioned, but they were memories that will forever be part of our journey.

I remember opening the door to our room at the Ronald McDonald House and seeing bags of toys for my children.  I sobbed because it was more than the presents.  It was the fact that other people took time to think about a family like ours and donated a toy.  It was a love sacrifice for someone to arrange that bag, thinking of our girls, and picking out the toys.  The toys had no significance, but the love and sacrifice that went into making that bag will always be etched in my heart.  I can't really describe that feeling, but I can't think about that moment without crying.  To see my children's faces was a moment I needed.  As much as they had grown up, they didn't.  They were kids embracing the circumstance head on, smile on their face, and joy in their hearts.  They were excited to take Lydia's toys over to her as well.

Christmas Eve two years ago was spent in a hotel room.  My family had traveled hours with a precooked meal and loads of presents.  They had prepared a special family gathering in a very unique situation.  I remember amidst the mounds of paper and presents I found my way to the bathroom and sobbed.  Part of me was missing.  My baby was not taking part in that moment, I did not have a memory with her on that first Christmas Eve.  She was laying in a hospital room and her family was celebrating and carrying on.  That's when Ellen came in and just hugged me and said it would be alright mom.  We will make a memory with this family and then go back and make our memory with Lydia.  What an amazing little girl that God blessed me with.  She was embracing our circumstance and making the very best of it; she was teaching me.

On Christmas day two years ago, we split as a family once again.  Our girls were being treated to several days in the Wisconsin Dells.  We were getting trained on taking care of Lydia.  We were preparing to bring our baby home.  She had spent almost the first six months of her life in a hospital, and we were bringing her home.  The BEST present EVER!  Two short days after Christmas, two years ago, we brought our baby home for the first time.  Once again, words cannot describe that feeling.  I cry as I look at the picture of me walking out of the hospital, pushing my daughter with no nurse or doctor looking over us.  Freedom at last, she was healed well enough to see the inside of her home for the very first time.

So my Holiday perspective is torn.  I believe in giving, serving others, and spending time with the folks that God puts in our lives.  Family sometimes is not blood related, but those who care enough to show you love.  I believe in making memories and having the very important things surround you.  Celebrating, singing carols, going to church, attending concerts, sharing Christ's love, giving and serving to those who need it. 

I know most people get bogged down by the hustle and bustle of the season.  Most people's perspective is so worn and off.  Why do you send Christmas cards?  I send them because as I am addressing them I am praying for each person, the family, and giving thanks that they are part of our lives.  I am sending them because I pray I am blessing them in a way as I am blessed when I receive a Christmas card.  I am sending them because I want to share my family with others.  I am not doing it because it is one more check on my checklist.  To me this is what Christmas is all about.

I don't make cookies with my girls anymore to just check it off the list.  I make cookies to make memories.  This is something that we missed out on two years ago.  And now I have another girl to teach this tradition to.  I make cookies so I can teach math to my girls, and teach them how to cook.  We love to make memories and my girls ask to do this.  It is not a checklist thing to me.  We also give our cookies away as a practice to give and serve others.  It is so fun to hear the kids ask to want to give the cookies, "mom, shouldn't we give them a goodie basket?"  It melts my heart.  This is what my Holiday perspective is. 

We take in Christmas concerts and spend hours driving around looking at lights, because this is what memories are made out of.  We spend time singing and making homemade presents that will be cherished for years to come.  We pick out or make a special ornament every year so we can reminisce in the years to come about the memories we made.  We pick out special gifts for our family and friends.  We don't do it on a check list, but we give from the heart.

I think one thing that our Thanksgiving and Christmas in the hospital did was change why and how I do things.  I think about the moment I found out about Lydia having Down syndrome.  It is different, just like celebrating a Holiday in the hospital.  But everything has purpose and meaning now.  The perspective has changed me as a person.   It is nothing that I expected, but I am so so blessed to have Lydia and to have had this journey.  The unexpected is a blessing like no other, it will change you and teach you.  The best "things" are the unexpected.

Tuesday, November 26, 2013

I Wish I Had Known

When I first received the diagnosis for Lydia; the possibility of Down syndrome, I wish I had known how she would change my life, the person that I would become, the joy that she would bring, how she would strengthen my faith, what she would teach me about life, the new perspective I would gain.  Instead I was filled with fear and the unknown; probably as each new mom feels once that diagnosis is given.  I want to take a moment to share with you some of the things I wish I had known prior to having her, prior to walking this journey.  My life is full to the brim and mostly because of the new perspective Lydia has given me.  As we come closer to this Holiday of Thanksgiving, my heart could not be anymore thankful.  Our family may have to make the hard decision of splitting up and taking the older girls to visit grandma and grandpa while mom and Lydia stay behind (Lydia is still not 100%).  But even in those tough decisions, there is so much to be thankful for...all I need to do is look at her slanted little eyes and I am filled with love and joy.  Who ever said that those eyes would be such a bad thing?  I find hope and love in her eyes and I think they are the most beautiful things I have ever seen!

I wish I had known just exactly how wrong my fears were before I had you, I would have been screaming in anticipation to start our journey with you.

I wish I had known just how strong you were, I would have sat by your bedside cheering you on, knowing God made you extra strong instead of all the worry and fret I had.

I wish I had known just how amazing one extra Chromosome is, I would not have let the fear of the unknown consume me just as it did.

I wish I had known the joy that would fill our hearts when you entered this world, it was joy that was never seen by this family before.

I wish I had known that you understood exactly the plans God has for our family, I would have embraced them quicker before trying to fight against His plans.

I wish I had known what kind of perspective you would have given me, I would have tried to gain it much sooner in my life.

I wish I had known the love that you would teach, the sacrificial and selfless love, I would have tried to learn that kind of love years ago.

I wish I had known how you would change me, but it was something I could not comprehend until you came along.

I wish I would have known how difficult sitting, rolling, grabbing a Cheerio was, I would have cheered the other girls on louder when they reached these milestones.

I wish I would have known how great life is when we slow down, I would have tried to slow down earlier.

I wish I would have known how much a mom can learn from her children, I would have paid more attention to the lessons Ellen and Allison were teaching me before.

I wish I would known what was important in life, but it took you coming into my life to teach me so.

My dearest Lydia, you have taught me more than I even know.  You have given me a new perspective, a fresh look.  You have changed me in a way I cannot even describe.  I feel like I am such a better person because of you.  You have taught me how to look beyond what I first see, how to live life to the fullest, how to find joy in the simple things, how to fight with your whole being, how to not dwell on those hard things, but be thankful in everything.  God knew EXACTLY what He was doing when He placed you in our family.  I am so grateful for the lessons you have taught me, for the love you have given.  God has allowed a special angel in our family to teach us lessons that we all needed to learn.  Often times we were too busy to stop and learn them or we did not think that they were important.

I have probably said the same stuff over and over before, but you have made me such a better person.  When I think back to what Down syndrome meant to me prior, I have to laugh at the fear and worry I felt.  I know that they were real, I know that I did not understand what the journey would be, but baby girl you have taught me so much and I am the blessed one.  God made our family complete with you.

Friday, November 22, 2013

Unseen

I have been struggling a bit on the emotional roller coaster of being a special needs parent (specifically with a child who has greater medical needs) and being able to understand any of these feelings.  As crazy as it sounds sometimes I wish that we had the support that we had back in the hospital.  There were nurses who not only cared for Lydia but acted like my therapist.  While they may not have understood what we were going through, they listened and they encouraged.  We had the support of many families who were/are walking the same road as us at the Ronald McDonald House.  We were actually in a safe and secure environment even when everything was crashing in on us. 

Even though we are not in the "critical days" with Lydia, I feel like some of these days are the loneliest days I have experienced and very, very tough.  Lydia is sick right now and we need to cautious.  She does not have the reserves to fight off a cold like Ellen and Allison.  We have to balance her fluids and eating and coughing and throwing up.  It is natural to us now.  But I can't express how lonely these days are spent rocking a child who is coughing and struggling.  While she may not be like this all day; there are times that are horrible, these are the unseen battles that we endure daily sometimes. 

Then there are the tough decisions that we make to split up the family.  The Holidays are here and we are suppose to travel and see family.  Lydia, when she is healthy, does not travel well to begin with.  Is it fair for us to take a girl who is compromised and put her in a situation that she does not do well in?  Is it fair to tell Ellen and Allison they can't see their cousins or grandparents?  Is it fair for us to split the family up once again?  What's the right decision?  The tears flow because it hurts so bad, I don't want to walk down this path again.  These are some of the unseen decisions that we constantly have to make.

But that is not the only thing, I hear those judging comments, I see the stares, and I feel the eye rolls.  It seems like everyone can do a much better job of raising my child than I can.  It seems like, at times, family and friends know better how to walk the life I walk.  I have learned how to be silent (that is amazing task for me too!) because it is an unseen hurt to these people.  But I find that I drift away from people and I lose relationships.  That unseen hurt is so painful to me, yet others have no clue.  

I know that not everyone wants to constantly hear about Lydia and our struggles, but I am unsure how to break away from it.  This is who I am.  She is so important to me and has changed me in some very profound ways.  There are so many unseen lessons that she has taught our family and so many unseen things we have learned that are now part of who we are.  I can't change that; that is just who I am.

There are so many unseen struggles from the outside eye.  To get your child the therapy they need, to battle several children's ongoing needs and wants.  To decide what bill to pay because the assistance, if you are able to get it never seems to cover the supplements, the therapies, the extra medicine, the braces, the special outfits, the special diet, the increased wipes or other supplies because of their needs.  The appointments after appointments that cause a babysitter for the other girls, the extra gas to get there or that unexpected hotel room. 

These are not complaints but rather an honest look into the unseen things that many special need (note: not all special needs have the extra medical needs, but my Lydia happens to, so that is the perspective I write from) parents go through.  These are the things that add extra stress on top of caring for a fragile child.  While Lydia is much like her sisters in many ways, there are other things that we need to concern ourselves with to make sure she is receiving so she has the same opportunities as her sisters.

There always seems to be a battle of the unseen things.  As people walk by and judge so freely without knowing the story, without really understand that struggle that is being fought.  Sometimes it is more than one can take.  It is a lonely battle often times because many people don't see and then they can't understand.

One thing that I have been trying to do, is simply encourage.  The gift of a note just letting someone know I prayed for them, a hug, a warm genuine smile, an unexpected card in the mail, a text with a Bible verse.  These are very small things that can make a huge deal in the life of someone, especially one who seems to be battling the unseen.  We can't understand always, but we can all encourage.

On days like these when I seem completely confined to a recliner, sitting in my bra and underwear (maybe TMI but this is a reality) because she keeps throwing up and we have both gone through several outfits, listening to her cry and struggling to find a way to comfort her.  Longing for a moment to go to the bathroom or to shower; not even dreaming of a minute with just me.  A simple unexpected note or pick me up can change the entire day. 

After all, we are suppose to be a community helping each other out when in need.  Sometimes we don't know we are in need until someone encourages us.  Often times I find the encouragement from my daughter.  But on the days when you feel like the world is judging you for the decisions you need to make for your child, when you feel like you are battling with everyone just trying to get what your daughter deserves, and you watch your child struggle; it is amazing.

I write this not because I am searching for something (but honestly I could use encouragement) but I write this more for the moms who are starting out, wisdom to say to someone who wants to do something for you, but is unsure what to do.  And if you were like me in the beginning, you have no idea what to say, you are too overwhelmed.  Ask for encouragement, ask if they would continually give you notes to keep cheering you on through this life long journey. 

I write this for the person who has allowed a special needs child get in the way of your friendship.  You're right, it is not about you and your friend anymore, it is about a child and what is best for the child; but by walking away you are missing out.  You are allowing your selfishness to rob you of one of the best blessings.  You don't need to understand, but you can encourage, you can support and you can make the difference that your friend needs.

I think we all can use encouragement.  But remember Special Needs Parents (especially us moms) fight a lot of unseen battles.  Some days are super long and sometimes almost unbearable.  Cheer them on and encourage them.

Tuesday, November 5, 2013

My Favorite Recipe

Some days are just exhausting.  There always seem to be so much to do and never enough time to do it.  Even for me; a stay at home mom.  There always seem to be bonbons left in the container to eat or one more show on that I want to watch (Just Kidding...some humor to add to my day that is oh so gloomy).  But there is a lot of stuff to get done and it never seems like you have the time to do the important stuff, you know just snuggling with your kids, just having fun with them.

Raising a child with special needs is no different at all.  The journey is different, yes, but the duties are no different.  Have you loved your child today?  Have you taught them about God?  Have you demonstrated unconditional love?  Have you taught them about forgiveness?  To me, those are really the basics that we need and the rest will come as it should. 

This weekend I had the honor of speaking at an event for the Ronald McDonald House.  It was quite an amazing event.  However, afterwards many people came up to talk to me.  I felt very uncomfortable.  They were telling me that I was inspirational, it was the best speech they had heard, that I was an amazing mom.  As good as that was making my ego feel (hey, I have to be honest) it made me rather uncomfortable.  I just shared my story.  I am no different than you, and I would pray that you would make the same choice to love your child, no matter what.

One conversation in particular stuck with me though.  As she was talking she said how do I manage all of the information?  How do you pick and choose what to do?  Aren't people always telling you what to do and judging you?  I manage information by binders which I seldom refer back to, I pick and choose by trial and error, and yes people are always willing to tell me what worked for them in their situation and it does feel like some days people are judging a lot more. 

I enjoy cooking.  Some days I wish I had more time to do it, but I enjoy doing it.  Each dish that I make is only as good as the recipe.  Each dish that you prepare you probably add or delete an ingredient or two.  I often do this because there are certain flavors that I enjoy more than others.  Sometimes it may be too hot for one of my children or a flavor that they are not particularly fond of. 

But how do you choose a recipe?  I often do by looking at the dish.  Sometimes I read through the ingredients to see if there are a lot of steps.  Sometimes I do by the amount of ingredients (and what is in my cupboards at the time).  Sometimes a friend or a family member has passed on the recipe.  Sometimes I heard about it from someone at church.  Sometimes it is a dish that someone else has prepared for me.  I think you get the point.  There are so many ways to choose.

What do you do when you have the recipe, when you are making it?  I ALWAYS add, modify, delete some how.  I cannot follow a recipe.  If I do, it never turns out.  I put my own touches on it.  I look at it and decide that this does not fit for my family and I make it fit.  I look at it and see if I can substitute another ingredient for one that I do not have.  And when it is done, it is not always like the recipe; but it is mine.  I have created a masterpiece of my own that fits my families tastes and preferences.

To me, parenting is a lot like that.  Actually life is much like that.  I talk to people, search out support groups, read information, read blogs, read books, talk to the professionals.  I do what I can to seek out the information.  I ask questions.  Once I have gathered that, I process what works best for my family.  I change and adapt according to ability level, the size of the room....you get it.

This concept is so easy, yet we all tend to forget it.  If everything was a cookie cutter recipe, there would be no variation.  The fact is you can give out a recipe for the same sugar cookie and every one will come back different.  Some will be decorated differently, some will have used real butter while some use margarine, some will have real vanilla, while others have imitation vanilla.  None of them are wrong, just different.  They are modified to what works best for one person.

We are like this as humans and I think it is always a good reminder.  I do what works best for my family.  I am always more than happy to offer the suggestions that work best for my family, but it is what works best for my family.  Just as we found in medicine things that worked with Lydia were completely off the path from what should have worked.  Just like how I parent Ellen and Allison and Lydia; they all require a different type.

I am not special because I have a special needs child, I am adapting to my situation as I pray everyone would.  I think life would be a much simpler way if we all remembered this.  We should not push our views and our ideas down other people's throats, we should pick and choose what works best for us.  We should be willing to offer but not pushy.  We should not compare ourselves to others, because we do what is best for us in our circumstance, while they are doing the same thing for them.  Life is full of choices (have you been on pintrest recently to see all of the different recipes?) and we all have the ability to make choices for ourselves.  Respect one another.

I do what is best for my family and I am counting that you do the same thing.  Tough lesson to learn sometimes, but oh so important.  This is a great reminder of me as I get stressed out sometimes when people have a different idea of how to accomplish something, of how to help in a certain situation.  Pick the perfect recipe for your family, even if you must modify!

Thursday, October 31, 2013

Last Day of Lessons Learned from Lydibug! Day 31

Well, October has come and is almost gone.  It has been fun writing down the lessons that Lydia has taught me.  I am a better person because of her.  However, the most valuable lesson that I learned this month was from a lady who chose not to look beyond a physical difference, a lady who chose to stay in a world where she closes herself off to learn some of the greatest lessons and experience some of the best blessings.  I can write today and say I am thankful for that experience.  While the words still sting and I will never quite understand what would lead a person to say something so horrible out loud, I appreciate her teaching me lessons too.

Just because October is almost gone does not mean that the job of spreading awareness stops.  As I was taught by this lady, there is still much work to be done.  Showing people that folks like Lydia are much more alike than different.  If we could all accept each other like children do to one another, life would be grand.  I had the opportunity to talk to a classroom of 3, 4, and 5th graders.  They were able to ask questions and I educated them about Lydia.  The learned, they asked their questions, and they faced their fears of the what ifs.  Every morning I drop my children at school, every one of those students line up to give Lydia a hug, to pick her up, to get "knucks" or a high five.  Lydia walks those halls like she owns them making sure to say hi to everyone.  That would be the picture perfect place.  Since it is not, we need to continue to spread the awareness!

A recap of the lessons Lydia has taught me.....
*The power of prayer is an amazing thing.  This is our life line to God who makes all things possible.
*When the situation is tough, turn up the music and dance like no one is watching.
*Having faith in God is our true foundation; without that we are just on sinking sand.
*Love is a sacrifice, love is a choice; love is not just a feeling.
*Lydia has unleashed a passion in my for creating awareness for Down syndrome.
*Giving is super important and giving beyond yourself is even better.
*I am to be an active and involved parent.
*SLOW DOWN and RELAX!
*Lydia has taught me how to have courage, even when the mountain seems too high to climb.
*Be comfortable in the skin you have, no matter what it may look like.
*Be informed, ask questions and think more objectively.
*Fears should not dictate our decisions; we need to face them head on.
*Determination....never give up!
*Small moments are a huge thing; learn to appreciate them!
*Remember what you prayed for and savor those moments; no matter how long/short they may be!
*True contentment!
*Judgment is a terrible thing.
*Sacrifice is a joyful thing.
*Joy does not mean happy all the time, rather it is a way of life.
*Think outside the box.
*Big or small, able or differently-able, we all have an important place.
*Value each relationship.
*There is still a lot of awareness that needs to be done, so keep on spreading the word!
*Take the high road, especially in difficult situations.
*There is always room for improvement in yourself, never settle.
*A smile has amazing power!
*The word possible says I'm possible!
*Imperfections are a blessing and they are perfect!
*Encourage one another.

There are many more lessons that she has taught me and that she will continue to teach me along the way.  I am constantly growing and becoming more of the person that God wants me to be.  I am so blessed to be on this journey.  Thank you for taking a moment to read the lessons that Lydia has taught me.  Enjoy the pictures.  A picture says it all...she is worth a million words, a million smiles, a million hugs, a million prayers!  She has a lot of value and she belongs in our family!











































Wednesday, October 30, 2013

Lessons Learned From Lydibug Day 30

I can't believe that it is the end of the month almost!  There are still so many lessons that she has taught me, but I believe she will continue to teach me daily.  She is such a blessing.  Today will be the last lesson that I am sharing.  Tomorrow I thought it would be fun to a do a recap of all of the lessons from this month as well as share a lot of photos of our little Lydibug!  Thank you again for reading and encouraging.  I love to write, even though I am not so good at it (I don't reread so often times there are a lot of grammatical errors and incomplete thoughts...so sorry) but it is fun to see that people actually read what I write!  Thanks!

Lydia has taught me the importance of encouragement.  I know funny because she does not yet talk so how can she encourage?  However, she communicates very well with her body and expressions.  You always know what is going on with her.  Lately she has been trying to communicate by mouth and I wish she would do far less of it because she seems to yell and grunt all of the time.  Mommy's ears could use a little bit of a break!  But she is a great encourager.

Right before someone is leaving in our house, Lydia picks up on it.  She realizes they are grabbing their keys or putting their shoes on or jacket on.  Whatever she is doing she will walk over to the door and give them a hug.  If for some reason it is not a hug she will start waving goodbye.  And they always get a smile to leave the house with. 

When one of her sisters gets hurts she always is there for a hug to them.  She pats them on the back and tells them it will be OK.  Before we go to bed she always has to give everyone a hug.  She is good at giving strangers hugs and waving at them in the store.  It always seems like it is someone who needs it too!  She always seems to know just the person or the time to send a hug or a smile to in order to be a pick-me-up to their day.

In just watching her interact with people you understand the importance of encouragement.  Because of this, I try to encourage those around me as well.  Because I am an adult, and hugs and smiles just are not as cute coming from me, it usually is in the form of a note or something.  It may take a little more time, but is so worth the effort.  I also like when people leave me encouraging thoughts, Bible verses, or comments on here or our caring bridge site and I think that maybe someone would like that.

The other day we received a box of cookies.  I had no idea where they were from or who sent them.  There was one sticker on there that read Sunflour Confections.  The return address was from TX.  Who do I know in TX and why would they be sending cookies?  Upon a little more investigating I discovered that it was part of the Icing Smiles organization.  Icing Smiles is a nonprofit organization that provides cakes to those children battling medical problems.  We had a sugar angel this year for Lydia's 2nd Birthday and she did the most amazing cake.

Well, I wrote them a thank you, both our new sugar angel and Icing Smiles to let them know that I really needed that pick me up.  (I have been a little blue and struggling a bit after last week and those unkind words!)  After sending the thank you note, I realized how important it is to say thank you, encourage others, and share your story.  Someone else also needed to be encouraged by someone sharing their story.  It is amazing the impact you can have on someone else when you take a moment to encourage, say thank you, or share your story.

Once again, lesson learned.  This has been a fun lesson.  In the hospital I wrote a thank you note to every nurse who cared for Lydia.  I wrote a note to every doctor who helped us out.  It was a small way to let them know that I appreciated what they did.  It was very therapeutic for me as well.  This is a lesson that I have learned and tried to apply as much as possible.  It is so important for us to encourage those around us.  It changes a whole day when I know others are praying for me, for our family, for Lydia.  Who will you encourage today?

Tuesday, October 29, 2013

Lessons Learned from Lydibug Day 29

Imperfections are a blessing.
Imperfections are perfect.
Imperfections are wonderful.
Imperfections are teaching moments.
Imperfections are part of us all.

Lydia has taught me about imperfections and mainly mine.  See when I first learned that I was carrying a child with Down syndrome, my mind could only wrap itself around all of the imperfections that I read about.  The possibility of low lying ears, slanted eyes, low muscle tone, cognitive delays and the list goes on.  I read about the increased risk to many more medical issues.  My mind could not get past her imperfections she may have.

As I sit here now writing this I just think about how silly that is.  I think about what if my husband could not look past MY imperfections?  What if he only saw an overweight woman who has thinning hair, a huge scare on her forehead, a huge beauty mark on her face, a birth mark that takes up the entire side of her leg, THUNDER THIGHS, cottage cheese legs, and the list goes on.  So that is probably more than you needed to know; but hopefully you get my point.  What if he could not look past my short comings as a person.  Someone who use to have tendencies to lie, someone who was completely and utterly selfish, someone who let money direct her life, someone who was not very kind because she put herself first all of the time, someone who was critical of everyone else, and the list goes on and on.  What if he could not look past the fact that I detest feet, that I am terrified of heights or that I like to eat sweets.

Take a breath, that was a bit of an honest look at myself and I am horrified by it.  I am not a perfect person; not even close.  I have so many imperfections it is scary.  But my husband chose me to look past those and love me anyways.  I am sure I am not an easy person to love (bless his heart) but together we make a team, together we can overcome any hurdle.  Love is a choice and he chose to look past those imperfections.

I look at Lydia's imperfections and those are the things I am completely in love with.  I love how flexible she is.  She can get herself into the most unusual positions and it is cute.  I love the look of her eyes; especially when she rolls them (remind me of this when she is 15).  I love how her belly tells a BEAUTIFUL story of her life.  I love the sweetness of her personality and how she looks through life.  I love her, all of her imperfections.

See, the extra weight that I carry is still from growing and birthing three children.  The last put a little more stress on my body and then in my life and I still have not had the opportunity to work on getting that off.  The thunder thighs is something that I was blessed with along with the cottage cheese.  That is who I am, how I was made.  I do not let that stand in my way.  I try to be healthy and stay active, but that will not hinder me by any means!  Just like Lydia's slanted eyes or one crease on her hand or her low muscle tone.  None of that will slow her down or get in her way...that is just how she was created.

She may be a little slower at learning things than the other kids, but there are certainly other things that she is not slow at catching onto!  She has figured out how to be sassy and silly just like her sisters.  She has figured out that whining may or may not get her things.  She has figured out how to walk and get into EVERYTHING.  These experiences and things make her who she is, they complete her character.  She is a blessing.

As I reflect on the list of who I am, my imperfections it is long and really quite embarrassing.  However, a lot of things that I use to be have been changed because of Lydia.  A lot of things that I have not been proud that it was part of me, my daughter Lydia has taught me lessons and the importance of being a better person. 

Imperfect some may say, a better place without her, a simpler life for her family if she had not been born.  To me, when I put it in black and white, I would be very sad if I was the same person I was before Lydia, I bet the world is happy too that she came along to make her mom a better person.  Sometimes we need other people's imperfections in our lives to make us realize our own imperfections. 

Celebrate your imperfections, be proud of the person you are.  The words that were spoken at the Down syndrome Awareness Walk this year are still etched in my mind.  The ambassador that spoke was so proud of who he was, he was happy with the person God created him to be.  He knew there were things that he struggled with, but he was OK with that, he was going to try even harder to make sure that he too could accomplish that.  He knew his strengths, where he excelled and he knew his weaknesses too.  It balanced him and completed him as a person.  Simply beautiful to me.

All of Lydia's so called imperfections make her who she is.  All of her imperfections make me a better mom and a stronger person.  She has changed me in some very profound ways.  I am going to try really hard for my imperfections to be something I am not embarrassed of, but proud of because they make me, me. 

We all are imperfect in some way, shape or form.  She is no different there.  What she has, however, is an amazing outlook on her imperfections.  How she carries herself and what she does with those imperfections is what sets her apart.  She is a blessing in disguise and I am honored to be her mom. 

What will you chose to do with your imperfections?  I am glad that my husband looked beyond those imperfections and chose me and decided to love me anyways.  Because of that love we have been blessed with Lydia.  Because of that we have been taught many valuable lessons.

Monday, October 28, 2013

Lessons Learned from Lydibug Day 28

Lydia has taught me that in the word impossible it really spells I'm possible.  Despite what others may say aloud (even if you can't believe that they would really say that), what others will think, how they will judge, or what the silent stares may say....Lydia has done far more than what I will ever accomplish and more than what most others will do in a lifetime.  Lydia has defied life itself with fighting constantly to be where she is today, she has overcome stereotype after stereotype just by being who she was created to be and she continues to teach me and those around her about themselves and life.  She is simply amazing and she is possible.

With each task for her it may seem like she can't.  However, she will work and she will fight until she can accomplish it.  For someone else it may not even seem like a big deal, it may not even seem like a task; for Lydia it may be a mountain, it may seem impossible, but she too will climb it when she is ready, she will accomplish it on her own time.  She may fall a couple hundred times, she may lose her footings more than a time or two, she may get caught in the elements, but she will never give up.  She constantly picks herself up and keeps going.  She is on no time schedule, she is not comparing herself to anyone or anything else, she is not meeting a deadline, and often times she really does not matter what it takes to do it.  She does not care how she looks she does not even care what others thinks.  She focus in on her task and does what it takes until it is complete.  She is possible and she teaches others how to think they are possible too.

When I think that I can't climb this next mountain that is staring me in the face, when I think that I am completely exhausted, I think of Lydia.  With each task she has accomplished, with each new milestone, it did not matter how many people said that she could not do it, how long it took, how many times she failed; she never gave up.  She kept at it until she could do it.  That is what I call inspiration.  That is what I call complete victory.  That is what I call worth.

She sees life through an entirely different lens.  Some may say it is distorted, it has no value, it is worthless, it is R****ted; I call it beautiful.  I wish I had that same lens.  She may never accomplish some of the things that her sisters accomplish, however, they will never accomplish what Lydia accomplishes either.  See we can look with a judging lens over her and try to discourage her, but that still will not keep her down.  We can look at her with an open lens and try to encourage her and see how much she amazes us.  If any child is look at with "I'm Possible" every child can flourish...she is no different.

Lydia is content with her lens, with who she is, her accomplishments, her talents, her abilities, with how God created her.  She does not want to change that, she wants to share with you who she is, what she is able to do, and laugh with you.  She wants to know you and create a friendship with you.  I am trying to learn from this, I am trying to be more like that, however, I would LOVE to see the world through her lens, so pure and untainted. 

I am so blessed to have Lydia in my life and continually teach me how to be better, how to live life being content just the way you are.  I am so blessed that she is patient and kind and willing to share her gifts she was given so freely.  I am so blessed, even on those days that it is hard.  The impossible always will be I'm possible no matter what.  The impossible will always be possible when I am working hard.  Thanks Lydia for another very valuable lesson.  It looks like mom has a lot of work ahead of her implementing all of these valuable lessons.

Lessons Learned from Lydibug Day 27

I was completely exhausted from vacation last night to write, so I am catching up this morning.  One lesson that I need to remember over and over is that simple is better.  I always find myself over complicating things and then they never turn out how I want them to anyways.  I get frustrated when I plan a big old fun day to find that the girls only wanted to play in the dirt.  I ruin the memories because my ego has been bruised.

Lydia keeps teaching me this every single day.  It is not about the toys, but the boxes they come in that are so much fun.  It is not about the big vacation that we can go on, but about the number of outdoor play sets we can find to play on.  I am still caught up in the dream life that we have to have bigger and more for it to be better. 

Just getting back from vacation and I am learning this over again!  I am drowning my sorrows of not being able to do this or that because a certain child does not travel well.  I am grieving the fact that we may never get to do this or that.  But what I am forgetting is the memories that we made.  The fun that we had and the time that we were able to share...no matter what we were or were not able to do.

See Lydia nor the other girls really care what we do or where we go.  We were able to stay in a motel.  That means that they were able to watch TV (we don't have that at home) and make forts and it was a new place to explore.  They were able to eat donuts for breakfast and snack all day long.  It meant that we were able to go to places that we had not been to before and visit a good friend's shop.  It meant that we were able to play on new playground equipment and go hiking through the woods.  When asked what the best part of the trip was "It was just spending time with my family."

I get so caught up in the big and the better part of life and I miss out on the small moments.  Bigger is not better.  I don't know if the same goes for your family, but after what our family has been through, bigger is not better.  Those nights of putting our Pj's on early and snuggling together on the couch to watch a movie, it is then that I see the biggest smiles on their faces.

Lydia reminds us over and over that she loves her home and she does much better at home than she does anywhere else.  Our house is not big and it is not fancy, but it is safe and comfortable.  It is what she knows as home.  It does not have to be big or fancy but it does have to have her sisters there and her parents.  It does have to be safe and comfortable, simple just as she knows it.

I am battling this lesson on so many levels, but when I learn, I will find joy and peace like all my girls have.  They make the best out of any situation, they are content in the small things, and bigger is NOT better for them.  See, to have the simple things around; love, family, friends, a feeling of security.  I would have thought that I would have learned this after everything we have been through, but I battle this one.  Simple is the best.  Family means I am rich.  Happiness is having that sense of security. 

Once again I need to be reminded of this simple but profound lesson that less is more, simple is better and big is not always the best.  Being together as a family, having each other's love and presence is the most important thing for them and us.  Thank you Lydia for reminding me and I am sorry, but you are going to have to teach this one to me over and over again!  One day, I hope, I will understand this critical lesson just as well as you do!

Saturday, October 26, 2013

Lessons Learned from Lydibug Day 26

As the days go by I am struggling to continue to explain why Lydia makes me better.  There is lesson after lesson that I have learned from her and as I am happy to share them, sometimes I feel like a lot of the lessons are very similar, yet very different.  Sometimes I feel like I am repeating myself.  But I cannot help but try to encourage someone who just found out that their baby may have a little something extra, to try to help others see that Lydia is more alike that different.  However, it is not up to me to change people's minds, they have to do it for themselves.  And the only way to really do that is to surround yourself with people who are different than you.

I remember that it was scary learning that our child was different.  And the only reason that she had the label of different is because society is trying to lump all of these beautifully created people into one category when they really can't.  There are trends and risks for people who are extra special, but my other children have that too....there just is not a HUGE spot light that creates attention.

I guess what I am trying to say is that because I was vulnerable, I opened myself up to a new experience, a new challenge, I have been blessed.  Because I said yes I will love you unconditionally for who you were created to be I have been blessed beyond my comprehension.  However, you must first get to the point that you are willing to expose yourself in such a way.

If I look at it like that, I cannot expect others to fully understand the goodness of Lydia until they want to open themselves up and experience the blessings.  PreLydia days I probably was not so open to people who looked different, acted in a different way, looked a little different.  I probably saw a child acting out and thought that they were not properly disciplined instead of now I am more open to the possibility of something else.  I think if we are all honest with ourselves we would have to admit that.

I am blessed because I said yes.  She has taught me stuff beyond what I thought was possible.  However, I am in a teachable place because I did say yes!  That is a great spot to be in and I pray that I am able to stay here.  God is using me and growing me because I am open to that.  Lydia has taught me that just because she was born.  I hope that makes sense.  But we were given that choice (there was no choice for us because I do not believe in abortion and that would never be an issue for our family no matter what) when we found out that there may be something different with our baby.  At that very moment I was teachable and I have been learning lessons about myself and life ever since then. 

Thank you Lydia for showing me a whole new path in life, for allowing me to look at a circumstance through much different eyes.  Thank you for allowing me to be a better person and constantly growing.

Friday, October 25, 2013

Lessons Learned from Lydibug Day 25

The power of a smile.  I never realized the power of a smile until I had Lydia.  While I LOVED when my other children smiled, it never had quite the impact of Lydia's smile.  I think there are several reasons for this.

One, when Lydia smiles, she uses her entire face.  Her smile can be seen in the darkness from anywhere.  It is amazing how much her smile lights up.  She smiles with her eyes, her nose, her cheek bones, her forehead, her eyebrows, her ears...her entire face lights up. 

She feeds off of other people.  As soon as she sees someone she just lights up.  And it is not half heartily, but she does it with all of her being.  She makes sure the person is look and flashes that cheese ball smile that you can't help but fall in love with.

To me her smile means that she has survived.  I have watched her endure so much.  She has battled through surgery after surgery, she has been dead and alive in the same moments, she constantly had people poking and prodding and her, she was always made to do something that she did not want to do.  She has overcome that and not just survived, but she has a BEAUTIFUL smile on her face too.  She is proud of that and she can smile about it.  It is not a smile that holds grudges because she feels sorry that she had to endure everything, not a smile that is holding back because she thinks that she is of less worth; but a smile that radiates confidence and self pride.  A smile that was created to light up the lives of those around her.

I am told often that people could just look at her smile and it can turn their day around.  People have asked me if I will just bring her by their office so she can put them in a good mood.  To be able to have that much of an impact on people's lives is simply amazing.

I am blessed to have that smile around me every second of the day.  I usually don't take it for granted either.  I usually can't help but smile back at her and hug her.  Something about that smile that takes my breath way.  Something about that smile that is simply amazing.  Something about that smile that is nothing more than a miracle!

Thursday, October 24, 2013

Lessons Learned from Lydibug Day 24

The more and more I thought about what happened yesterday, I couldn't help but see that it was a blessing in disguise.  While the words hurt and sting, I know my daughter is worth more and I know that I don't have to prove that to anyone.  It is almost like a hurdle that I had to climb over to get to a better spot.  I know that I will never be able to change every one's mind, but I would ask that everyone at least give people with DS (or any disability for that matter) a chance before judging.

However, I think when something bad has been done to you the feeling is horrible.  But if you take a look back and reflect things are not always as they appear.  I have been asking how many times in my life have I done something like that?  How many times have I said something before knowing the whole situation?  How do I treat other people?  What else is happening in my life that is not God honoring?

I believe that when you can get to a place in your life like this, when someone has done something mean to you and you can ask yourself what can I learn from this; I believe that you are growing and the Holy Spirit is working in and through you.  I know that there are so many nasty things in my life that I must take care of before I start looking at other people.  I have an awareness of how my feelings and actions affect others and it hurts me when I hurt others.

God is always using obstacles in our lives to teach us and grow us.  We miss out on these opportunities because we are consumed with ourselves, feeling sorry for us, or trying to place blame on someone else because it is easier than looking inside ourselves.  We are our own worst stumbling block in this manner.  We miss out on blessing after blessing because we feel we know better.

Yesterday as I was sitting on the couch, Lydia was playing with my hair.  She was stroking her fingers through each strand of hair.  At one point, she decided that she would not be gentle anymore.  I said ouch and told her to be gentle and nice.  Her bottom lip immediately came out and she felt bad.  She hugged me and said sorry.  It hurts her to see others hurt. 

She did the same thing with her sister.  Her sister fell and hurt her knee and was crying.  Lydia stopped what she was doing and walked across the room to hug her and pat her on the back.  It did not matter what she was doing, she heard someone was in distress and she wanted to be there to comfort.  She wanted to be there to help out.  What an amazing thing to witness! 

I realize this way of thinking is not very popular.  Yelling, punching, screaming, saying hurtful things usually are our first reactions.  However, if we give into these things we are no better than the person who did it to us first.  The hard thing is to take the high road and walk away and pray for that person.  We are to love our enemies too!

While I am far from being perfect, God is working on me.  He is constantly giving me these situations to learn.  When I walked into that store last night (Lydia was not with me), I held my husbands hand and held my head high.  I am stronger because of these words.  I am stronger because of the hurt.  While the sting is there and sometimes catches me off guard, I know that I am strong; I know that my God is bigger than any situation.

Lydia is constantly teaching me how to be a better person.  I need to remember that I too am not always a kind, caring person; nor have I always been nice.  This is my life now and I cannot expect everyone to understand Lydia (or disabilities) the way I do.  I too had an adjustment period, while I always loved her, there is that unsettling feeling and fear of the unknown and differences.  I can ask for a chance from people, but some people are unwilling to give that too.  So I will go confident in the journey that God has given me and continue to question in the difficult situations what I am suppose to learn!

Wednesday, October 23, 2013

Lessons Learned from Lydibug Day 23

Today my post is going to be a little different.  I feel very compelled to write about an experience that happened this morning.  After all, writing has become an escape for me.  I really don't care if people read what I have to say, like what I have to say, or comment about what I am writing about; it is a great way for me to escape from my life for a moment to just breathe!  I enjoy it and it does make me happy that some people read what I write!!!  So I felt like I needed to address this situation and the more I thought about it and prayed on it, this situation allowed me to put into practice some of the things that Lydia has taught me.

This morning I went to the store.  I really had not much to do today, other than pack, and I was not looking forward to that.  I thought that Lydia and I could enjoy a little shopping.  I have NEVER been embarrassed to take her out and there has never been a fear of taking her out.  As I entered the store, I put her in the cart.  I heard "A baby like that does not even deserve to be born."  I turned to find a lady walking towards me and I said "Excuse me!"  I wanted to make sure that she in fact was talking to me.  Lydia was sitting in the cart, chatting, smiling, and waving.  She brushed past me and said "You would be better if she was never born."

I sat there, jaw on the ground and tears streaming from my eyes.  I could not speak, I was completely stunned.  No moment to come and talk, no time to say anything, just brushing past and judging my child and my family.  I was frozen in that moment unsure what to do.  I was trying to process how someone could be so mean.  I picked Lydia up out of the cart and hugged her, sobbing and made my way to our car.

I held on to her and just sobbed.  She hugged back so tightly as she knew something terrible had happened.  She pulled away for a second and smiled at me.  Then she pulled me closer.  We danced the whole way home as I sobbed.

I came inside and texted my husband who immediately called me.  He asked who this was.  It was no other than a passerby who clearly was not tolerant of someone with Down Syndrome.  I said that I realized it was just words, but they stung and still sting.  I know that her opinion does not matter, and there will always be someone who is willing to put in their two cents, but wow that was hurtful.  I said that I was sad because I did not even have a chance to educate this lady about who Lydia is.  My heart actually aches for her.

I don't know this lady and I don't know her situation.  But I pray for her.  Maybe she experienced a huge loss, maybe she aborted a baby with Down Syndrome, maybe someone close to her was institutionalized because of DS, maybe she lost someone she cared for dearly who had DS, maybe it is just complete ignorance.  I am not sure what the case is and I never will.  But I pray for her.  I pray that she would understand what a blessing a child/adult like Lydia is.  Differences yes, but likenesses oh yeah!  She is more alike than different.

As I have thought more and more about this situation, about these lessons I have been writing about, about Down Syndrome awareness month what a great situation.  See, when I got home I shared a picture on my Facebook page of Lydia smiling away in her car seat.  I wrote a small description about why awareness is so important.  That picture has gotten shared a couple of times, but maybe it will be viewed by someone who it will affect.  Someone who was unaware of DS prior to that picture.  So maybe some good will come out of this.

Discrimination is a horrible thing and it will be something that Lydia will most likely encounter for the rest of her life.  Believe me, I am trying my hardest to do what I can so she does not have to feel the wrath, but discrimination is present in all shapes and forms.  However, it is important that I handle it in a manner that I am able to teach her to do the best thing.  I need to always be a teacher to her.

Yes, thousands of my things went through my head of what I wanted to do, what I wish that I would have done, and what I hope would be done to her.  However, I am so thankful that God quieted my tongue, He made my feet as heavy as cement, and gave me tears that I could just turn and walk away. Even at the age of 27 months my child is learning from me.  I taught her that words can really hurt, but it is better to walk away and pray for that person than scream back.

The could of, would of, should of set in about educating this lady.  However, I truly don't think that whatever I would have said would have made a difference.  She did, however, look me right in the eye and she saw that hurt she caused.  She also saw my daughter; her contagious smile and her wave that could melt even the coldest person's heart.  Maybe this image will be enough to cause her to reevaluate herself and maybe change.  But I am only accountable for my actions and not hers.  Hard hard hard thing to understand in a circumstance like this.  I do think that education with someone like her is not always the best thing.  But just standing strong sends a much stronger message.

As tough as words are, as hurtful as it may be, we must behave in a way that is appropriate.  If I called names back and I said hurtful things to her, I am no better than she is.  Being uneducated about Down Syndrome is a horrible thing in my mind, but not being taught how to keep your mouth shut, or respect others is just a tragedy.

I am thankful my other girls were not there to hear that.  They have been around to hear some pretty nasty things before.  But each time we try to teach them how to be proud of their sister, no matter what.  Just like they are suppose to be proud of themselves no matter what others say about them.  Each time is a teaching moment.

In this moment, I was thankful for all of the lessons that Lydia has taught me.  I know that she would have not acted much different than what I did.  She does not like hurtful words and she would have cried too.  I know that she would not have spouted anything back that was nasty or unkind.  Lydia has taught me how to stand up and be strong, how to be courageous and compassionate.  Lydia has taught me that it is better to take the higher road even when the other person is clearly wrong.  I am learning some of these lessons and I am applying them...sometimes.

So, I hope you continue to create awareness about Down Syndrome.  We have a long ways to go yet, but we are gaining a lot of ground.  We have gone in the store many, many times and have never had this happen.  Usually she gets all of the attention and I hear how cute she is.  Usually everyone loves her to death and it is hard to make your way through the store.  I am thankful for that.  But I do think that we need to continue to educate.  And not just about Down Syndrome, but anyone who happens to be different because God created them in a special way.  She is not a mistake, she is not deformed, she is not less of a being, and she certainly deserves everything anyone else gets; after all she was created from the same loving God that created you and me.  She is joy, she is laughter, she is the light of my world, she is life, she is love, and she is my delight!

Tuesday, October 22, 2013

Lessons Learned from Lydibug Day 22

Today's lesson that I want to share with you is about relationships.  Lydia has taught me a lot about relationships.  I thought that I was pretty good with relationships and then she came along.  I had to learn how to step outside of my comfort zone and really listen.  Something that I am not good at; listening.  She taught me how valuable relationships are and how important they are to our existence.  She taught me about weathering relationships in hard times and in good, in stressful situations and in easy situations, and with people you like and people you don't.  It is all important.

Being in the hospital is no fun at all.  However, it is much more difficult when a doctor who is caring for your precious little one has a bad bedside manner, or you and the doctor just don't get along or see eye to eye.  However, even in these tough situations when emotions are running high, you still have to get along.  Somewhere, and often times it falls to the parents shoulders, must compromise or "pretend to agree" for the sake of your sick child.  Sometimes you don't agree with how they treat your child, how they interact with the siblings, how they treat you, how they talk down to you; however, you still need to have a working relationship with them, there needs to be proper communication so the goal at hand can be accomplished.  Tough, but it can be done.  And it will be done with that is your child laying there.

You soon realize that screaming and yelling is not the way to handle it.  You soon realize that sometimes being silent is better than talking over them.  You soon realize that you can get what you want (or what you child needs) when you are in a good relationship with the doctor or the nurse or the therapist or the school.  Teaching yourself how to be effective in relationships is really an art.  Thanks to Lydia I have realized that and I have started working on that.

A marriage in a stressful time is really hard.  Days when you are upset with what is going on at the hospital or you just want to be out of the situation, it is so easy to take it out on your spouse.  However, by talking through your emotions, and listening, and just crying at times are much more productive ways to release that extra emotion.  Somehow God just carried my husband and I through these tough times in the hospital.  Our marriage has been greatly strengthened.  I can't really explain it but by allowing God to work in and through us, we are much stronger by enduring months in the hospital than we were before.  And very few times did we not honor one another.  Just another great miracle that we were able to experience from God.  But we have learned how to respect one another in good times and in bad. 

Last night we had one of our CICU nurses come to our house for dinner.  After almost two years we have a friendship with her.  She drove the 45 minutes to our house and hung out with our family.  She is just a wonderful wonderful nurse.  But again, Lydia taught us the importance of having relationships.  She taught us the bond of lasting friendship.  This nurse has gone above and beyond the call of duty many times and Lydia was extremely blessed to have her care for her.  We are beyond blessed to be able to call her friend.  Because of Lydia we understand better how important relationships are.

Relationships are the key to most everything in life.  Because of what Lydia has taught me, I have a better relationship with my husband, my children, my mom, my mother-in-law, my dad, my father-in-law, my sisters, my nieces and nephews.  I understand how fragile life is and that my silly little battles just are not worth it.  It is better, often times. to forget my small gripes for the sake of the relationship.  I am so blessed that God loved me enough that He gave Lydia to our family.



Monday, October 21, 2013

Lessons Learned from Lydibug Day 21

I realize that Lydia is still young enough that the world has not reared its ugly head at her yet.  Society has yet to influence her too much (I realize it is all over).  However, there are differences that I notice about her than her sisters at this age.  She has a presence about her that is much different.  She is completely confident, proud, and comfortable with who she is.  There is not a shyness to this about her at all.  She is just completely satisfied with being Lydia.

I think it is wonderful.  I know that I had talked about the confidence that she has, and about being comfortable in her own skin, but I am talking about being proud of who she is.  She understands what she is good at and is confident in that.  She does them well.  She will try the things that she typically does not succeed in, however, you can tell that she knows what she does well and she is very proud of that.

It reminds me about the Bible when it talks about the members of the body.  We are all important no matter what we are.  Not all of us can be the heart or the brain, some of us are required to be a nail or a strand of hair, a nose or an ear.  No matter what the part is, we are needed and we are important.

If you don't think that a strand of hair is important, think back to a picture and you noticed that your daughter's hair had one strand out of place.  I bet it bothered you.  I have been there too!  Even the smallest part of our body, when not working properly, can hurt us in a big way.  This is how God designed it, big or small we all matter.

It is like Lydia completely understands what she is to do and she is doing it well.  So if her service was to set up the chairs for Sunday service, she does that to give God glory, does it with a smile on her face, and she does it in a way that you would think it is the most important job on earth.  She does it so well that you want that job because you are now thinking setting chairs is that important.  Whatever it is that you do well, you are do it awesome, not complain and give glory to God.

How amazing is that?  I have a long ways to go on this one.  I am still completely lost at my gifts and what I am good at.  Most days I long to do something cooler than what my gifts and talents are.  However, if I recognized what I was good at by being proud of the person God made me, and I did what it was that God designed me to do, and did it well; I would probably feel like I had more of a place.

It is amazing to me that she has this all figured out in a place that says she has no place.  What a backward place we live in.  Our society, well not as much as before, says she is a burden, she does not have a place, she will bog our family down.  However, if you look at her, get to know her, she knows exactly who she is, what she can (and can't) do and she is proud of that.  A lesson that we all need to learn.  We need more Lydia's around to make ourselves better!

Sunday, October 20, 2013

Lessons Learned from Lydibug Day 20

There have been so many lessons that Lydia has taught me and pretty much each day I think of more and more.  However, at times, when I sit down to write, I struggle with what lesson I want to write about or the lessons have escaped my mind.  So I asked my husband this morning what lessons he has learned from her.  He replied saying that he has learned a lot but have not applied many of them.  I had to laugh because I try to apply them, but I also fall short of many of these lessons.  I did find, however, that it has been very good to write them down and see all of these things that she has been teaching me and our family over the past twenty seven months.

I am sure that if you write down the lessons that you learn with any situation, it would be very eye-opening to you as well.  I would encourage you to.  That is why we make mistakes.  God wants us to learn from our mistakes.  He is so very patient with us and often times teaches us the same lesson over and over until we do learn.  Some are easier to pick up on and others take us a long time; maybe we will never get it in this lifetime.  I am thankful that God loves me enough to put me in situations to learn and grow.  He does it for our good.  I have a hard time with that most of the time (just swing by on any given morning when I am attempting to feed Lydia) but when I have the opportunity to reflect it is very eye opening!

Today the lesson that I want to share with you is about thinking outside the box.  I have to say somewhere in my life this was like a coined phrase.  It was the newest bandwagon to jump on.  I think, if I recall correctly, Taco Bell had that motto of thinking outside the bun.  But this is no bandwagon to jump on, there is no catchy slogan, this is just life.  And we all need to think outside the box to get things accomplished sometimes.

This has been shown to me over and over.  Just because something has worked for one person, does not mean that it will work for Lydia.  Just because this formula has been proven over and over does not mean this will work for the next person.  Because you had good results with many kids, does not mean that your 100th child will experience the same great result.  We are all different.

My eyes were first opened to this when we were in the hospital.  I thought medicine was a science.  I thought there was a medicine for this particular ailment, a formula to get the correct amount, and you give it and poof your condition is better.  I also thought things had good fixes for them and they could make just about anything better.  After all, you are always hearing about the new advances.  I quickly learned that this is so far from the truth.  And it makes sense if you think about it.  We are all different.  Each body is going to react to it differently.  The results are for the majority of the group.  So what happens when you don't fit in to that majority?  Well, you experiment until something works.  You think outside of the box and look at all the unlikely possibilities.  As frustrating as this was, it taught me a lot!  I am sure you can imagine.

We experienced this over and over with Lydia.  One night after her connection surgery she was very sick.  Her heart rate was over 200 and she would not settle down.  She had a blood transfusion, medicine upon medicine and nothing was working.  They had the talk with us that they were unsure if there was anything further they could do.  They had called in the surgeon to attempt intubating her.  However, because of the surgery that she just had this was an extremely risky procedure.  I had to call my husband home from work because we did not know if she would make it through the night.  I remember sitting there with the doctor and just running through every possibility.  She looked at me and said let's try everything we can so we don't have to try to reintubate.  At a last ditch effort we laid her flat.  She is not ever suppose to be flat because of her new anatomy.  Instantly her heart rate came down and she was sleeping, soundly.  It was a miracle.  But thinking out of the box, trying something that did not make sense worked.  We did not give up, we kept going!  I am glad the doctor was there because they would have never believed me otherwise.

This past week we experienced the same thing.  When getting her braces fitted we were told that she would take off walking and in a day or two things would be good.  Not our experience at all.  She started locking her legs and turning her toes inward.  After asking questions and going with our gut, we found that she was fighting the braces.  We then discovered because we had to go up two sizes in shoes, it was too much weight for her small little legs.  We got a new kind of shoes and she is doing awesome.  Thinking outside of the box and realizing there is no magic formula, there is no cookie cutter.  We must experiment and try everything to find something to work for her.

I can think of example upon example of this.  But it has given me a new way of thinking.  It has shown me to not judge, to keep on going, to never give up.  She has shown me a new way of looking at things.  When someone says that it can't be done, there is a way that it can, you just have not looked hard enough.  What a great life lesson to learn.  None of my kids are cut from the same mold, even though they have the same parents.  Everything works a little differently for each person.  Never give up, think outside of the box until you find a solution.  Thanks Lydia for once again teaching you mommy a very important life lesson.