World Down Syndrome Day...Who I Am

I have to say I was ready to sit down and write all about Lydia and who she is today.  I still am going to, but I need to share something that really made me sad today.  Today there are millions who are celebrating World Down Syndrome Day to create awareness and share with the world about our special blessings.  It is important to create awareness and stand strong as a community.  As part of the PathMakers Support group that I work with, we decided to do a project for Trisomy Awareness month.  We have several kiddos who have T21 and one that has T18.  The idea was to feature these kiddos in the local newspaper on March 18 and March 21.  After submitting several articles, and making several phone calls, I never received a returned call or e-mail about our story.  March 18 came and went and Leila was not featured nor mentioned.  March 21 is here and there is no child featured in the paper who happens to have T21.  There are several good stories in there, however, there are none that talk about Trisomy Awareness.  Our project was not so successful.  To say I am mad, is a little bit of a understatement.  However, if Lydia has taught me anything it is to keep fighting.  To not let that HUGE door that has been slammed in your face discourage you.  She has taught me to keep smiling and ALWAYS take the high road.  I decided to use social medial to gain support for our kiddos and circulate our story.  There is still a lot of ground that needs to be made to create more awareness about Trisomy.  I guess when you think of it, it really could not have happened on a more perfect day.  My newsfeed on Facebook is lit up with posts about Down syndrome, and really all month it has been lit up with Trisomy awareness information.  Thanks Lydia for teaching your mom once again.  You have changed me for the better!

I can't think of anything that describes Lydia better than a picture, well I guess unless you get to meet her!  So, today I am thankful for the many lessons that she teaches me and especially the one she taught me today.  I hope you enjoy these pictures and her smiles.  Thank you for your continued support and prayers.  God knew the void that I needed filled in my heart and gave me Lydia.  She loves without fears and she is just one extra amazing girl!  I am so blessed!

Lydia sitting in her Bumbo helping mom cook!

Pictures in the summertime on the grass

Nothing gets her down...not even in the hospital

 My first picture with my girl, 18 hours after she was born!

Lydia after her very first surgery to place a G Tube, day 2 of life.

Lydia hanging in the hospital growing, waiting for her first major surgery.

Lydia eating, drinking from her cup.

Love how this girl sleeps!

 Sitting for her very first time.

 Waiting patiently to eat.

 Flashes of Hope from the hospital

 Lydia after her Gastric Transposition surgery

 Lydia and her sisters

 Turning 1 is tough work

 Showing her true colors while getting her pictures taken

Three happy sisters!

 

 

If you have not had a chance to watch the video I posted the other day, I encourage you to do so!

http://www.youtube.com/watch?v=9VG7dh5W40I&feature=player_embedded

 

Also, there was a great article this morning from the Today show...wanted to post that also!

 

http://todayhealth.today.com/_news/2013/03/21/17387186-savannah-guthrie-what-world-down-syndrome-day-means-to-me?lite

Fears

We all have fears.  Sometimes they consume us, sometimes they are good for us.  But I do believe that all fears hold us back from something, and I would argue, most often times the best blessings.  While fears are natural, one thing I have learned is to break through them and see what is on the other side.  I have had many fears on this journey of life.  From my marriage to being a mom to raising a child who has significant medical needs, a child with special needs, a Christian family in a world that is cold and has very different views than the Bible, to being a stay at home mom.  I have encountered many fears in my life and I know I will continue to encounter them.

I will never forget the fear when we heard that we were in the high risk category for a child who may have Down syndrome, the fear that enveloped me when we heard our sweet baby had a heart defect and they could not detect a stomach.  The fear of sending your child off to surgery multiple times, the fear in my heart when a lady approached me and said I needed to abort my baby because nothing good comes from a mom who is that large.  Or the fear and anger when a doctor said I could wash my hands of my child and institutionalize her (that stings just writing it).  These are all real fears, these are all things that I have encountered so far.  I am sure as we continue this journey, there are going to be many more things, things that may sting even more.

However, if I was just consumed with these fears, I would miss the biggest blessings that God had planned for me.  I would have been too scared to open my eyes and realize the rainbow on the other side of the fear.  By trusting God, allowing Him to walk me through these fears, trusting that He has already conquered these fears, I have been opened to so much more.  I have grown, I have faith that can move mountains, I have a daughter who is the light of my world, my other daughters are better because of Lydia, and I have strong marriage.  The lessons that we have learned are numerous and oh so priceless.  And I know that I am not done yet...that is the exciting part for me!

When I think about what makes Lydia so different from my other kids I think it is because she has no fears.  There is nothing that holds her back.  She is ready to explore at any moment, no matter what has been given to her she is ready to tackle it and she has a smile on her face.  No matter what the mood is around her she is happy and waiting to make some one's day.  To live your life with a child like faith and not let fear over take you, is what she has taught me.  At the end of the day there is nothing else that matters.  She loves without fear and that is something that is simply amazing.  There are no strings attached, she is who she is. She does not mask that or cover it up.  She is simply amazing!  And because of that she challenges me every day to be a better person.

I remember when I was pregnant with Lydia we spent some time in St. Louis while my husband was working there.  I remember visiting a museum and crawling around with the children.  I remember getting stuck and just laughing for hours.  I did not care, I was having fun.  All of the worries of the world were so small, I was having fun with my children.  I did not let my fears of what others would think cloud my judgement.  It is still a moment that my other girls talk about to this day.  On that same trip, I rode up to the top of the Arch.  I am extremely claustrophobic.  Especially when I am pregnant and not to mention how incredibly large I was.  But I did it, I showed my girls I could face my fears.  My husband was standing there holding my hand and cheering for me.  I remember feeling totally on top of the world.  To be able to get pictures with my girls at the top of the Arch was a big thing for me.  I remember what it was like to face my fears, big or small there is such a blessing in it.

I do think that we as a society have clouded Down syndrome with many things that it is not.  We have a perception that is totally false.  When I hear parents talk about their child with Down syndrome, there is nothing but positive things.  However, I hear things from the world like that couple is safe from have a child with Down syndrome, I am glad that it's their burden and not mine, I could never do what that family does, I am glad that my children are healthy...and the list goes on.  Many of those comments have been said to us too, however, I just feel bad because it is fears that have prevented these folks from the blessing of a child like Lydia.  It is their fears that have prevented them from growing and seeing what God has in store for them!

I really am not sure if I am making sense, but in my mind it does. There was a HUGE fear learning about Lydia.  Mostly because of her medical issues and the Down syndrome just happened to be part of her.  I am so glad it happened that way.  We did not focus on the fact she had Down syndrome, we focused on her getting better.  And she is who she is because she is Lydia.  But the fears that were in my mind were huge.  However, God had great plans.  In making me face my fears I have found love and joy.  I have a very strong family.  I have girls who have learned about sacrifice, loving, caring, not judging others for what they look like (or what line or tube they may have in place!), things they would not have learned had it not been the fact we had to face our fears.  I am so excited to see where they will go in life because they have learned this so young.  I have a deep appreciation for who Lydia is and what she has brought to our family just by being her. 

I think about how our fears can direct our lives.  I think about how these fears can make us miss out on things.  I would encourage you to face your fears and discover the blessings you are missing because of your fears.  Are you scared because someone looks different than you, because they act different?  Are you scared because you feel that person may be a burden when in fact they were given to you to learn and grow?  Are you scared because you can't control the situation?  Are you scared because you are walking a path of unknowns, or one you thought you never would?

God knows our every need, even ones we don't know yet.  God knows exactly what we need.  When we trust Him completely, life is beautiful.  It is not going to be easy and we will have very difficult times, but He will be standing next to us helping us.  He will grow us into the people He has created us to be...each one of us.  Lydia may look a little different, may be a little slower at picking up things, but she is no less than me or you.  She was fearfully and wonderfully made.  She has feelings and emotions just like you and me.  She is capable of many things so don't hinder her potential because of your own fears.

I can go on and on about what she is and how she has taught our family and how blessed I am.  But as I sit and think about it, I really want to encourage everyone to face their fears.  Lack of knowledge about what Down syndrome is, fears of not really knowing, false stereotypes are things that need to be faced and overcome.  Lydia is important, she is no less than you or me.  Be prepared world, she has great things planned for her.  If you are too scared to discover the blessings of someone different she is going to walk right over you...nothing is stopping her!  She is who she is and that is amazing!  No one will tell her differently.

Why It's Important

We are just three short days away from National World Down Syndrome Day.  I am challenging myself to write three posts that are related to creating awareness about Down syndrome.  This is something that I have felt passionate about since I found out that our baby has Down syndrome.  As I was praying about what to write, the question of why do I care about creating awareness about Down syndrome popped in my head.  After thinking about it for awhile, I really don't have a good reason, it just is important to me.

I really don't care if any of my children are "accepted" by world standards, but I do care if they are following Jesus, if they have accepted Him as their Lord and Savior.  I really don't care if the world makes "fun" of my children or calls them names as long as they know that their parents love them and will always be by their side, and they are accountable to God.  May sound harsh, but when it all gets boiled down, it just does not matter, faith is really what this family is built on and is what holds us together!

I don't care if the world does not accept Lydia as she was created; her family does and that is all that matters.  God created her for a very specific purpose and we love that.  We accept her for who she is, just as she accepts us for who we are.  Who could want any more than that?  She has made us better because of who she is.  She has opened our eyes to a whole different world, one that is better!

I think I care so much about creating awareness because I want the whole world to learn what I have learned from her; from walking on this journey.  While I realize that not all of us are meant to learn every single lesson in life, I feel that it is important to know what Down syndrome is by a mother, a family rather than social media, a medical professional, a book, a diagnosis...from folks who are uneducated or have not interacted with someone who has Down syndrome.  I think it is funny that we would not ask a question to learn more about a TV to a car salesmen, why do we hold tight to the information the media give us.  It is not always accurate.  We judge and make stereotypes before we even get the real facts.  That is unfair, and I want to do something to change that!

I once was someone who did not know a person with Down syndrome.  I once was someone who believed the stereotypes.  I once was someone who was totally uneducated about Down syndrome.  Often times we all are uneducated about something until it affects us.  However, my eyes have been opened, my heart has been changed; God knew there was an empty spot and filled it with Lydia.  Those things that I thought that I knew about Down syndrome, have been changed, they were wrong, I have been opened to an entirely new way of thinking.  Any fear that I had is now replaced with love.  Complete love, love like I had never known before.  It is a choice, there are days that are so hard, but the love she gives is indescribable.  What she has taught me, yes a 19 month old, is immeasurable.

While I can never be able to put into words our journey, what I have learned, what Lydia means to me and our family, I try very hard by sharing our journey.  Until you have walked in the shoes, I understand that it is hard to really know.  However, I think just by meeting Lydia you would agree she is special.  She may be special because she carries 47 chromosomes, or she may be special because she has a big smile.  She may be special because she will tug at your heart strings because she is so cute (Ok I am a little bias!) or she may be special because she will look you right in the eye and tell you she loves you.  She wears her personality on her outside for everyone to see, and it is something that most people take notice.

I am not asking for money or research to cure her.  She is incurable.  She does not need to be cured from anything.  She needs to be accepted.  Sometimes our media clouds everything with cancer research or this research or that.  However, sometimes just accepting who someone is for what they were created is the very first step.  Please hear me, I am not putting these efforts down, but what I am asking for is acceptance of people who are a little different, may look a little different than the "norm", may take a little longer to get something that is second nature to you and me, and breaking through the old stereotypes that just do not describe someone like Lydia.

I think I mentioned this before, but I saw a post on Facebook from a nurse about the devastating defects of Down syndrome.  Almost everything it mentioned was a physical defect and not a really devastating defect.  Lydia does have some devastating defects.  It was scary when she went in to get her heart fixed...that is a major surgery.  There may be possible complications that she will have to deal with for the rest of her life.  However, it is fixable which is great.  It was heart aching learning about her Esophageal Atresia.  The "fixes" were not good...all of them came with a laundry list of possibilities.  Her surgery was devastating.  However, she is proving every day that she has what it takes to overcome that and prove everyone wrong.  But her chubby hands, her low lying ears, her creases in her hands, the space between her toes, her slanted eyes, her short nose, her larger tongue, her crooked teeth...I think they are cute, they make her who she is and they are not devastating at all.  We joke because I find some of those "devastating defects" in myself, my husband, my other children, and she does not have many of them.  Those are physical traits, that they may or may not have, and they are not devastating at all.

Acceptance and knowledge of others is so powerful.  She has Down syndrome, but Down syndrome does not have her.  She is classified by many things that Down syndrome has, but she does not fit all of them.  Just as my other children have different characteristics about them, it does not define them.  Why should we then classify Lydia differently because she has Down syndrome.  That means nothing more than she has an extra Chromosome, she is extra sweet, she is extra special, she is extra determined.

I think you would be surprised that she is more alike with her sisters than she is different.  She gets into things and she reaches her developmental milestones.  She may be a little slower than some, but she gets them.  She does everything with a smile and there is always pure joy in her face and in her heart.  It is enough just to melt you and inspire you to be a better person.

When I think about the 3 Chromosomes, I think about how important the number three has been to me and my husband.  We dated for three years before we were married, when we chose the date of our wedding we had 11/1/03 (three ones to compliment the 03), we believe that a marriage takes three, we did not have kids until we were married for three years, we have three children.  OK...maybe I am going overboard, but she was meant for us.  The 3 Chromosomes are special, they are wonderful.

I challenge you to share this blog or another blog about Down syndrome.  I challenge you to continue learning about Down syndrome.  I challenge you, if you don't already know someone with Down syndrome, get to know someone, they will change your life (be prepared).  I challenge you to share with others about Down syndrome.  And on Thursday March 21, 2013 wear blue and yellow proudly and tell others why.  Or if you participated in a walk with us, wear your shirt and share about Down syndrome.

One of the organizations that I like on Facebook is IDSC.  They have been a great support for me as we continue to walk this journey.  They recently put out a video about creating awareness for Down syndrome.  I think that it is awesome.  Please take a couple minutes and watch this video and share as you feel led to! 
http://www.youtube.com/watch?v=9VG7dh5W40I&feature=player_embedded

Sometimes it is so hard to write specifically on Down syndrome.  I just feel like I get tongue tied and can't quite communicate as I would like.  I hope this makes sense.  I feel passionately about creating awareness because it is my daughter.  I once was uneducated and now I feel so blessed to be Lydia's mom.  It is something that I can't explain, but if you know her, you probably understand too.  She is who she is and I am so proud of that!  Aren't we all!

Trisomy Awareness Month

Trisomy 21 is what Lydia has.  It means that she has an extra 21st chromosome.  It means that there is the possibility of some distinct physical differences for her. It means that she will most likely be delayed in some physical development, but at some point she will be able to achieve those milestones.  It means that there may be some medical issues associated with her chromosome defect.  It means that she has something extra than most people.  It may mean a lot of things to group her into some different categories, stereotypes, high-risk groups.  However, it does not define her, it does not describe her, it does not limit her. 

I have prayed for awhile as to what I wanted to share about to help create some awareness about Trisomy awareness month.  I feel like I need to change people's minds, shake them until they understand what this all really means.  I want to wipe away those bad stereotypes.  However, I realize that I cannot do that.  I am very passionate about creating awareness and breaking down old stereotypes.  I believe the best way that I can do that is to share our story, as I have done.

What a blessing God has given me, not only in Lydia, but in one amazing testimony.  God will bring the people He wants to read all about Lydia.  God will work in the hearts of those that He wants this testimony to touch.  God is really what it is all about.  And in figuring this out, my walk with Him has been much stronger, much closer. 

I can say all kinds of great things about Lydia, she is my daughter.  I would say that about any of my girls.  They are awesome!  However, I can say that there is definitely something different about Lydia.  Most of it is probably because she has Trisomy 21 (AKA Down Syndrome!).  But that difference isn't from the things that you have probably heard.  That difference is in who she is, who she challenges me to be, who she challenges her sisters and her dad to be.  It is in how she affects everyone she meets.  It is this twinkle in her eye, her HUGE (cheesy) smile, her pure love and joy, her constant happiness.  It is in her ability to teach others more about themselves and she does not even know she is doing that!

I can go on and on about what this journey has taught me and how much I have grown.  I do believe, however, that God know exactly what we need.  I do know that Lydia is not a mistake by any means.  The plans that God has for her life are incredible, just like each one of us.  We all come in different shapes and sizes.  We try to categorize, we try to make one thing better than the other.  We were never intended to be categorized.  We were all made with a specific purpose and plan.  We all fit together. 

The best image is the body of Christ.  Christ knit each one of us together fearfully and wonderfully in our mother's womb.  We had a purpose and plan.  We are all members of the body of believers and together we work.  Apart we struggle.  So Lydia has a plan just like you and I do.  It does not matter what part she is, she is important.  When one of our parts of our body hurts, it effects the entire body.  When one part of the body is in pain, the rest of the body struggles, it feels that pain, it is harder to operate.

I guess what I am saying, is if we all embraced this, we would no longer have to categorize and we could all work together much better, just as Christ had designed.  However, sin is in the way.  We allow ourselves to walk down a sinful path.  We all do, as we are all sinners.  But we must chose the path God wants us to walk.  We must try to turn away from our sin and embrace His truth.

As our family continues down this path, I will continue to tell others about Down syndrome and create awareness.  I will continue to tell our story.  I will continue to try to use our testimony for God's glory.  I will try to create awareness as best as I can by sharing with others who Lydia is.  By allowing her to be herself and show the world that she is not defined by an extra Chromosome, but she is made extra special because of it.

I think it is hard for me to write and clearly explain what this means to me.  This is my child, I have prayed for her, I love her, and because of her I am such a better person.  It is hard to put into words who she is so others will understand.  And just as we are all judged in some way, she will be no different.  I do not feel like I need to defend her life, but I do feel like breaking down some old stereotypes will help.

One thing that I read this weekend really got me fired up and thinking.  It was shared on a nurses Facebook group page.  It was talking about the devastating defects of Down syndrome.  The "defects" that they were mainly referring to were just physical differences.  This makes me upset.  We all have some kind of physical abnormality.  God made all of us different, not one of us are the same.  However, why are her abnormalities devastating?  What makes having chubby hands, creases in our palms, slanted eyes so devastating?  I think educating is a really big issue. 

I do, however, understand first hand that there are devastating defects that come along with Down syndrome.  But many folks who have Down syndrome do not have these either.  Lydia was "extra" special in that she did get some of these devastating defects.  However, with the significant gains in the medical field, she is able to live a healthy and "normal" life.  Normal by definition is her normal life, not yours!  Just like it is my normal life and not my husbands!  But I would say now that she has been able to overcome the surgeries and things, she can look back and she what a strong person she is, what she has accomplished.

It is my prayer that more people educate themselves on Down syndrome.  That we would all embrace differences and that we are not quick to classify into a stereotype.  Lydia is more alike to me and you than she is different, the world just chooses to focus on her differences.

Happy Trisomy Awareness Month.  Thursday March 21, 2013 is National Down Syndrome Day.  I pray that we all reach out and educate, share your story!

What did I do to deserve this?

I can't believe where the time has gone. She is 19 months already! She is our little miracle, our diva, our precious little one. How awesome is that! I could not have imagined where this journey would have turned out 19 months ago, and I won't even begin to imagine where it will be in another 19 months. God has incredible plans for each of our lives and Lydia's is no different.

Just this weekend I was in deep thought and prayer about my little Lydibug. I was just giving thanks as to where she is. Each day she is doing something new, learning a new skill and making us laugh at such silly things she does. She has a deep love for her sisters and it makes me just want to melt. She is constantly bringing people together and making everyone around her smile. She is a blessing that I needed, her sisters needed, her dad needed; that the world needed.

I can see my fears now from the first moments that we knew "something was not right." Fears that I never really wanted to face, but were there. Those fears of how do I love someone that is not like me? How do I take care of someone I know nothing about their needs? How do I protect my baby from the harsh reality of the world, even from myself? I think my silent fears were more of me getting over those rotten stereotypes than a real fear. When we do not know something we get scared, we listen to the wrong things.

However, I loved this girl and I did not even know it. I loved her and God knew that I needed her. She has taught me so much in her 19 months. She has taught everyone around her. The funny thing is, she has no clue because she is just being who she was created to be. That is the amazing part of it all.

And I can say in the days that come, things are getting easier. The decisions come easier, the advocating comes easier. I guess you learn that this is just part of what you were called to do. Your bond with your child grows stronger and stronger and some where along the way to gain confidence that you never knew you had. You are able to do things you never thought were possible. You realize that you are not alone, God is right there holding your hand, walking through every valley and mountain top.

There are times when I allow the "stuff" to consume me. However, there are more and more moments when I sit and watch her, and I am totally amazed. I think I get more amazed because at some point I bought into those stereotypes, I thought she couldn't do it. Even if I never said out loud, I am sure I thought it. I thought somewhere she may never do that. Or just that fear that consumed me overtook and I was not sure what it was she could do.

However, she is no different than my other children. I didn't know who they were, but I never had anyone tell me who they thought she would be. I did not know the struggles she would have, but I never had someone tell me the probable struggles she would have. I did not know how to take care of them, but I never had someone tell me that I couldn't take care of her. There is a difference. With the other girls, they were accepted at first thought, but Lydia, it has been a struggle really from the start in someone eyes. Once you get pass that, it is easier to push forward, accept, and live your life.

I can continue to reflect and go on and on. But in the living room the other night, I just was crying at how blessed I am. The question of how did I deserve this just kept coming to my mind. There sat a girl playing on the floor showing me pure joy. She kept turning herself in circles and laughing. She would look at me to verify that I was laughing and keep going. She was so proud of herself for what she was doing. She was having so much fun. I appreciate those moments, those intimate moments that God gives me to understand the blessing all my children are, these moments that we say pass too soon, but yet don't do anything to embrace them. These gifts that are on loan to us to take care of and one day return. I have been blessed because my Father knows what I need, because He is in control of my life and is providing for me everything I need.

Overall, things have been good. She is amazing. She is now climbing the stairs, she is now into everything. She is learning all kinds of new stuff. She is constantly learning and watching us to imitate us. It is way cool. She adores her sisters. Loves them! And they love her too.

Friday I was a bit frustrated as we are still having issues with this new medicine. It is causing her to throw up and not really want to eat. However, the pain has gone away. So there is good and bad. We are sorting through everything. The GI doctor wanted to admit her this past weekend to observe. Eric and I thought that was not the best idea because of her not being covered by the RSV shot. We did not want to expose her to things if we do not have a particular reason to.

Eric and I discussed more about taking her tube out and the game plan for her. Decisions are hard. Especially when you are relying on someone else to provide you the information. Eric and I have held pretty firmly that the tube needs to come out. We believe that she will do better once it is out. It is not that she cannot gain weight, it is that she has a hard time keeping it up when she is in pain. So we need to do what we can to get rid of that pain.

Making a decision based on what could potentially happen is not a way to make a decision. While we understand the capacity of this decision, we need to make sure we are doing what is best for her now. At any point there is going to be that possibility that she may stop eating and will need something to assist her down the road. However, we need to see what is happening now and going to benefit her today.

So we will watch her weight for the next two months. I will be contacting the surgeon to get surgery scheduled the end of April or the beginning of May. Getting it out is what she needs. We are at peace with that decision. And what happens down the road, we will have to deal with that then. She is not tolerating feeds through it, and we feel we are holding on to a security blanket for no reason. It may not be the cause of the problem, but it certainly is a symptom.

It is so great when God can come in and help you make decisions and you can feel at peace with them. No matter how big or small, praying and asking for guidance is important.

Today I will chose to not be consumed in the why but enjoy what I am given. I could ask why she has to be in so much pain, why me, why does she have to be different, why does it always have to be a battle? Or I could enjoy this moment that I am given, accepting that this is how God chose to make her and because of that she is perfect. She is a miracle and she is mine! To simply enjoy this blessing and learning and having fun.

I am enjoying her so much, learning, playing, laughing, having fun. I would not change anything because I would not be me and she would not be her! Praise God!

It's a medical thing

At 20 weeks we found out that our baby had some markers for Down Syndrome.  However, our OB said that it was really nothing to worry about because even though I was in the high category, there was still a good CHANCE that I would have a perfectly healthy baby.  My husband and I prayed and we got over the initial shock of have a different child.  We had to face what we had thought would be different.  After a day or so, we were filled with joy.  We could not wait to meet this special blessing, no matter what they looked like or were labeled with.  We were just excited to have another child.

It was not until I was about 33 weeks along that we discovered there were some medical issues.  They were able to tell us that she had a hole in her heart and the other complication they would not be able to full diagnosis until she arrived.  We just prayed and knew that it would be OK.  We held out hope and we were very positive about everything.

However, the medical side of things really did not hit me until we were in the midst of them.  I never realized that the medical field was so "experimental."  With my other children they had this or that and they were put on an antibiotic.  Even when Ellen had her hand surgery, we were told the most devastating news first, and then when we pressed on, it really was nothing at all.  It seemed so simple.  There was a test or a surgery or a procedure or a drug to help all of these things.

But what happens when you child has something that they are not familiar with, or there are no good answers for what your child has?  What do you do?  I thought the medical field was a science and had an answer to things.  I realize that there are not cures for everything, but I thought that there were a lot more answers than what they do have.  I thought that we would have surgery and things would be done.

I was very mistaken.  That is not how the field of medicine works.  So I went into this clueless, not even thinking that my child could have medical complications.  Then I thought that the medical field was a little more black and white.  Oh, that has proven to add to this wild ride.  I was terrible mistaken.  It seems as though every decision is experimental and every doctor has a different opinion.  The medical books are written for some kid who I don't think exists, because my child never once followed anything the books said.

It can leave a family, a parent, a sister, a brother, a grandma, a grandpa, an aunt, an uncle very frustrated.  There seems to always be more questions than answers.  There never seems to be a cut and dry answer.  It is a difficult road to travel.  You are constantly trying things, things are not working.  This is how you do the two steps forward three steps back dance.

I wish someone would have mentioned this to me ahead of time or I would have realized more.  It is frustrating.  It is a frustrating life to live.  Sometimes too, there is NEVER an answer for your child.  You must constantly live in the ups and downs.  You must never really get a good answer for your child's condition.  And sometimes you must face that there is nothing that they can do.  You must face the reality that your child may have been chosen not to make it in life.  Not to enjoy their first or second Birthday, never to come out of the hospital.

Those are harsh realities, but ones that a family who has a child who has a medical condition must endure.  As hard as those are, there are so many blessings along the way.  They are blessings that we never could have imagined.  Blessings that we could have never dreamed of.  But they are HUGE blessings. 

While the road of a medical journey is long, hard, scary, frustrating and everything else, there are many wonderful things along the way.  When you are able to get to a place to be thankful and realize this, it makes traveling the journey all that much better.  We have made some awesome friendships, ones that we would have NEVER made had it not been for this journey.  We have had some amazing opportunities, again ones that we would have NEVER had had it not been on this journey.  We have also found strength like we have NEVER seen before.  And I can't tell you what this journey has done for our FAITH.  It is amazing.

While I would take the pain away from my daughter in a heartbeat, I would never change one thing about her.  Every moment, experience, set back, trial, hurdle, mountain top has made her her.  She has been shaped and formed and molded by every moment.  Praise God for that.

I hope I can write this to encourage others who are on this medical journey.  It is not for many people, only a select few can experience and understand the true hurts and the true joys.  However, it is one that many people can learn from.  And just because your child was born healthy never ensures you will not be on this path at some point.  God holds are future and we do not know what the next moment will bring.

While at times on the journey it sucks and it is hard, keep going.  Around the next corner there is something totally unthinkable.  Take each moment for what it is and just enjoy it.  I pray for all of the families that continue to fight and battle this tough journey.  They bring so much joy and inspiration to me.  These kids are simply amazing.  I encourage you, if you don't have a child who is affected by a medical journey, get to know one.  They will change you forever.

The greatest lesson that I have learned, is years of medical school does not make someone know my child better than me.  I don't have the medical knowledge, but I have the bond with my child.  No one can take that away nor can they effectively treat my daughter without that knowledge.  It must be a partnership.  And when you are not feeling right about something, keep pursuing it.  Don't give up.

Struggles

I have to say that I felt pretty beat up after our appointment yesterday.  I feel like we have no plan to manage our daughter's pain.  I feel like we are no closer to making her comfortable than we were before.  I also feel like our one hope (having surgery to remove the tube) had been taken away.  We were unsure if this was the cause, but it seemed reasonable and at least it was something.  Instead we were given a "miracle" medicine to give her and hope that this will work.  All the medicine has done is make her very sleepy (how are you suppose to eat, much less gain weight when you are sleeping all of the time) and not want to eat.  Yes, I need to give it more than 24 hours but to say that I am frustrated, is a bit of a understatement.

I feel beat up and worn.  I feel like there are probably not many other people who can relate to this feeling.  I look at their children and they are not battling what we are, they don't understand, how could they.  I feel like this just will not stop.  When can we just have a day to enjoy this sweet girl and relish in what God has given us?  When will the constant problems stop?  When will I have to stop fighting for my girl?  Struggles.  Struggles that never seem to end.  Struggles that seem impossible.  Struggles that are bigger than me.

So what do you do when your struggles feel more than you can handle?  I have been praying, but I still don't feel like there is anyone there.  I know that this journey of faith is difficult and I know that I am NEVER alone.  But some days just feel so awful.  I feel like I have been so beaten up.  I feel like I have been so battered.  When will it stop? 

As I have been praying and asking God to show me, that thing that I needed all along was right in front of me.  It actually is at the heart of the struggle.  Her name is Lydia.  I was sitting on the floor last night just feeling so low, wondering why this was all happening.  Not really feeling like any of the pieces of the puzzle were connecting.  I picked her up and she smiled back at me.  My heart instantly melted.  Sometimes God gives us the most strength in the most unexpected place.

During all of these struggles I saw through that smile that these are her struggles.  These are real things that are affecting her, shaping her, creating her.  And in doing so she is teaching others, she is affecting others, she is a testimony.  I realized that she is battling these struggles with grace and courage.  She has been fighting and smiling through every struggle.  This is creating the person that she will be.

I am not sure if I can really put into words that moment, the smile, the answered prayer, the renewal of strength, the "light-bulb" moment, the duh moment.  I realized that in a lot of this struggle the I has been before the she.  I do put her best interests in mind.  However, when the struggle seems to big, am I putting myself in her shoes?  It is a struggle to get her to eat sometimes, but what is happening with her?  Does it hurt?  What is happening?  To watch her cry out in pain is so hard.  To not be able to comfort her is so hard, but what is going on with her?  She obviously is hurting. 

It has helped me to think of her, to really think of her.  As I am fighting for what I think is best for her, I am trying to take myself out of it and really think about her.  I am trying to think about how she handles these struggles.  She is awesome.  She smiles and she makes others smile.  She betters those around her.  She has a way of bringing everyone together.

Maybe it was a little lesson in gratitude.  To be thankful for the situation, not to find thanks in the situation.  To be able to praise God and have a TRUE thankful heart in the midst of a storm.  Maybe it is growing in love even more, to be able to purely think of someone else and not just me.  I loved that moment, it was amazing.

To say that this journey has been a struggle may be an understatement.  However, to say that I have not learned, I have not become better is also an understatement.  I can't tell you how blessed I feel to be able to take care of her, to be able to learn from her, and to be able to love her.  Most days I want to literally bite her in love (seems so crazy but my love runs so deep).  My love for her is so great.  When she looks me in the eye, I can't help but just stand in amazement.  She continues to fight and learn, she is determined.  Despite all of her pain that she is going through she is still developing and wowing other people.  She is not letting any of that small stuff (and the large stuff for that matter) get in her way.  She continues to be her no matter what the situation is.  I have a lot of learning left to do! 

I can't explain how wonderful these struggles are when I look her in the eye and see this journey.  As much as I want to say it sucks and it hurts and I am exhausted (all things that I am) when I see that cause, when God has revealed that blessing in disguise, it is all worth it.  We never really know what we have until we take ourselves out of the equation, we find a pure heart of love and gratitude.  While there are things in this life that I would love (no stress of money, a child who would not have to suffer from the pain, this that and the other things) this is what God has blessed me with.  God knows what I need better than what I know I need for myself.  That is so awesome.  I need to learn to be content in this situation, in this moment.

None of us are promised our next breath, so are we going to honor God and appreciate where we are?  Lydia is teaching me that.  So as much as I want to complain, I need to give thanks and rejoice.  As hard as the last couple of weeks have been, as tired as I am, I am here, I have a loving God, an amazing family, health, and the promise of eternity.  All of the rest of the stuff is trivial.  It really does not matter. 

I hope this makes sense.  It is hard for me to put into words these moments that God gives me.  However, they are so important and I want to make sure I try to capture them for future reference. 

My struggles, the are God's, He has been there, He is with me, and He won't leave me.  What do I have to worry about?