This blog was inspired by 31 for 21 & is about my wonderful family.

"As a mother, my job is to take care of what is possible & trust God with the impossible." ~Ruth Bell Graham

"Never look down on someone, unless you're helping them up!"

Tuesday, October 30, 2012

Day 30

     With just one day left of Down Syndrome Awareness Month, I am reflecting a little.  I think back to the day those words were said to me, "Your baby has a 1-2% of having Down syndrome."  I went home to research Down syndrome on the internet.  As I read each & every statistic on each website available to me, I felt so empty...so scared.

     As I read these statistics, I am overwhelmed!

Characteristics Percentage[21] Characteristics Percentage[21]
mental retardation 99.8% small teeth 60%
stunted growth 100% flattened nose 60%
atypical fingerprints 90% clinodactyly 52%
separation of the abdominal muscles 80% umbilical hernia 51%
flexible ligaments 80% short neck 50%
hypotonia 80% shortened hands 50%
brachycephaly 75% congenital heart disease 45%
smaller genitalia 75% single transverse palmar crease 45%
eyelid crease 75% Macroglossia (larger tongue) 43%
shortened extremities 70% epicanthal fold 42%
oval palate 69% Strabismus 40%
low-set and rounded ear 60% Brushfield spots (iris) 35%

     The first thing I see is mental retardation...99.8%.  That's nearly 100%!  Do you know that people make fun of people who are delayed?!  Tears fill my eyes at this statistic.  My baby will be mentally retarded.

     Congenital heart disease...45%?  That's nearly half!  How in the world can I watch my baby endure open heart surgery to correct this?  I am not this strong.

     Some people with Down syndrome can not speak, they use sign language to communicate.  Wait, my child may not speak?  Most children with Down syndrome walk around age 5.  FIVE?  Some children have to be tube fed.  Tube fed?  How in the world can I handle that? I could handle all of the physical features.  So what if he has short hands or almond shaped eyes or atypical fingerprints.  Does that really matter?  It's the life threatening things that hurt me.  The increased chance of leukemia, the heart defects...those things are what have me worried so much.

     I continued to learn all I could about Down syndrome.  After all, this is why I chose to have the CVS test, so that I could be prepared.  So that when my baby was born, I'd be over the grieving process & I'd be prepared for what was to come.

     We went in for an ultrasound to check for any abnormalities in my son.  I am a pro at reading CT scans, MRIs, & generally ultrasounds, but I've never read one of the heart.  So when the ultrasound tech was hovering over the heart, I couldn't tell a thing.  But I knew that if she was concentrating there, that he had a heart defect.  The doctor came in & informed us that our son had a common CHD (congenital heart defect) found in babies with Down syndrome, complete av canal defect.  He told us that he'd require surgery before 6 months of age, but that one surgery should repair the defect.  He referred me to a Pediatric Cardiologist.

     I researched my son's CHD.  It was a complex condition & I was worried, but left it at the feet of Jesus.  I knew He'd handle this, after all, He did allow my son to make it this far.

     At 39 1/2 weeks, my OB decided to induce my labor.  He said it was the best thing for my son.  I was so excited.  So ready to meet my little miracle son!

     On January 13, 2009, at 2:16 p.m., my son was born!  He cried immediately, which was music to my ears (we were told that since the ultrasound equipment can't detect everything in utero, that he may not cry & need surgery immediately)!  They weighed & measured him, cleaned him up, & the NICU team assessed him.  They let me hold him briefly.  He was so beautiful.  Down syndrome?  Heart defect?  Mental retardation?  Who cares?!  He's perfect to me & my family! 

     My husband proudly held him & allowed our oldest son hold him before they took him to the NICU.  My son was so proud to have a little brother....his face was covered in tears of pure joy!  At that moment, I knew God gave this special little boy to us for a reason.  It wasn't to burden us or chastise us for some reason.  He was sent here to help us, to teach us.

     Little Troy had open heart surgery one day shy of turning 5 months.  He did so well!  He had a few complications, but it went well.

     Two months later, he began showing signs that something wasn't right. To make a long story short, he had infective endocarditis.  We were told that he would not survive.

     But God had other plans.  Troy's little heart healed itself!  He has tricuspid stenosis due to all of the scar tissue around that valve, but he's doing remarkably well.  He had to have an emergency tricuspid valvuloplasty at 23 months.  So far, he's doing very well.  He still takes Lasix daily & we have to closely watch for signs that his heart is failing again.  His cardiologist thinks he'll have to have that valve replaced, but we're waiting until he has to have it done (once he has the artificial valve, it has to be replaced every 2 years until he stops growing, then every 10 years).

     I've had people tell me that I'm remarkably strong.  And to that I simply say, "thank you.  I give all the glory to God."  I know that I'm strong.  With all that I've endured, you have to be. And who has been with me every step of the way?  God!  He has been there to pick me up when I couldn't stand.  To wipe my eyes when I couldn't see.  To be my voice when I couldn't speak.  To give me strength to carry on.  To hold my hand when I felt all alone.

     I've had people say to me that they don't know how I do it.  To that I reply, "It's simple, with God's guidance."  He brought me to it, He'll bring me through it.  I love my children.  I love all three of them equally & I will do anything I can to show them that.  When you truly love someone, ANYTHING is possible!

     Some people see that I am the mother of a teenage son, a toddler with special needs, & a baby girl & they don't know why I "started over."  Well, that wasn't my plan.  That was God's plan.  We tried to have another baby when oldest was 2.  After losing 6 babies, we gave up.  We had all of the tests to determine why our babies were dying.  We were told that I'd have to have invitro in order to conceive again, which was something we couldn't afford.  But, see, God had plan.

     God knew that Troy would change our lives.  He knew that Troy wouldn't be the burden that some people perceive him to be.  He knew that Troy would enrich our lives & teach us lessons only he could.  And I truly believe that our love for Troy, our faith in Him, & our spiritual growth impressed God so much that He blessed us with our daughter just 3 years later.

     I look at my son & I see perfection!  He has overcame so many obstacles in his lifetime.  But nothing has defeated his spirit & I hope nothing or NO ONE will.  He is determined, dedicated, loving, & smart.  He works very hard every day to cross over these bumps in his path, but he always gets over them!

     He walked at 26 1/2 months, despite having 3 heart surgeries before the age of 2.  He is a picky eater, but he's only been tube fed once (when his lungs collapsed after OHS #1).  He talks.  He doesn't say some words very clearly, so sometimes we have to keep asking him what he's saying, but we always get it.  He even speaks in sentences now.  And the big whammy that brought me to tears just years ago, mental retardation.  Yes, he's deemed by medical professionals as mentally retarded.  But, retarded DOES NOT mean stupid.  It means that he's slower to learn some things.  And I emphasize SOME things.  He's actually a brilliant little boy.  Let me give you an example.  Last night, I put my daughter to bed & came back in the living room to spend the 30 minutes left before bedtime with Troy.  He had found some mini license plates, one had my name (KELLI) printed on it & the other one had my husband's name (MACK) on it.  He handed me one & I said, "Troy, what does this say?"  I'm expecting him to point to the letters & tell me what they are.  But what he said floored me!  He looked at it & said "Mama!"  I showed him the other one & asked him the same question.  He looked at it & said "Daddy!"  My husband was in the kitchen washing dishes, so I asked him if he taught that to him while I was getting our daughter to sleep.  He said, "NO!  I didn't!"  I kept on holding up each one, asking him over & over & he kept saying "Mama" when I held up mine & "Daddy" when I held up his.  Now you tell me he's dumb.  He's never, ever been taught that...ever!  :)  I work with him every day.  He works very hard & it's paying off.  How I wish I would've known all of this when I was doing my research before he was born. 

     These are the things that people who receive a prenatal diagnosis or have a new baby with Down syndrome NEED to hear, not the 'possibilities" or the 'statistics' found on websites.  Parents do need to know what to expect, I do agree with that.  However, to be able to connect with someone who lives this life, the new life they will have, would help so many parents to truly understand that this diagnosis is NOT the end of the world.  This is not the end of their dream of a perfect child.  Their child is perfect, not only in their eyes, but in the eyes of God.  After all, isn't that all that matters?

This is my Troy.  I told you he was perfect!  So perfect that he won a Cute Kid Contest.  So perfect that he's going to be in an Atlanta magazine...he is one of four finalists that are competing to be on the cover of that magazine.  There is pure awesomeness stored in that extra chromosome!  Yes, he has Down syndrome, but Down syndrome doesn't have him!

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