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 2, 2012

Day 3

     Instead of a fact, today I’m blogging about how we learned that our son had Down syndrome.
     In June of 2008, I started craving foods, which wasn’t that odd for me.  See, in 2005 I was diagnosed with acute pancreatitis & in 2006 I was diagnosed with chronic pancreatitis.  For almost a year, I spent my life in the hospital, not being able to eat or drink.  I received my nutrition & hydration intravenously.  Yes, for the entire year.  So, as you can guess, after I was finally able to eat, I’d crave things every now & then.  But, I couldn’t eat very much & I was still very sick.  I had just had my central line removed in mid April of ’08 because I kept spiking fevers.  And I had just started to get some of my energy back…enough to where I didn’t spend 24/7 in the bed.  But when the cravings came, so did the vomiting.  And for me, that wasn’t new, either.  One Sunday night, I was craving a chili dog from Sonic.  So my stupendous husband took me there for supper.  When we got home, I became sick.  And, ironically, we were watching “I Didn’t Know I Was Pregnant” on tv.  It just clicked.  Maybe I’m pregnant.  I shared that with my husband & he jumped up & drove to Kroger to buy a pregnancy test.  He came in & told me to take it.  I told him that it didn’t work that way…I’d have to wait until the next morning.  He wasn’t convinced at all.  He was scared that the cyst on my pancreas was filling up again.  Well, the next morning, I took the test & it immediately showed up positive!  I was excited & scared.  I called my husband & told him.  He, of course, didn’t believe me.  I shared the news with my son just before I scrambled around to find an OB.  I called the doctor that I had used before, but they couldn’t see me for over a month….yes, that wasn’t happening.  So I called one that I knew was one of the best in town.  They could see me that day!  I got a quick shower & off to the doctor I went. 
     Let me catch you up on why we were stunned & why I had to go to the doctor immediately.  Well, after losing 6 babies between 1999 & 2004, I had numerous tests ran.  It turned out that I have a blood clotting disorder called anti-cardiolipin antibodies.  My body thinks the baby is a blood clot, so it attacks the baby.  There is no cure.  I just had to inject myself daily with an anticoagulant to keep that from happening…& I’m supposed to begin these injections at conception.  AND I was also told that my tubes were completely blocked, so the only way I could get pregnant was through IVF.  Now, back to the story.
     The doctor examined me, did blood work, & another urine pregnancy test.  Yep, I was pregnant.  He told me that I was approximately 8 weeks along & gave me a prescription for my injections.  He said that he wanted to make sure that the baby was developing okay since I was still on A LOT of medications for my pancreatitis & to manage my blood clotting disorder.  So he wanted to do an ultrasound & he referred me to a high risk pregnancy doctor, otherwise known as a Perinatalogist.  I looked at my watch & knew that my husband should be on his way home from work…the doctor’s office is on his way home, so I figured he’d want to see our baby.  My husband arrived & we were able to see our little baby & hear the heart beating.  We held hands & cried utter tears of joy.  After all of those miscarriages, heartaches, painful procedures…after my illness that I had suffered from for many years…all of that got us here.
     We went to see the Perinatalogist.  He advised me that I had two choices.  I could remain on my medications & the baby would be born addicted to them & the baby would go through withdrawals then, or I could go off the medications cold turkey now & the baby wouldn’t suffer a bit.  Well, that was an easy question to answer.  I didn’t want my baby to suffer one bit, so the weaning process began. 
     We went back to the Perinatalogist for an ultrasound.  He advised us that our baby’s neck appeared to be slightly thicker than it should be, which was a marker for Down syndrome.  Wait a minute, WHAT?  Did he just say that the baby I have longed for may have Down syndrome?  Wait, what is Down syndrome?  How can I care for a child with special needs when I can hardly take care of my own self right now?  And how in the world did my child ‘get’ this?  Was it all of the medications…the lack of vitamins & nutrition…or could it be caused by the blood clotting disorder?  Wait...what?  Why is this happening to me?  Haven't we been through enough?  Don't I deserve a perfect child?  All of these questions ran through my mind.  I was completely overwhelmed.  Then the doctor started asking if we wanted a special test that would tell us if the baby definitely had this chromosomal disorder.  The positive side was that we would know for sure the gender of the baby.  Now, keep in mind, he didn’t tell me that this increased the chance of miscarriage…well, if he did, I don’t recall that part, or I would’ve refused it!  This test was called a CVS test.  He would stick a biopsy needle (HUGE NEEDLE) into my stomach & through the guidance of ultrasound, he would snag a sample of my placenta.  Testing would occur on that sample to tell us for sure.  I agreed to the test, because I needed to be prepared.  Not to determine if we would keep the baby.  Guess I should’ve made him aware of that fact right then & there.
    An eternity passed…or so it seemed.  It was actually about a month.  I was so anxious about the results.  He finally called me with the results.  It was official.  My SON had Down syndrome.  He began giving me options & telling me time was running out for termination.  Wait a minute!  I am still processing that my baby is in fact a boy, & he’s talking abortion.  Um, excuse me, who said that we were killing this precious baby boy just because he had Down syndrome?  He began to tell me the ‘statistics.’  If you’ve been here, you know the drill.  50% have heart conditions…40% have stomach issues…they are mentally retarded, have cognitive delays, etc.  Yes, I hear you.  I just don’t care.  He’s not dying because God chose a different path for my family.  He may require a little more work, a little more attention, but we have that love to give.  No termination…deal with it.
     Now, don’t get me wrong.  I went through a period of mourning the ‘perfect’ child.  I did my share of grieving.  I searched the internet for weeks about Down syndrome & all of the information was so dismal.  I cried for about a week.  I know I cried constantly for 3 days.  At first, it was a pity party for me.  Why did I deserve this?  Why would God do this to me?  Then I began to think of how his life would be.  Typical children are bullied, teased, etc. every day.  Just how cruel would people be to him?  I cried at the very thought of it all.  Then my wonderful mother in law came over to help us out with laundry, house work, etc.  She looked at me & I lost it.  She assured me that everything would be fine, that God would provide.  She hugged me, cried with me, & talked to me.  I felt the fears fading away.  That night, I prayed, as I always did.  But this time, I asked God for guidance.  To help me be the mother that my son would need.  I felt a calm come across my body.  I was finally at peace with the fact that my child had something extra.  I began to feel bad about throwing such a pity party for those few days. 
     We went on to find out that Troy had a common heart defect for babies with Down syndrome…complete av canal defect.  He’d require surgery before 6 months of age, we’d need to adjust his caloric intake to help him grow, but all of the doctors seemed to be confident that they could fix his broken heart.  So, why should I be concerned?  But this was his little heart, he couldn’t survive without it.  Instead of worrying, I just prayed about it…after all, He is the Great Physician.
     Months passed & my Troy was born.  When I laid eyes on him, all of my worries melted away.  He was so perfect.  I had loved him from the moment I knew he was coming, but nothing can compare to the love a mother feels when she sees & holds her child for the first time.  Sure, he had almond shaped eyes, but they were the brightest blue I’d ever seen & those eyelashes just draw you in.  The bridge of his nose was flat, but it was so adorable….matching his face just impeccably.  Those were the only two markers he had.  The back of his neck wasn’t thick.  He didn’t have the single palm crease.  His tongue didn’t protrude.  He was gorgeous, well of course he was, he looked just like his Daddy.  I felt so ashamed of my selfish attitude that I had just a few short months before.  I wasn’t scared anymore…the fears were gone.  When I looked at Troy, I didn’t see his extra chromosome.  I didn’t see his heart defect.  I saw my son. 
     I felt pure shame that I had those negative thoughts, feelings, & questions on the day that the Perinatalogist told us he could have Down syndrome.  I felt like, by acting like a selfish baby during those first few weeks, that I had let my son down.  That he'd be ashamed of me for being so vain & questioning God's will.  
     Days, then months passed.  He had his heart repaired…then repaired again…& again (to learn more about that story, look for the blog post titled Troy’s Journey, dated 4/27/11).  The ‘statistics’ say that he may not talk…yeah, right.  He has a wonderful vocabulary.  I tried teaching him sign language, but he wouldn’t have it.  He wanted to talk!  He did pick up on thank you, please, boy, girl, more, & fan.  But that was it (he still uses fan, more, & thank you occasionally).  Now he can speak in sentences.  He’s learning the alphabet, numbers, & colors.  I’m so proud of his latest accomplishment…if you ask him “what’s your name?”  He’ll say “Troy!”  And if you ask him “how old are you?”  He will reply, “three” (as he tries to hold up 3 fingers to show you).  The ‘statistics’ say that he should walk by age 5, well they were wrong again.  He walked at 26 ½ months (his physical therapist said that he would’ve walked sooner, if it wasn’t for his heart surgeries).  He has accomplished so much that it would take a book to show it all.  He seems to find a way to amaze me each day. 
     Being the mother of a child with Down syndrome has taught me so much.  I’ve learned patience (well, that is still a work in progress, but I’ve learned to be more patient), understanding, to be more kind & less judgmental.  It has shown me pure, unconditional love.  I also cherish the little things in life & every milestone is so much sweeter.  Having Troy has shown me to cherish every second of life, because you never know when it could be all over.  And watching my other children with Troy warms my soul.  They all truly love each other.  My oldest son (keep in mind, he’s a teenager…almost 16), plays with him every day.  When we go to get in the truck to go somewhere, he’s the one putting Troy in his car seat.  My daughter (she’s only 5 months old) thinks he’s something.  He can just come up to her & dance & she will laugh uncontrollably!  I never thought that this little boy could show us so much.  I know that God gave Troy to me to make me a better person.  I am reminded of this verse:  Genesis 1:27 “So God created mankind in His own image, in the image of God He created them; male and female he created them." As translated by me: God made EVERY ONE in his image. Yes, EVERY ONE...meaning my Troy! And the last time I checked, God doesn't make mistakes. So the next time you see someone with Down syndrome, don't look down on them. Don't feel sorry for them OR their parents. God knew that their presence was needed, JUST THE WAY THEY ARE! :) I thank you, Lord, for giving me Troy...he is such a blessing to me & our family!  You know, I never knew I wanted a child with Down syndrome, until I was given one.  Now I think the world would be a much better place if every one had a child with Down syndrome...because every one would know what I know & feel the way I do.  That people with Down syndrome are perfect, because God made them that way!  And they would know what LOVE is.

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