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Saturday, December 25, 2010

What was it like?

When I first found out about Alexander's diagnosis - Some things I can remember like it was yesterday. The smells. The sounds. The words that were said. And .... some things were just a blur - but I do remember this.  I remember this hole that was inside of me. This deep dark emptiness - caused by the words spoken by "blunt" doctors who were "trying to help me accept our son."  And I remember becoming obsessive about reading other Wolf Hirschhorn mom's blogs.  I wanted to know how everyone felt when they first heard the news. I needed to know. So.... now that time has past - I feel I should post our story. It might help someone else who needs to know they are not alone.

Many parents of special needs children are referred to the "Welcome to Holland" essay.  Yes, I can now relate to those feelings, but in the dark early days, I could not.  Here is our story.

Early September 2009, I found out I was pregnant.  We had 9 month old twins and were very excited to have another child close in age to our twins.  Everything went smoothly until my 20 week ultrasound.  They said I was measuring "small" and that my due dates didn't quite line up with my first ultrasound. (I had an early one to determine the status of one baby vs twins.  :)   They scheduled another ultrasound.... each one with the baby growing, but not nearly as much as it should.  The OBGYN's I went to rotate doctors, so one doctor would tell me we should deliver soon and another would tell me to wait it out.  The stress of 2 ultrasounds and 2 non stress tests a week began to get to me.  Raymond and I decided to go to the high risk doctors that delivered the twins - in Harrisburg - where there was a NICU in case of problems.  We pled our case, and they agreed to deliver me.  At 37 weeks exactly, there was no growth and it was decided that I would deliver that day ... May 7.

Raymond practiced his NASCAR skills as he drove us to Harrisburg Hospital to meet our new, and as of yet unnamed, baby boy.  I just knew he was going to be ok. I just knew it.  We had twins born at 33 weeks - they were perfect.... so would this baby. This was just being extra safe.  When Alexander (baby no-name) was born - I remember being a little hysterical that they wouldn't let me see him. I kept begging the doctors to tell me if he was ok. They continued to tell me they were measuring him, but I could not see my baby due to the position of the doctors.  I asked Ray if he had Down Syndrome.... little did I know there were things disorders that could be worse.  What those doctors were doing was recording small common birth defects that Alexander had.  A hypospadia (Don't Google this... FYI) - it is just a slight curve in where the urine exits the body.  A sacral dimple. A coloboma. A pit on his right ear. A slight down turned mouth. Slightly wide spaced eyes. And a possible heart murmur.  All of these are common... but put together - they got one doctor thinking.

This pediatric doctor actually came to see us in our room the next day. (We all were able to stay in the regular room together - nothing yet had been determined). She brought a 2 sentence piece of paper.  She said, I googled all of your baby's birth defects and there is a possibility he has Wolf Hirschhorn Syndrome.  It varies from mild to severe delays and mental retardation.  It is probably nothing.  I looked at my baby.  He was perfect. He could not have this thing... we have great genes.

Next day. Sunday. Mother's Day.  D-day. Raymond went home to pick up the twins.  My amazing friend Kimmie came to visit us and spend time with me and Alexander while we waited for my family to return.  It was an increadibly unselfish gesture for her to give up time with her family to spend time with me. Raymond, Andrew, and Addison all returned and Kimmie got some great shots of the family together. It was perfect.  At the end of their stay, I decided to walk them out - so I called for Alexander (still not named) to be taken to the nursery.  When I returned.... my world would never be the same. Literally. When I got back to my room, it should have been a simple process - I call the nurse, say, "bring my baby back." and they bring him back.  Instead a team of NICU doctors came to tell me he was being moved to the NICU because he did not have the suck reflex - we didn't know because I had been nursing - and they believed he had Wolf Hirschhorn Syndrome.  They brought a paper from the Internet.  They told me he would probably die. I should spend as much time with him as possible. He would probably never eat, walk, talk, potty train, have social skills.  This is where the blurriness begins.  I remember telling the doctors that I was leaving.  I remember them calling our for some "calming drugs."  I blur for awhile until my mother-in-law comes.  I realize I can't tell her until I've told my husband - who still is not back from returning the twins - his drive was 3 hours round trip. I wash my face and ask her if she will go to the NICU with me, that Alexander was taken there as a precaution because he was born small.  I remember that I named Alexander alone before he was taken to the NICU. Raymond liked the name Alexander James... and it just seemed appropriate that he also be an "A" and his middle name be my father's name.  If he was only going to be with us for a short time, I wanted him to be........... included in our family.

Finally, Raymond came and with grace my Mother -in - Law left us to have family time. She can also never know how much that time spent not talking will ever mean to me.  It was now my task to break the news to Raymond.  Here it is a blur again. I don't know what words I used. I only know that I prayed to God that I wouldn't screw it up. And that I cried again. We walked hand in hand to see our baby.
So the tests were run. Alexander did indeed have 4P- or Wolf Hirschhorn Syndrome. The doctors then decided he would not have a life worth living. They decided he needed a g-tube because he would never learn to eat. They taught us CPR.  They ordered monitors to measure his breathing and heart to go home with us.  One special day, one of the NICU doctors came and held my hand as she told me to ignore Alexander's monitors should they go off that he was dying and let him "pass in peace."  They called the specialists for us.  They set up our initial appointments - Pediatrician, Cardiology, Neurology, Optomology, etc.   They kindly told each and every one of these doctors that Alexander would probably not make it through the first year, so let's not treat him and just make him comfortable.  Alexander is finally discharged and sent home.
Blurriness and Lucidity.... they move in and out. I know I failed the depression test 4 times. (oops) The first time was after they took Alexander to the NICU and the second time was after they told me he had 4P-.  I remember looking at my twins and getting NO joy from their playing.  I would look at Andrew and be so proud of everything he was doing and learning.  He was growing so fast.  I would look at Alexander and swear to love him no matter what.... no matter how long it took him to do things - or if he never did them at all.  But I could not look at them at the same time and rectify those feelings together. Raymond took care of everything.  He cooked the meals, he cleaned, he took care of the kids.  And I was a walking zombie... unable to cope with our new life.  This is when my obsessions began - obsessions with reading everyone's birth story.  Obsessions with looking at newborn pictures of other WHS kids to see if they showed characteristics at birth. Obsessions with reading up on WHS.
Enter 2 amazing and totally unrelated events.

** The group of twin moms who banded together, researched a Wolf Hirschhorn Conference in Utah, raised money, and all but booked our trip.  An uncle and aunt who gave up their miles for travel so we could have free plane tickets. Our church family who raised enough money that the entire trip was paid for. How could we not go?  We might not have been totally ready to enter this world... but we were entering it.

** Dr. Ladda. The man I needed to meet.  The Geneticist at Hershey Medical Center who is well respected in our area. He had an attitude that I could relate to.  Why won't Alexander eat?  Why won't he walk? Why won't he talk? His life is not written yet. DO NOT GIVE UP. Treat him like all of your other children. And Raymond and I decided to do just that.  Dr. Ladda even wrote a letter for me to take to our doctor appointments telling the other doctors that they were to treat my son.

Our summer was filled with doctor appointments.  Alexander had a few surgeries. We spent some time with the twins. We spent some time with Alexander.  We made it to the National Conference and made some wonderful friends. My confidence grew. We can do this.
8 months later.  Alexander eats by mouth. He drinks his bottle. He eats stage 2 foods thickened with rice cereal.  He is still tiny 7lbs 9oz... but growing - slowly.  Sometimes when he is over extended he will not eat and we have to put him on the pump. He has had several seizures and is on medicine for it.  He smiles socially. He plays peek-a-boo with me. He tracks to my voice. He passes toys from one hand to another. And tonight he rolled over.  I believe Alexander will walk.  I believe Alexander will talk.  I believe Alexander will eat real food one day.  I believe in him.  But - even if he never achieves these goals - I am totally, completely, and 100% in love with him. Welcome to Holland... the best place on earth.

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At December 26, 2010 at 3:07 PM , Blogger Kisses4Kaylee said...


This is such a wonderful post, and I am inspired just reading it. I wish that I could be at the place where you are now with Alexander-- in love and at peace with my daughter as she is. I am ashamed to admit how much I still struggle emotionally each day to accept and face what may lie ahead for Kaylee. Reading your story, reading about your doctors who gave up on Alex before they ever got to know him, makes me cry-- I cannot imagine the pain your heart was in back when he was born. I celebrate both you and Alex; it is by reading YOUR stories...and those of others we know who are traveling this same road...that I know I will one day be able to reach that place of acceptance without fear. I have hated Holland for a very long time-- 12 years, to be exact. I never, ever wanted to go back there. Thank you for your honesty; having a friend and support like you will help me to one day maybe see that Holland isn't so bad, and that it really is the best place on earth! xo

At December 27, 2010 at 9:50 PM , Blogger Sommer said...

Thank you for sharing. I have a granddaughter with Wolf Hirschhorn. This all sounds very familiar...

At December 28, 2010 at 12:56 AM , Blogger isdadoinks said...

We all have our stories on how we found out and got the BIG NEWS. Mine came exactly a year ago... the morning of my birthday. I can relate to your swinging emotions and the "zombie-ness". A year ago i never thought that i will ever be able to smile again. I did lose hope and I just wated to run away. But i did not have an other choice but to choose to live amongst the living. I have a family that depends on me. I moved on pretending that things were going to be okay... eventually time just passed and i found myself in a better place. Just this morning i woke up reminscing about the "Hazy" Holidays we had last year, and i'm so glad that we didn't miss experiencing it this year.

I will be rooting for your little Alexander. There is a reason that our children were entrusted to our care... they will change our lives and it will be more wonderful than what our minds conceived of it to be.

I will pray for you and your little one. Be strong and keep the faith Mama.

At April 11, 2011 at 11:09 AM , Blogger GingerGirl said...

This comment has been removed by the author.

At April 11, 2011 at 11:11 AM , Blogger GingerGirl said...

(Sorry, I can't type when I am crying. Stupid typos!)

Just read this one. (I am at crying at my desk...I am so proud of you and your family!)

I work in estate planning, and we do a lot of special needs trusts to ensure that special needs individuals have their needs provided for after their parents are gone. As such, I see and hear a lot of things, and this still touched me and burned a place in my heart forever.

Your strength, love, and determination are amazing. You do not sugar coat it. You speak from your soul, and your soul is beautiful. God bless!

At April 11, 2011 at 11:28 AM , Blogger firespark said...

I found your blog through GingerGirl (and vaguely remembered sharing the facebook link she posted about a kid who needed a service dog... now I know why :)... I am moved beyond words. I do not have a child with Wolf Hirschhorn Syndrom, but I'm rooting for you all the same. This is what the blogosphere is all about--connecting people through our words, through our stories and hearts.

This is a beautiful place, this blog, and your faith and dedication is inspiring. I should probably be making this comment on one of your more recent posts, but this is where I am and this is what has me in silent tears at my desk at work... tears for the fear and pain you must've felt at the news (because I *am* a mother, and I can imagine)... and tears of hope, joy, and inspiration for knowing that because you *believe*, your son has a shot. You are his life spark... you and everyone else who loves him. Never give up. A little determination goes a LONG way.

At April 12, 2011 at 6:30 AM , Blogger Kristen said...

GingerGirl and Firespark, thank you so much for coming to read and supporting our family. Every day I am grateful for people who write or comment. It is such great encouragement. After you read this post - you should head on over to "I can't Keep it to Myself." 2 Very different videos made at very different times in our journey of acceptance.

At June 1, 2011 at 6:38 PM , Blogger Darcie said...

"Your strength, love, and determination are amazing. You do not sugar coat it. You speak from your soul, and your soul is beautiful. God bless!"

I dont know what more to say than what was already said here.

God bless, God bless, God bless!

At July 12, 2011 at 10:12 PM , Anonymous Anonymous said...


I first met you before you were pregnant, and have grown to known you as you became one of my favorite teachers. I didn't know what an emotional turmoil that you've gone through. And now knowing Alexanders story, I would like you to know that I've had you and your family in my prayers a lot.

At July 23, 2011 at 8:18 AM , Blogger Bonnie@TheFragileXFiles said...

Amazing and stunning story. Did I mention anywhere in my blog that one of my sons also has a coloboma? I don't think I did. I should write about that. We knew about that before we knew about Fragile X, and I was unaware that birth defects tend to team up, like that.

At August 18, 2011 at 12:00 PM , Blogger Lynne:::: said...

Your life is blessed! Can't wait to hear more!

At August 24, 2011 at 9:06 AM , Blogger Gail F said...

Hello, I just discovered your blog today and I can't tell you how much the posts I read touched me. I have two children and my son has ADHD, which (properly understood) is a developmental disorder. He also has anxiety problems. I know it is nothing compared to what Alexander has, and all the doctors we have say that he has a mild case. We are lucky to have doctors, to have effective medications, to have therapists, and to have insurance that pays for (part of) them. I know that. But everyday life is still very, very difficult. He has very rigid thinking and what I call anxiety attacks -- although apparently they are not REAL anxiety attacks, which I can only imagine. We can't do things that other families do. For instance, though he is 14, we can't leave him alone at night for more than an hour or so. My daughter got in trouble at school last year because her teacher thought she was blowing off helping at the school's big fundraising event -- my husband and I had something else scheduled and she had to be home with him so he didn't "freak out" (to use his words). It is little things like that that make every day hard. My son seems okay to others, no one knows what our life is like. Life with him is a struggle because we can't make him do things, and we can't fix his brain. We can only work with him to do things himself, and work with his limitations. But a child doesn't want to do those things.

According to one book I read, parents of kids with ADHD have the same stress levels as parents of severely ill children. It is certainly true in this house. It has taught me to be much more compassionate to others, and never to assume that I know what they are dealing with. So many people are dealing with such hard things. I read your post about depression medicine and my ADHD experience has also taught me that when it comes to brain chemistry, medication is a miracle. Never be afraid or ashamed to treat what can't be fixed by willpower and grace! Be grateful that what your brain needs is actually available in a pill! How amazing that is, when you think about it!

At November 9, 2011 at 4:26 PM , Blogger Lisa said...

I dont even know what to say. You are an incredibly amazing and brave woman. Your story has touched me so deeply and has brought tears to my eyes.


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