How did we get here?

Some of you may not know how we got here.  Walk with me for a moment.

Aden

When Aden was born Kim and I had no idea he had Down Syndrome.  It was a complete surprise.  We went from happy parents-to-be to terrified parents.  It is a difficult thing to go from having the generic perfect picture of life in your mind to praying your son has no life threatening complications.  Kim and I often refer to it as a roller-coaster ride.  We found out he didn’t have serious heart defects.  YES!  We found out he was deaf.  Sorrow.  There are still questions that have no answers with him, How much will he develop mentally?  How long will he live?  What does he thinks when he looks and me?  Communication is difficult.

You make choices for your kids, hoping they are the best ones.  Which ear to implant first?  “No way to tell, you just have to choose.”, said our doctors.  “Right”, let’s go with the “right” ear.  After having him bi-laterally implanted we’ve realized that we really should have gone with the Left, he hears better out of his left.  There’s another question we get, “How much does he hear?”  You know, we have no idea.  He hears some sound, he reacts to his name, to clapping, he used to say “Milk”, and “Hi”, but not anymore.

Sign language.  Reading of Lips.  Do we do these things?  At first, no.  We read the literature, we studied the program at Shawnee Park and saw incredible results with 99% of their kids.  Their methodology is sound (no pun intended), it’s incredible how many 3 year olds we saw go through the total immersion using cochlear implants and walk out of that school to be main-streamed.  No interpreters, just hearing, and talking.  That’s what we wanted for Aden, we wanted to give him that chance, that chance to interact and talk with everyone.  But it didn’t work out that way.

Was it because we choose the Right ear instead of the Left?

Is his nerve damaged too much to carry the array of sounds?

Is his cochlear too undeveloped because of his Down Syndrome?

Does he not have the mental capacity to translate the sound into communication?

No idea.  No doctors can tell us.  We just do what you do.  We make decisions, we study the data, we do the research (ALL THE TIME), and then we make the call.  Not too different then other parents.  But it feels to me that the ramifications of our decisions carry so much weight.  Is that how it is with other parents?

Aden is a ball of unpredictable joy and panic.  He’s a 4 year old in a 9 year old body.  He has little idea of consequence, he could just as easily run out in front of a car as give you a hug.  But God what a blessing he is in our lives.

Do we give up o our dreams of a big family?  Do we chance having another child?  What are the chances this would happen again?  Now there’s a question they could answer….

Matthew

It took a long time to decide to have another child.  But we spoke with many people, geneticists, doctors, etc.   They all told us the same thing, “You have an increased risk of having another child with Down Syndrome, but no other conditions.  A 25 year old has a 1 in 1250 chance, yours is probably 1 in 100.”

1 in 100. 1%.  We saw that as not too bad.  I wasn’t planning on fathering 100 kids.  1 in 100.

We so wanted Aden to have a sibling.  Someone to play with, someone to learn from, someone to be there with him.  Someone to learn from him.  We didn’t want him to be alone.

So we tried again… but we lost Matthew.  When Matthew died we were devastated.  What was worse was getting the genetic results.  Triploidy.  I remember the look on the geneticist’s face when they told us.  She couldn’t believe it, the chances of having two children with the same parents with two completely different non-hereditary chromosomal conditions was “unheard” of.  Let me explain that, for those that may not quite catch it.  Triploidy has no risk factors, not even maternal age.  It’s usually considered a “one-time” tragedy and is completely random.  Sound familiar?  He laid out that our chances were no different if we tried again, absolutely no different.  It didn’t increase our risk of having another child with problems, it didn’t lead us to a cause, it was just a “1 in 10 billion chance of you having two kids like this.”

Gabriel

“How did we get the courage to have Gabriel?”  Kim asked me this the other night.  I remember sitting in the OB’s office, getting the results on Matthew, and thinking to myself, “I will never do this again.  Never.”  The pain in Kim’s eyes was too much to bear.  The fear of having another child with mental and physical disabilities was horrifying.

The answer came down to Aden, I think.  Kim and I knew he needed someone, and I think we did too.  We really wanted a big family.  It took some time, but we did try again.  During her pregnancy Gabe had a kidney condition, one that Aden had.  We were terrified the entire time, panicked, stressed, constantly worrying and praying.  We choose not to do an amnio though, he had no other risks or conditions and were not going to jepordize his health for our peace of mind.  We’d have to wait and find out when he was born.

When Aden was born, Kim couldn’t “see” the Down Syndrome.  I could.  I saw it instantly.  It was the first question to the doctor out of my mouth, “Does he have Down Syndrome?”  I had seen it before, I recognized it.  Kim’s not a visual woman (which probably benefits me more then any man on the planet), and she couldn’t see it.  I had to ask her, before she went into labor with Gabe, “Do you want me to tell you if he has it?”  Yep, she did.

He didn’t.  He was fine.

Ethan

Ethan was an easier decision.  The doctors were right, the chances were remote, we’d knocked the ball out of the park with Gabriel, let’s go for another inning.  Big family.  4 kids.  Let’s do it!  We had him, no complications (his heart rate dropped a bit in labor but everything went ok).

So we were 2 for 2 now.  We’d had 4 boys.  We really wanted a girl though… although I had Kimberly comfortably outnumbered we had to even the odds a bit. 🙂

We’d listened to the doctors, they’d told us that we had a good chance of having a genetically standard family.  Last spring we were considering on maybe starting last summer to try for a girl.  God had other plans though, and Alexandria was a “surprise” pregnancy.  🙂

There is clearly something that doctors do not know.  We must be a genetic case study.  If you’re a geneticist and you want to win the Nobel prize by figuring this all out, we’ll happily hand over some dna for testing.  Maybe we’re the key to figuring out the chances for others.