Double Digits

I just couldn’t let another week end without mentioning a HUGE EVENT in our family life.

Someone turned 10 last week.

A big boy and his preemie sleeper

A big boy and his preemie sleeper–taken in 2009

One of the reasons I don’t bother writing birth stories is that it’s usually more information than the male readers of my blog ever needed to know. Another is that Trooper’s birth was scary. I was 22, six months married, and had absolutely no idea what was going on, why my water broke, and whether or not the baby would live. In fact, I was sure he would die. Just writing those sentences puts me in a tremble.

Then the nurses and doctors came in with their prognoses. One thing that cheered me was that the statistics were getting better for Trooper–he’d have about a 35-40% chance of survival.

But he would never be “normal.”

He would never be happy.

He would ruin our lives.

We would probably divorce over him (we were told this twice).

“Are you sure you want us to keep him alive after the birth?”

And through my shock and pain and fear as I lay there all I could think of–and this is honestly what I thought–He is a baby born into this hospital. That makes him a patient here. Why the h–l wouldn’t you try to keep your patients alive?!?! Isn’t that your JOB? Isn’t that what you are here for?!?!?!?! Isn’t that why we came in?!?!?!

Instead in a small voice I said, “If God wants him God will take him. Keep him alive, at least let us baptize him before anything happens.”

The moment he was born he was whisked to the waiting NICU staff. I remember Haus Meister saying, “He’s here, he’s ours, he’s beautiful.” They paused the briefest moment for Haus Meister to take the tiny holy water bottle we’d grabbed on our way out the door and perform an emergency Baptism. And then I knew Trooper was going to be taken care of, and I relaxed a bit for the first time in 24 hours.

10 years later….

trooper

 

He’s here. He’s ours. He’s a ham.

He has cerebral palsy, autism, and sensory processing disorder. He has challenges he fights daily. He is so proud of his accomplishments.

He is, and I stress this, THE HAPPIEST KID I HAVE EVER SEEN.

He has enriched our lives beyond measure.

We are still happily married.

We thank God for each day we have with this boy.

We thank God for the special nurses who fell in love with our boy, especially the night shift team we got to know so well–it was the only time Haus Meister and I could visit together. Rusti, Courtney, Christina, Tricia, and Debbie. I have never forgotten you. Drs. Kennedy and Thomas, God bless you too. I know how you fought for our boy. All the respiratory therapists, one of whom actually passes us in the speech therapy office and smiles to see that fragile baby now standing 4’9″ and weighing 74lbs.

No, it is not an easy road to follow, raising a child with special needs. It challenges you, stretches you–even sometimes to what you think might be the breaking point.  You learn more medical vocabulary than you ever thought you would need. Your speech/OT/physical therapists go on your speed dial. You learn to rearrange your life to adapt. Some activities you drop all together, some dreams you postpone indefinitely, and sometimes it takes you a while to figure that out.  Sometimes you fight denial for days, months, years. Sometimes you find yourself fighting the apathy of a world that doesn’t understand the value of a life that isn’t “normal.” You can couch it in any sugar coated term you want, but in boils down to the fact that they think your kid isn’t normal, that they think your kid is useless. 

No one is useless. And so you pick up and go on, knowing that it’s your lifework now to help this person entrusted to your care. It is both your cross and your reward. 

What do I mean by that? Sitting next to the hospital bed for the nth time isn’t a treat (cross). Seeing him smile when he does his homework correctly–we both feel like a million bucks (reward).

It is worth it every step of the way.

Once as we left the grocery store with the bagger pushing our cart to the van–a complimentary service by this grocery chain–the gentleman turned to me and, gesturing toward Trooper, said, “I bet he’s a real challenge for you, huh?” I closed my eyes for the briefest space thinking for the millionth time that I wished people wouldn’t naturally assume that if someone doesn’t speak, then they must be deaf as well. Trooper can hear and process exactly what we are saying. Then I thought amusedly that most of the time my typically developing children give me more potential for gray hairs than the Trooper does.

So I smiled and said, “No. If there are challenges we face them together. We are a family. And we are happy.”

We love you, our big 10 year old Trooper.

You are worth everything. You always have been, and always will be.

We are so excited to see what the next 10 years bring you.

IMG_3098(Watch him ask me for a horse now)

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5 thoughts on “Double Digits

  1. Jeannie says:

    What an awesome tribute! As I mentioned in my welcome speech at the Nov 16 party, he is one of my little heroes & inspiration to stay strong these past 8 months. Have a wonderful celebration!

  2. What a lovely post! You have captured so well not only what being a mother means (“You learn to rearrange your life to adapt. Some activities you drop all together, some dreams you postpone indefinitely, and sometimes it takes you a while to figure that out.”), but being the mother of a special needs child. Your family is richer for being entrusted with him. I don’t think people realize that with the challenges comes a deep grace of God’s love. God bless you all and Happy Birthday to Trooper!

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