So Much More than His Diagnosis

November 30, 2016 first weeks home, first year home, hypospadias, Newly Home, November 2016 Feature - Urogenital, Urogenital System 0 Comments

I could write for days about our journey — our growth, the process, the joy, the tears, the worries, the peace. But for today, I’ll focus a little on the medical aspect of our story because there are so many unknowns, so much research, so much hope…..and knowing you’re not alone in it helps, if only a little.

But even when talking about special needs, it all comes back to… our son.

Our hilarious, brave, loving, silly, smart, empathetic, sweet 2-year-old son. He is so much more than his diagnoses and I am so glad that we didn’t let the unknown stop us. Our son had numerous (inconsistent) diagnoses in his file — it was as if whoever prepared said, ‘This could be an option, let’s write it down!’ As we investigated the file and different notes in it, the doctors basically told us that we needed to be prepared for anything — that it was all correct, or that he was gender misidentified, or maybe not, or maybe it was all incorrect.

We had fears — we questioned whether or not we were equipped to handle the spectrum of possibilities, but by that point, we were so certain he was our son. We realized we didn’t need to have all the answers now. We just needed to be able to walk with our son and advocate for him no matter what! And that we would commit to him — I cannot tell you how thankful we are that we did!

After a lot of testing and appointments once we were home, we had to sift through all of the questions from his file. He was diagnosed with hypospadias (along with repaired CHD) and we are now in the middle of researching surgeons and choosing a surgical center and doctor.

It’s overwhelming as there are many unknowns. And a lot of decisions — decisions we need to make for our son that I just hope and pray he agrees with when he is older. So on those days that I’m worried about choosing the wrong surgeon and overwhelmed by the kids’ appointments or fearing that I’m messing up attachment, I remind myself that I don’t need to have all the answers right now. I just need to do the next right thing. And for today? The day after a semi-traumatic MRI for our youngest? The next right thing is to stay home, snuggle, and spend the day just being together. And that is something I can do.

Find a support group (so many great online ones!), talk to been-there-done-that parents, research (the complications, success rate, surgical centers), ask questions (make sure you have a doctor you feel comfortable with) and follow your instinct. All of these things have been so helpful in the reality and medical side of our adoption.

But what it comes back to is our son.
And how any amount of anything is worth it.
Because we could have missed this.
And I thank God every day that we didn’t.


kayla


Resources:
Great webinars from PARC Urology
Hypospadias and Epispadias Association

– guest post by Kayla



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