Yesterday marked another hard day for me on our journey with Judah. It was his third consult with the plastic surgery department docs at CHO. We had our first appointment in about a year last month and after leaving, I felt totally overwhelmed at the thought of surgery around Judah’s second birthday. We made a follow up appointment with both of the Microsurgeons specializing in hands so that they could look at his anatomy and x-rays together and talk through how they would accomplish their “work of art” as one of the surgeons said. Of course the only day and time where both doctors were available was a morning after I’d just worked a 12 hour night shift and Colby was in class, and therefore, unavailable to come with me!
Thankfully, God has placed some amazing women of faith around me that always come to the rescue! Caitlin stayed with Eden and Megan drove from the City (aka San Francisco) to meet me at our house and drive all the way to the East Bay (aka Berkeley/Oakland) so I wouldn’t have to go alone. Thank you so much girls, don’t know what I’d do withoutcha! When we got there, they were running behind so even though our appointment was at 10:15, we didn’t get into the exam room until almost 11:30!
I was armed with my list of a million and one annoying “nurse mom” questions ready to walk out of there feeling victorious and prepared to face this surgery head on! That feeling was shot down after about five minutes. The plan we had become comfortable with on his right hand was a process called policization. This is, in a very basic nutshell, turning his index finger into a “thumb” by making a bigger space between the index and middle finger and wiring the index finger to go under the rest of the fingers, like a thumb would. On his left hand, they would try to do the same thing with his “tiny thumb” (what we have affectionately named the super small, somewhat deformed digit on his left hand). We knew it would be harder on the left side, but still possible.
As they were looking yesterday, it became clear that the new plan of care for the left hand would be to amputate the “tiny thumb” and turn the index finger into the “thumb” making a three fingered hand…but one that would likely be much more functional. Boom. That was such a blow to hear the word “amputate” in a sentence talking about my little boy. He went on to say that, of course, cosmetics were totally out of the equation and was totally beating around the bush…I finished his sentence knowing he was trying to say (in the nicest way possible, of course) that his hand already looked abnormal, so it would be better if it looked a little more abnormal, but was at least functional. They went on to say that the plan would still be the same for the right hand, but they would probably want to do the left hand first since it had better blood flow to the index finger than the right. I left the exam room feeling totally overwhelmed again with an appointment to come back in three months.
On the drive home, I was talking to Megan about everything and saying that I realized that if taking away his tiny thumb would be the best thing for him functionally then I would totally want to go ahead with it, but it was so hard! It was just a tiny thumb, it’s never been able to move, it looks kinda funny, so why did it feel sad to hear that it needed to go? Because, even though he never used it….that tiny thumb is part of him. It’s part of what makes Judah Brewer my little Judah Boy. I tried to choke back tears as I said, “It just feels so wrong to think about changing something about your baby that God created.” I know that God has allowed us to be in a place where Judah can get the therapies and surgeries to make his life better and his arms and hands more functional, but it is so hard to face the fact that Judah has Holt-Oram Syndrome, it will affect his life for the rest of his life….and there is nothing we can do about it.
We know he will overcome, learn to do everything his own way, that God made him this way for a purpose, that every child has their own individual challenges to face and on and on and on…we’ve heard all of these things from everyone since the day he was born and we know they are true. BUT that doesn’t make days like yesterday any easier and some days, you just have to let yourself be sad…let yourself mourn the probable loss of a tiny thumb. The mother’s heart beating in my chest just needs to take a day or so to cry a tear or two and be sad before I can buck up and face the next challenge, head on. The mother in me has to deal so I don’t let anger creep in as I hear other parents talking about the issues they are facing with their kids…they seems so small sometimes and it is tempting to point that out! But I don’t want to let jealousy and anger take root and allow bitterness to grow. I need Judah to see that we are more than conquerers through Christ and even though we are pressed, we are not crushed.
We need prayer for strength as we get the paperwork together to get a second and possibly third opinion at Shriner’s Children’s Hospital in Sacramento and maybe Stanford’s Lucille Packard Children’s Hospital in Palo Alto. We need wisdom about which surgeon will be best for for Judah. We need to peace to know that even if we move away from the Bay Area after Colby graduates next year, God will provide a way for these surgical procedures to be completed with the surgeon that started them. All and all, we just need to abide in our Lord, Christ Jesus.