Last week started off with M finding a broken bird egg on our front porch. Then before I realized it, he found the dead chick laying close nearby.
“Mommy, why did he have to die?” “Why doesn’t that bird get to grow up? “How did it happen?”
Then my questions start to go up to God.
“Why did it happen?” “Why did my son have to find it before me?” “How do I answer this one in a way for a four-year-old to understand?”
I don’t know that I did the best job. I said something about how God gets to choose how long a life is, not us. I don’t know why He chooses what He does but I do know that He’s good. God does things we can’t see or understand because He knows things we don’t. Lessons on God’s sovereignty that I’m learning on a much bigger scale in my life right now.
So one summer morning that began facing the injustice of our broken world in the form of a dead baby bird on my porch, continued on well into the week. And I will say that I invited it to coming rushing in all at once because I scheduled three specialist appointments for N (urology, opthalmology, pulmonology), three therapy appointments, and one stop at the pediatrician’s office for a vaccine all in the same week. So next time I do that will someone please tell me I’m crazy in the head! I’m slow to accept that even though I think I am a superhero, I am so not a superhero, and neither are my kids baby superheroes as evidenced by what follows.
At the urology appointment, the ultrasound tech told us that N’s right kidney is still substantially smaller than his left. To put it into context for you, he told us that his right kidney is about the size of a 25 week fetus. That caught me off guard. I knew it was small. I just didn’t have anything to base it’s size off before. The tech also saw pockets of fluid in there during the ultrasound. Basically, there’s no real hope for that kidney to do much of anything for N. The left one is growing. However, we’re still dealing with the kidney reflux. In the next several months we hope to get answers as to whether or not it’s an abnormal ureter causing the reflux or bladder dysfunction that’s causing the reflux. We are hoping for the former because there’s a good chance it can be corrected with surgery. The latter makes things way more complicated and puts his working kidney at high risk of further damage. That’s the update as of this week and we are to come back in three months to repeat the ultrasound all over again.
The opthalmology appointment was the easiest because we were in and out of there in no time. Basically we were told to keep on patching N’s left eye in attempt to strengthen the right one. I learned that he has no depth perception because his eyes are not working together. That explains a lot of why I see him look past things or grab for toys in the wrong way. Again, it’s more wait and see but the doctor told us that he doesn’t typically want to operate as early on medically fragile kiddos. We will likely be considering surgery to correct the muscle in his right eye somewhere around the age of two. In the meantime he said come back in three months.
On Friday we had a follow-up pulmonology appointment. That appointment was the most uneventful because his breathing has been so, so much better. (Thank you God!) We didn’t change at all what we’re doing, which is simply monitoring him. I’m thankful that the conversations about a trach or jaw distraction surgery have all seemed to fall away and I hope they never come back around. The doctor said to come back in four months. That’s when cold and flu season starts up. Therefore, when my husband brings home some of those not-so-lovely viruses from the office. So at least we have that to look forward to.
It was also a big week at therapy. At physical therapy Katie put N in a gait trainer and at feeding therapy he started a new technology called vital stim. She put him in the gait trainer on Tuesday and he instantly started pushing with his foot to get to the carrot in front of him. Since he still isn’t sitting, he longs for more of an upright position. It gives him a different perspective of the world. I think the fact that he enjoyed the trainer so much, made me seeing him in it so much better than it would have otherwise.
That same time my husband had a break in CF clinic and came over to the rehab center. We had just taken N out of the trainer when he rounded the corner. “Was he just in that thing?” Yes, honey and he loved it! So we put him back in to show daddy his tricks. We were all cheering for him. Even M was trying to motivate him to step forward with enticing toys. I loved seeing M so ready to jump in and participate. He would have pushed him (hard) around the therapy gym if we would have let him. Part of me just wanted to give him free reign to play with N. I don’t to squash even an ounce of enthusiasm he has for his little brother doing things. It’s just to sweet to see that little relationship blossom.
The next day we started the vital stim. Vital stim uses a little device with the power of a AA battery to shock the muscles in N’s neck into swallowing in a coordinated manner. The therapist can control the strength of the shock. I knew my kid had a high pain tolerance but wowza! This proves that it’s much higher than I even expected. Jessica, his therapist, said she put it on herself and was only able to get as high as a six. N got all the way up to an 18 before he started to show subtle signs that he didn’t like it. It was only his first treatment but he did swallow some small amounts of pureed squash.
I’m so proud of how hard N is working. It’s about to get harder too. I decided to bump physical therapy and feeding therapy back-to-back. The commute is wearing us all out, so if N will tolerate it, we can get two done in the same day. No matter how you look at it, it’s all injustice of our world. N has to do so, so much more work than a typical baby. We have to put in so much more effort than a typical family. We are still learning how to make all this work. We’re still getting our wings so to speak.
Despite what I learned on vacation, I did schedule too much for this past week which led to a feeling of being overwhelmed by the brokenness of N’s body. (In my defense I set those appointments all before my month long break.) I did realize that all of those follow-up-in-three-months appointments are on the same rotation and I need to somehow change the spacing of those. And I am starting to accept N’s limitations and disability more and more. However, when additional injustices in this world come my way, I either get disproportionally angry or feel my knees begin buckle. The mean kid at the children’s museum who refuses to share toy eggs from the fake farm with my four-year-old son, who for once isn’t grabbing but actually being patient and polite. The lady who cuts me off getting on the on ramp of I-35 for no apparent reason. The mom who does a double take on my toddler being fed by tube in public. The baby bird egg that fell out of the nest. All of these are not fair. All injustices of this world that I find difficult to navigate and are not necessarily mine to fix.
Thanks to God there is new life and new hope around every corner. The mother dove that sits high above our front door is still busy sitting on eggs. Low and behold we saw another baby bird. This time she was hopping along our welcome mat. She was so cute and fuzzy and very confused by seeing her reflection in our kick plate. It was really quite fun to watch.
“Mommy, can we let her inside?” “I think she wants to come inside!”
I wish we could M. I wish we cold. But as the saying goes, the shell must be broken in order for the bird to fly. And this one broke her shell in the nest, not on the ground. She is learning to get her wings. She’s a little confused now and fluttering at her refection, but we best let her be. This one is meant to fly.
“Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father. But the very hairs of your head are all numbered. So do not fear; you are more valuable than many sparrows.” – Mac 10:29-31
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!