My name is Tabitha, and I am a mom of a special needs child.
Those words sound like a confession, but honestly, like many things in all of our lives, it was not a title I expected to acquire.
Brady is 7 years old. He has multiple diagnoses including hydrocephalus, cerebral palsy, seizure disorder, developmental delay, sensory processing disorder and cortical vision impairment…just to list some off the top of my head. Now for a mom, or even just a human being, who expects everything to go according to plan, life seems out of control most of the time. Brady has shown me there are some things I just cannot do anything about and that’s ok. Well, Brady and marriage. Ha! I also have a wonderful husband and I am convinced there are 3 things that have saved our marriage:
1) God (by the way, I love Jesus!)
2) Google (after all, if you disagree on anything, Google knows the answer.)
3) Sometimes, it’s just best to be thankful that something got done and you don’t ask HOW. (Because it’s definitely not the way I would have done it.)
In any case, I had a new “out of control” moment this past week. Brady is on the Ketogenic diet for his seizure control. His Keto team recommended that he have a bone density scan completed because the diet is acidic, and he is not weight bearing all the time (not standing or walking). So, we completed the test a couple of weeks ago. This last Saturday, I checked the mail. I thought it was just a bill from the place we had the scans completed, but it was actually the results of the scan. I didn’t expect the results to be great, but I definitely didn’t expect to see the word “severe” in front of the word “osteopenia”. A new diagnosis. Ugh! Immediately my thoughts started going to, “How did we get here?”, “What did I miss?”, “Why didn’t we check this sooner?”, “I failed him as a mom.”, “I should have put him in the stander more to bear weight.” Because that is what every good mom does, right? Blame herself. I also thought, “Why did I check the mail on a Saturday?”
So, there I was. It was a weekend. No doctor to call. So, I turned to Google. I didn’t find out much more than I already knew. I knew what I really needed was some time with God. Sunday morning rolls around. Jeremy, my husband, left to go out of town. I didn’t have the energy to smile and talk to other people, so Brady and I set out on an early morning walk instead of going to church. I began just praying and confessing what the Word has taught me over the years. And some thoughts came to my mind.
A diagnosis is just that. It’s some words on a paper. It doesn’t define who we are or who we will be.
It does typically create some sort of action to improve our current situation. We had been down this road so many times before. So, I should have learned by now, right? I usually take the long way and get lost a couple of times. In any case, if we had accepted all the things the medical profession has said about Brady over the years, well, he would not be where he is today. So, I told myself, this just changes our course of action, it does not change the amazing, strong boy that we love. He is still the same beautiful boy that God created.
So, first thing Monday, I began calling doctors. It took several days, but I finally got him an appointment for Thursday with the Keto team to discuss the results. As we were parking in the garage for the appointment, Brady began celebrating in his car seat, smiling and laughing. I realized the song on the radio was the Mercy Me song “Greater.” Brady always gets excited on the part that says, “Greater is the One living inside of me, than he who is living in the world.” I recalled that same song was on the radio the day I drove him to an appointment with a heart surgeon to discuss his open heart surgery. Both appointments were to discuss a new diagnosis, and although as a parent I was struggling emotionally, I have sweet Brady rejoicing in his car seat for his God is greater! Thank you, Jesus, for that reminder.
The Keto appointment didn’t give me the information I wanted. Basically, I wanted to fix this problem today, but we did get a referral to an Endocrinologist. Woo hoo, another specialist! Now, we wait to get in to that appointment. Meanwhile, I am making sure he gets in his stander every day because weight bearing helps bone health. The new specialist will be able to give us additional information about supplements that could help other than what he is already on.
Today, I have given up control. There are no guarantees that I won’t try to take it back tomorrow. No judgement, I am a work in progress.
Someone recently told me I have an anxiety disorder. At least that diagnosis was free. And God is greater!