I read an article today and shared it on Facebook because it resonated with me so well. I could have written it myself. It was about special needs moms and what people may not know about them. It was so very accurate. It brought me comfort to read it because today was one of those days where I felt like I could not relate my emotions and experience to anyone. I felt alone, and misunderstood.
Today was one of those days when I cried because I was so brokenhearted. Not because my daughter has a disability, or because I was having some sort of pity party. No, I was sad because I think I just needed a hug. Or an understanding ear. We were at yet another doctor’s appointment early this morning. A specialist. A specialist who is known around the world for his work, and has written many articles on the subject of movement disorders, which is why we were seeing him.
I had high hopes today. I did not realize I had those high hopes until I left the office in tears. Why am I upset? I had to process it for a moment. I realized I subconsciously had expectations that he was going to give us the magic formula today. He was going to tell me exactly what was going on with Rylie recently and tell me exactly what we needed to do to fix it. I was trying to explain to the doctor how significant certain symptoms were. I wanted him to see my video I made of her displaying the symptoms. I wanted him to examine her on the table carefully and take in every word I said and realize that I am scared. I am nervous that these treatments are not going as we had hoped. Instead he gave an explanation and suggestions on the direction to head next. This man is brilliant, for real. I feel small and slightly unintelligent sitting in the same room with him because I cannot possibly imagine how much knowledge is contained in his head. I want to trust him, and ultimately I’m pretty sure he probably knows what is going on and is giving her a fair assessment. And yet I still left feeling empty and sad.
Why? I realized it was because he did not see the whole picture. He did not see me battle and wrestle with all my might just to give my daughter a bath. He was not there every night the last two months as I tried and tried again just to get her body settled enough to tuck her in at night. He was not awaken those times she was hanging off her bed with her body completely contorted in the middle of the night. He does not see my every day struggle just to get her in and our of her wheelchair. And somewhere deep down I think I wanted him to acknowledge that in some way. To let me know he understood, and that it was going to be okay.
He did his job, yes. He did his job well. He carefully assessed her, prescribed the medications, and gave me the suggestions and sent me on my way. I got in the van and suddenly thought, if anyone says anything to me at all, even a hello, I am just going to cry my eyes out. Like that ugly cry where you can’t breathe and your snot cannot be contained. I was SO sad. I think some days like these are also a stark reminder of real life. I seem to have cycles where I run and go and push, and then my emotion bottle gets so full that it tips over and they run everywhere completely unconfined.
You forget sometimes just how different your family is, or your child. Your head is down and you are buried in your world of medication alarms, appointment schedules, and fighting (literally) for handicapped spots until someone stares the wrong way, or says the wrong thing and then your head bobs above the water long enough for you to remember just how different your life is. Suddenly you are keenly aware of how every single detail in your life seems completely unrelatable to anyone and you slowly sink beneath the surface of the ocean of your tears.
Dramatic, right? Oh, I know. I won’t deny it. But I am also learning, you see. I know in my head that my God is bigger than all of this. That He will walk me through it and comfort me if I let Him. Somehow though, I still struggle. I struggle with wanting people to “get it”. I want justice and understanding, and maybe a Senate seat…… But I am having to realize that none of those things may ever happen. And what then? Then there is my God. I can lay all of those things before Him and receive the peace that only He can give. So while I know it in my head, I need to get my heart there as well.
And do you know what other important lesson I am learning? That is is a choice. I can choose to let these things get me down, or I can choose to take them straight to His feet. It is often a hard choice for me, to let go of my justice-seeking and focus solely on Him, but at the end of the day, it is ultimately what I need to do for me, for my family, and for my sanity. The kids and I were recently studying Galatians 5:22 and we were talking about the fruit of the spirit and what it really means. If Christ is not my everything and my center, then those fruits, (Love, joy, PEACE, patience, kindness, goodness, gentleness, and self-control) are not going to be evident in our lives. It is a process, and I am getting there one day at a time. I’m so grateful that tomorrow is another day, and that His mercies are new every morning!
Valiant 