Without a Crystal Ball

Our Journey through Chronic Illness

Dear Friends and Family,

I wish I could tell you that all my days are happy, easy and full of smiles. I wish I could tell you my medically fragile child used the potty, can count to 10 and learned how to spell his name. There are days I wish I could relate to your struggles, and I wish I could smile more, worry less and simply dream about the future. Unfortunately, this is not the life I was given. These are not the moments I can brag to you about and share with you on my blog. The things I get excited about you may not understand or comprehend why it’s a big deal. We celebrate small victories, we measure success differently and instead of planning ahead, we live day to day.

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I know you want to tell me it will be OK. You say things to me like, “God only gives you want you can handle,” “You are his mom for a reason” and “Be grateful you have him with you.” I don’t know if you know this, but sometimes when you say that, it hurts my heart to the very core. It isn’t because I don’t believe I can be the best mom to my son, Von. It isn’t because I believe God had it in for me when I was given a child with a longer list of diagnoses than I care to count or know. It’s definitely not because I am ungrateful. It’s because you can’t fix this situation. Nothing you can tell me is going to make Von well. Nothing will eliminate the challenges we deal with on a day to day basis.

It’s OK for me to have bad days. I’m certain you have bad days as well with your healthy children, neurotypical kids or even with yourselves. I promise when you have your bad days, I will not remind you to be grateful. I will not tell you that you are only given what you can handle. On those days, I will simply say “I’m sorry.”

We do have really great days here. We watch a child beat odds each and every day. I marvel in his strength and perseverance through testing, lab draws, surgeries, endless therapy appointments and medication schedules most of us would cringe at. He smiles all the time. In fact, I would venture to say he’s one of the happiest children I know. He rarely has tantrums, and when he is upset, it’s generally related to having to get his daily shot of growth hormone or take an inhaler he doesn’t want to take. I know these things have to be given to him to grow and live. He doesn’t know that, and he can’t understand why we are doing all of this. I hope one day he can communicate to me that he appreciates all this effort. My goal is to keep him alive.

While you dream of your child’s first football game, getting their driver’s license and going to prom, I am dreaming about my child living and getting to high school. I am dreaming that my child will have the health to go to elementary school. I am dreaming that one day he will be able to potty train. I dream about having conversations with him that are meaningful and that he will be able to maybe one day write his name and say his colors. Until then, we keep on pushing through therapy and appointments, and we keep teaching him everything that for many of us comes easy. He will learn it all in therapy and hopefully do some of it well.

However, on my bad days, please remember that I am not ungrateful. I am allowed to feel upset or angry about this journey. It’s OK for me to be mad that my child has to fight to learn everything many of us do naturally. I am allowed to feel frustrated that he’s on eight medications to do what a normal body does on its own. It’s OK for me to feel badly. If I didn’t I would not be human. So please remember you do not have to fix this, fix me or fix Von. We will make it. He will get there. There will be bumps along the way. We will take this one day at a time. Please remember we are only human, and we are doing our best.

Your Friend,

Katie

This was featured on the Mighty

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One thought on “Why I’m Allowed to have a Bad Day as a Special Needs Parent

  1. Rosemary says:

    Dear Katie,
    I am so blessed to see what this site is able to do for the mothers of ” wonderful ” special children.
    As I live through the emotions of your words I remember those times all too well. In the same time I stop to remember I made it and so will Katie. For each of your struggles comes many blessings that only you are able to see.

    Be Well,
    Rosemary

    Like

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