There are simply no words to express how heavy my heart is right now. I should be excited….the kids are all going back to school in just over 24 hrs yet my heart is so heavy that I can’t adequately explain how I feel. I’ve always been a very transparent person, and I know these last several days it’s been written all over my face that something is wrong. I just haven’t been able to say it, share it, vocalize it. But here I am because as I’ve said a million times and will continue to say a million time more, this is my life – our life – and right now all these lemons are not at all anything close to lemonade but I’ve always felt like life is supposed to be shared.
August means it’s time to face the music with school again. And with school comes paperwork, meetings, notes from the doctors, lots of phone calls, getting all the supplies together. There’s diapers, wipes, snacks, medication, tube feeding supplies, formula. Stuff kids aren’t suppose to need at school but that my Ryan can’t survive without. And with the beginning of the school year comes another notch to carve out of his educational tree but there’s not any mental gains to go with it. Sometimes it bothers me more than others, and this year is one of them. I guess I forget over the summer how stressful the school year is with him because I don’t have to be constantly waiting next to my phone for the next phone call….”Ryan’s having lots of seizures. What should we do? Are these normal? Can you come?” or “Ryan’s having a bad day.” or “Just wanted to let you know when we tried to do Ryan’s tube feeding some of the formula spilled out.” or “We’re out of diapers…or snacks…or medications….or it’s time for new tubing.” It’s always something and when we get to sleep in, spend our days doing whatever we want, watching the older kids come and go all day all summer, I get to forget Ryan isn’t normal. Forget he requires so much darn work to go to school. Forget he can’t just strap on his backpack and be so excited to see all the friends he missed over the summer like the other kids. Forget he’s not going to bring home a spelling list for us to practice or be excited for the next field trip. Forget that having a hundred seizures a day isn’t normal and freaks people out. Oh Ryan enjoys school eventually but the beginning of the school year always means stress – especially for him – and adjustments, tantrums, new paras and teachers who don’t know and understand him. It means lots of explaining and listening and planning. And I’m OK with all the work it takes to get him back into a routine because eventually he absolutely loves school and all the attention, but it’s still hard. Really hard. It still hurts so badly cutting to the core of who I am with all my overwhelming emotions and thoughts.
So bear with me as we start a new year. I’m not good at pretending everything is fine and dandy. As Travis just told me the other day “Kim, just get it out because it’s not you to hold everything inside.” And he’s right; I’m a talker, a vocalizer, a spill-the-beans type of person. Always have been, always will be whether anyone – including myself – likes it or not. And that means it’s my season to really grieve and hurt and cry. And boy are the tears coming. I’m just simply not very strong right now, and I guess it doesn’t do any good to pretend I am. I just can’t talk about it, can’t keep opening my heart to people, can’t keep telling the same story over and over again. Ryan is so much of the very heart and soul of who I am, of what defines my life. It’s sacred ground. I know he is here for a reason and part of that is to impact others. So I have to do what I feel God has called me to do…..share our story even when it’s hard and my heart is breaking.
This whole world of raising and caring for a disabled child is by no means easy, and while I love that little boy with every fiber of my being, I can’t deny the pain that comes side by side with the joy of having him in my life. Some days are just more rainy than others and right now, there are a lot of rainy days. But I also know that eventually the clouds will pass and the sun will shine. There will be many hurdles before that happens, but I know brighter days will come. They always do.