Today, I am thankful for the delete button on my computer. I wrote a different version of this post when I was super emotional and on a percocet hangover from a flare up last night. But, after lunch and hanging out with Katherine (woohoo!), I’m feeling more stable and able to write what I need to say this week.
But, before I get there, Jake’s appointment today was, as always, really good. He’s progressed far enough for us to be considered for a group therapy session and for me to begin a Parent Handbook which will help us even more. So, lots of high fiving and pats on the back for us this week. 🙂
But, I’ve had a really heavy heart over the last few days. I’ve found myself crying when I didn’t know I was upset and attacking my garden more vigorously than necessary. I woke up this morning with some clarity and since I want this journey to be an honest one, here it all is.
Something happened to me at Jake’s last doctor’s appointment. It was supposed to be a “let’s make sure his weight is up” appointment with his GI doctor. Instead, we left with more concerns, more suppositions on what could be wrong with Jake, and a whole ream of tests that need to be run soon, most of which involve pain and terror for Jake and me carrying around his poop in a bag for testing. The thing that got broken a little inside of me was that just for once, I want to go to a doctor’s appointment with Jake and hear, “He’s a healthy litle boy, I have no concerns and we’ll see you in six months.” I am used to my own body being broken and getting the frowny, worried face from the doctor, but when Jake’s doctors give me the frowny face, it involves a heartache on a totally different level.
I’m used to be being tough. Nine surgeries, chemotherapy, our house burning down, being lonely on an epic level over the last year have all toughened me up. In all our trials, I’ve had to dig way down and find resources I didn’t even know were there and I’ve found God’s strength to be way more than enough. I’m thankful for the habit of finding God and His strength because being “mama tough” is WAY harder than the usual tough. Holding Jake down while people stick needles in his arms, tubes down his nose really sucks. Having to go to a hospital with him every week for his therapy involves me taking lots of deep breaths and walking really fast past the chemotherapy department praying that the nausea goes away quickly. The rush of emotions gets a little easier each week, but I’m not sure I’ll ever go to a hospital and be totally fine with it. But, as mama, I don’t have the option of falling apart, giving in to my emotions or not being able to handle it when it comes to getting treatment for Jake. I’ll do anything for Jake, even if it means singing to him while he’s sobbing or standing back while he’s getting more and more stressed out during his therapy when every instinct in me is telling me to go fix it. I didn’t know that doing the right thing for my child would be so damn hard!
Even the waiting room is a rough place to be while we are waiting for Becky. Since it is a state funded hospital, there are a lot of people there who are doing state required therapy for their kids. So, they don’t really want to be there and it shows. There is one little girl who comes in every week dirty, hair a mess and lays on the floor and cries while her mother sits blank-eyed and listless. My heart breaks for them. I’ve tried to talk to her but have never gotten a response. Other moms are mean to their children or obviously have no use for them, ignoring their pleas to be played with and sit texting during the therapy appointment itself. The few of us that are involved often hold our little ones close as if to silently communicate to our children that they will never be unloved or unwanted. The “I want to fix it” part of me cries out silently for these people. I want to take care of them, help them, love them, love their children. I don’t know how to do that or always know what to say to them, but I am going to keep trying to reach out to them.
I’m also so frustrated with our insurance, with the Benik vest people, with the scheduling department, basically anyone I have to interact with over Jake’s therapy. I’ve made so many phone calls that never get returned, talk to people who are rude, don’t care or are too busy to be bothered with my problems. I have to remind people constantly to do the job they are getting paid to do. I looked up the info for the Benik vest Jake is going to get and right on the form, they say that they are going to disregard the form if it isn’t filled out completely and accurately. Apparently, I filled out something wrong since I never heard back from them. It’s just ridiculous that they get to act like that, but since they provide a service that no one else provides, they get to be butts about it and we all have to deal with it. The list of things I need to do, tests that need to get done, and items that need to be followed up on is fairly long and it would be so great to be able to make just one phone call and have it be taken care of the first time.
I think what is going on with me is that I’m at the 18 mile mark of a triple marathon. I’m tired, we’ve already come a long way, but the race is still far from over and it’s probably going to get harder before it gets better. I’ve been feeling guilty for being tired and wanting to take a break from all of this for a while. And, guilty because I’m struggling even though I know that Jake is going to be okay eventually. But, when I was talking to my mom this morning, I realized that yes, he will be okay eventually, but he isn’tokay right now. Right now, we’re doing therapy sessions four times a week, brushing and doing joint compressions four or five times a day, doing his physical therapy every day, and constantly watching him to make sure he’s sitting the right way, walking instead of crawling, taking things off his fingers that bother him and making sure that he is getting enough to eat. We’ll be adding even more to do soon and I’m overwhelmed by that prospect.
I’m sure that in a few days or weeks, I’ll get another burst of energy and I’ll feel a lot better about all of this. Even just the act of writing it down is so helpful and so I thank you for listening and loving me, even though I’m in a tough place right now.
And, I’m going to find a support group. Being alone is not a good thing under the best of circumstances, but being alone in a very unique situation is a recipe for disaster. At least for someone with my temperament.
Now that I have all that off my chest,I also want to say that there are wonderful moments, too. Jake ate my chips at Chipotle today and tater tots with Greg at breakfast on the weekend. Jake’s sign language is getting more consistent, his attitude is getting better and his sweet nature is coming back more and more. Last night, he got out one of my shawls and wrapped it around himself and hammed it up for the camera. He got tangled up in it and fell over. He came to me with tears in his eyes and cuddled up to me for some comfort. When he got feeling a little braver, he wrapped his arms around my neck and hugged me really tight. I held on to him and God held on to both of us and for those few moments, everything was very, very right in our world.