As I sit in Jaxson's room, he is taking a nap and so is his daddy. Both of them need it. I am contemplating a lot of things right now. I am heavy hearted, although not so much for Jaxson even though he's a contributing factor. No, what I am heavy hearted about is the number of pages I see on facebook every day for kids with special needs, rare diseases and cancer. Add to that the number of adults I know who have recently been diagnosed with something and it's overwhelming. I want so badly to help everyone and it's frustrating that I can't because I can barely handle my own kids issues.
It's sad to see the sheer number if pages like that popping up on Facebook. Not because they shouldn't have pages, but because there is a clear problem with the world today. We eat so much processed food and put so many chemicals into our bodies that it's no wonder said bodies are succumbing to disease. It makes me angry and it makes me sad. What did these people, especially the kids and babies, do to deserve such treatment? What could be so horribly bad that nature decided, hey, I'm going to go after that one now? I do not think that anyone deserves to have their body eaten by cancer, or that anyone should have to fight every single day to make sure they get to the next one. There is no rhyme or reason to any of it. It's depressing.
I know we can't go through life terrified of what "could" happen, no one should go through life scared. But that doesn't make it easier to handle or watch. I don't know, my head is so jumbled today. We should get to go home tonight, but I'll be back on Monday to get Jax fitted for a new ear mold since we lost one. He hasn't had his hearing aids in well over a month, so I definitely don't want to miss it. We get a break on Tuesday, but then we're back Wednesday, Thursday, and Friday for appointments. I also have to call Dr. Pearson to see if he still wants to do the cleft surgery on the third even though Jaxson's head is done. And I'll need to follow up with Dr. Grondin in the Chiari malformation, I'm sure he'll want to see Jax again soon. And I still need to make the orthopedic appointment now that the referral is in. Plus I have to call the pediatrician for a referral to the eye clinic and possibly GI.
There's so much to keep track of with this kid, I have no idea how we've been able to keep up. And every time we think we might be nearing the end of the madness, something else pops up. This poor kid has had six surgeries and has at a minimum one more. He may still need surgery for his Chiari and tethered cord. And I have no idea what nephrology is going to tell us about his kidneys. I am not complaining, though, because some parents never get this opportunity. Their babies don't make it out of the hospital or they're given a hard time by the doctors or whatever the case may be. Jaxson is at one of the top children's hospitals in the country, and I am physically able to take him to his appointments and make sure his needs are met. Again, not every parent gets that opportunity.
So I guess what I'm feeling is humble. And thankful. Thankful that I have my child here with me, that he's in no immediate danger of leaving us, and that I am able to meet his needs as they arise. Humbled by the thought of not being able to do those things. As a parent, the ultimate goal is to teach your child from your own experiences and ready them for life on their own. I plan on doing just that with both of my boys, but in the process I am learning more than I am teaching. From both kids. If people would open their eyes and see what these situations have to offer, the world would be a better place.
I suppose I she find something productive to do with my time instead of wallowing in a place I don't need to be. Step number one in caring for your children (or any loved one, for that matter) is to take care of yourself. I forgot to end my blog the other day with our quote, but not today :)
"Life is not the way it's supposed to be, it is the way it is. It's how you cope with it that makes the difference."
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