Disclaimer: This post is a selfish pity party. I will complain, I will gripe, I will vent. I simply need to let this all go so that I don't go crazy on myself. If you don't like whining, you might want to skip this post.
I am tired.
I don't even know what else to say anymore but that. I am simply tired. None of the things that I have to do as a special needs mom is especially hard, but when you add them all up, and throw in the monotony of it all, it just wears a person down after a number of years.
Anything is endurable for a season. You think to yourself, "I got this, it's only for X amount of time." But as I look into the future, I don't see relief. I see it getting harder. I see Brian and me getting older, and I see Clayton's needs increasing. And I get tired all over again.
I am tired of something as simple as jumping in the car and running to the store being an ordeal. Yes, I get jealous of the other 90% of the population who can trust their kids to get themselves into the car, buckle up, and not have to worry about loading and unloading a chair.
I am tired of looking at everything through "wheelchair eyes." I am tired of seeing stairs, obstacles, and going "around." I am tired of the separation from the rest of the group that a wheelchair forces in many situations. (And if I'm tired of it, how annoyed Clayton must be?!)
I am SICK and tired of therapy. Our entire schedule revolves around therapy, which is imperative to Clayton's well-being. BUT DANG. IT. GETS. OLD. It interrupts our school day, field trips, and a normal "homeschool" routine. Not to mention the drama that we deal with at the clinic. UGH.
I am tired of lifting. My shoulder hurts. My back hurts. I am tired of planning my steps and the logistics of things by how many times I'm going to have to lift Clayton.
I am tired of planning the logistics of shielding Clayton's bathroom issues from other people (mainly kids). The older he gets, the harder it is, and I flat out don't know how we'll be able to do it when he's 20. And there's only a select number of people who I trust to help me with that issue, and I hate to even ask most of them.
I am tired of watching other couples around us plan things for themselves, since childcare is relatively simple for them. I am tired of watching the clock if I do drop Clayton off anywhere because I know the person that does keep him can't do the above mentioned lifting and/or bathroom things for very long.
I am tired of feeling guilty for feeling tired! The moment I start getting on one of these pity parties, I immediately remind myself that life without these problems would mean life without Clayton. And I can't even bear that thought!!! I just wish I could shake this funk that I am in! I so wish God would show me something that reminds me that He is working it out. My mind knows He is, but my heart simply isn't feeling it right now.
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About Me
- AshleyS
- I am a SAHM. I am a Christian, passionate about my family--also a homeschooler, a photographer, and a scrapbooker when I can find the free time!
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5 comments:
I can empathise with you - our foster child is now 11 years old and weighs 52kg - and even though we have a hoist in the bedroom, one in the bathroom and one for the spa, there are still times I have to lift her on my own (ie, when at the hospital for tests, etc). Add to that the fact that I turn 70 next year, and there are days when all I want to do is to curl up in bed and sleep. But I know that at some point, in the not too distant future, we will have to hand her care over to someone else because of the toll it is taking on me, and that is breaking my heart.
Are you able to get some in-home help and support? So that, for example, you could go to the store on your own, without having all that planning and lifting to do? Are you eligible for funding for hoists for the lifting? I don't know how the funding works in America - here in Australia it is possible to get funding, although it does take a long time for the process. I think it is important to get things like the hoist, a wheelchair vehicle, etc, before you REALLY can't manage, as by that time not only is your body tired, but your mind is, too. We do have some in home support, and it gives me some time off - when I am not ON DUTY 24/7.
I hope that this tiredness will pass, and you will once again be able to find happiness and fulfilment in what you do. Perhaps you need a check up for yourself? I know I always leave my own health issues too long, and then they become bigger and bigger. Thinking of you. Ruby.
Clayton is very blessed to have
a mother like you.
My daughter is seven and is also in a wheelchair with multiple special needs. I understand all your tiredness -- including the guilt associated with this, since we are both grateful to have our special needs children. But still... I understand. I don't think everyone does, as evidenced by comments I hear, like, "Well, I guess you don't know any differently..." Umm. Yes, I do! Take it a day at a time, and hang in there!
You speak my mind. My son is 3 now and was diagnosed with Duchenne Muscular Dystrophy. He is able to walk, but his muscles are weak and in coming years he will loose his ability to walk,,breathe by himself, and many more such things until DMD robs him of his life. I always worry about what future will hold for him and us. And your blog resonates with my feelings and concerns, of how we will be able to handle his care when he gets older. I guess we just live one day at a time and not think about tomorrow. As someone once said "Que Sera Que Sera, whatever will be, will be. The future is not ours to see, Que Sera Que Sera"
Hey there. I have not visited your blog in a while. I have much the same routine as you do. I also homeschool my Emma, age 10, spastic quad CP. I have been struggling with all of the same things that you have written, so well, here. I soooooo understand. I also get frustrated that others around me don't seem to understand this. Anyway, I am just so glad you wrote this because it helped me, and I wish I could offer some helpful words to you. I just keep telling myself. I can do all things through Christ Jesus. It is all I know to say... God bless you. You are such a wonderful mother. Clayton is blessed/
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