Warning: This is an honest post. We said long ago we would post the highs and lows –this is a low.
Rhema still continues with working on getting her legs back under her each week. It’s really slow going and to be honest, I’m having difficulty adjusting to the new BIGGER braces too. I just do not have the confidence level yet of getting her into these, much less getting her standing in them. Rhema will fuss quite a bit as I strap her in and she will kick her legs in protest; all this makes for a difficult task. As each week goes by I know I’ve got to “get a grip” on this irrational avoidance but it’s been a tough. I’m honestly just not adjusting well. It’s pretty bad when the mom is having a rougher time than the kid; oh how I struggle with the guilt off all this. I’ve not had a struggle like this since her first pair of AFOs when she was just an infant. It’s been three weeks and I’m still struggling and having to say that I’ve not “stood her up” at home daily. Rhema pulls-to-a-stand all the time at home, but it’s different than being in these braces and “standing.” Ugh! Why can I not just get past this?
This week I’m telling myself that it’s a new week. A NEW week. A new week in which I can get a handle on this irrational avoidance and just figure this out. It did not help that last week at PT when Rhema did stand that both her little heels were bright, angry red when we pulled her out of her KAFOS. I’m thinking that deep down I’m so guarded against her having another nasty pressure sore that I’m feeling paralyzed. This is the only thing that makes sense to me. Well that and it’s really, really hard to get her all strapped in and then strapped into the stander and it all work right. It’s so complicated and I’m so worried that I will cause her pain or a sore from not getting everything adjusted right. Ugh! Oh, my shoulders are tense just typing this and I’m holding my breath. Yup, I’ve got to get a handle on this “fear.”
So, tomorrow we have PT and once again I’m going to tell them that Rhema has not really “stood” in all her gear. But as I feel this shame, I’m also reminding myself that today is new day…this week is a new week. I can and will get this going in the right direction again. This too shall pass and momma will get-a-grip.
Those of you who pray, I would appreciate your prayers as I work on adjusting to this “new normal”…. I was just getting used to our old “new normal” and now it’s all changed. Thus is life and THUS is the life of a momma who has a child with special needs.