I'm having a rough week with Becca. She has been shaking more this week. She has been a lot weaker this week. I put her in her gait trainer and she just goes limp and gets mad. But I do it every day anyway. I set the timer and we muddle through until at least ten minutes. I know it's good for her and I know that she'll get back to being ok with it and maybe even start enjoying it again. I'm sure it's hard for her to get back into the swing of things after being back from vacation.
I can't help but cry out of frustration and discouragement when Becca has a hard week like this. I'm exhausted. I think of all the things Becca misses out on. More than that I think of all the things I miss out on (mostly with not being able to communicate with her). Things are just so hard for her! A couple weeks ago I gave Katie a bath in the real bath for the first time and she just sat there. I didn't have to hold her up or anything and she wasn't scared and shaky. I was in awe! Is this what most kids do? I have so many of these experiences as Katie has learned things so easily. Mostly I cry because I'm discouraged. I'm not able to take care for Becca as well as I think she deserves. And man, it's just discouraging to work so hard at skills just to lose all our progress in one day. Makes you feel like it's pointless to work on things! But well, life goes on. I love sweet Becca more than I can say. I would do anything for her.
On a more positive note, Becca did quite well on our trip out to Colorado. She had a wonderful time with her Grandma, Grandpa and aunts and uncle. She loves her family so much. She really loves people in general, but it does seem like she favors those who she's most comfortable with. Lately sleeping has been harder for Becca. Well, sleeping hasn't been so bad once she gets there. It's falling asleep that is really hard for her sometimes. At times it can take her more than 3 hours to fall asleep. One day in Colorado Becca decided she didn't want to take a nap. She assured me that she didn't need a nap and that she would be a perfect angel for the rest of the day (I'm sure that's what she was saying with her little mischievous smile). Here is what she was like in the evening right before we were supposed to go out to dinner...
She sure makes me laugh.
Becca loves watching other kids play and it was fun for her to watch her sister and cousin get into trouble. She loves her sister and cousin!
Becca had a wonderful Christmas! She was healthy and happy. I couldn't have asked for a better Christmas present. I hope you all had a wonderful holiday season!
This blog is for and about our little girl, Becca. Becca was born with low muscle tone and has been consistently behind in her development. She's now six years old and doesn't walk or talk or feed herself. In 2010 Becca was diagnosed with Rett Syndrome, a neurological disorder caused by a genetic mutation.
I can't imagine what you are dealing with every day. It is not a surprise you find some discouraging days but I know both you and Brian are good at seeing discouraging times without giving in to discouragement. There is always the blessings of the Spirit and the power of faith to fight off those little things the 'other guy' throws at us. Mom and I are so blessed to have you to watch over our little granddaughter. Her life will be well blessed by having you for parents. We love all four of you.
ReplyDeleteI know how you feel when the discouraging days with Rett Syndrome come along - I wish they didn't. Well.....to be honest I wish Rett Syndrome did not exsist! I hate that our daughters have to deal with it that is for sure. Becca is such a cutie and is blessed to be part of such a loving family! I did want to ask to see if anyone had recommeded trying melatonin with Becca to help her fall asleep? It is a natural product that does wonders for our girls. It comes in liquid and pill form.
ReplyDeletehttp://rettgirl.org/2009/08/melatonin/
I second the melatonin! Hi, Im Erica, mom to Avery (3 1/2) who was just diagnosed with Rett in November. Found your blog thru google alerts. Becca looks like such a love. Avery does the shaky arms and torso sometimes when awakened suddenly. She also breathes like you explain Becca's breathing while asleep and we are also wondering if there are seizures at night.
ReplyDeleteoh and I hate rett syndrome too.
This post made me want to cry too. I can't imagine what it would be like to watch your child struggle with basic skills of life.
ReplyDeleteOn a different note, in some ways Becca isn't all that different from a "normal" two-three year old. In some ways the frustration you feel when it sometimes seems like nothing you try to teach them is sinking in--two steps forward one step back--isn't going to get any better when Katie reaches that age. They will just be a different set of skills. I can totally relate to your frustrations in that way, and also in always feeling like you're coming up short as a mom...well maybe not always, but I think that's something all moms struggle with. And if not all moms at least it's comforting to know not just me. =)
In case you're wondering, I think I've commented before (can't remember if this blog or your family blog), Brian was a good friend of mine in high school.