I often wonder if I will ever stop thinking about what Becca’s life would be like if she didn’t have Rett Syndrome. Sometimes I look in her eyes and see so much personality locked up in her little body and it truly breaks my heart. I know she has a wonderful sense of humor just like her Dad. And I know she’s smart, just like her dad. She seems to understand more about life than any of us do.
Anyway, I was looking through old pictures and videos earlier today and was, once again, surprised at how Becca has changed through time. It’s always a bittersweet experience for me. I’m not sure why I do this when I just end up crying…I guess I can’t explain it, it’s just something I like to do. Though I had that familiar ache in my heart and a lump in my throat as I looked through our many pictures, I came to a realization. When Becca was little I was always waiting. Waiting for her to master the next skill, waiting for her to get stronger muscles, waiting for her to catch up to other kids, and waiting to figure out what was wrong. I was always wishing time would fly by so things would get better (if that makes any sense). I didn’t stop to enjoy what a sweet baby she was. I wish I could go back and do it over. If only I knew that she had mastered skills that she would later lose.
But I also came to the realization that I don’t do that anymore. With Becca’s diagnosis came sadness but a whole lot of peace. I just enjoy her now. I’m not wishing time away now that I know. And I try to focus on reality rather than the life the she might have had. I am just so grateful for her and that she chose to come to earth even though she knew it would be hard. I’m so grateful that she came to our family because we truly do need each other. I am so grateful for the sweet spirit she brings into our family for all she has taught us and will continue to teach us in the years to come. I think I might always feel inadequate when it comes to raising her, but I know I will be given the strength necessary to do so. Becca was blessed with a Daddy that understand her better than any other person. He knows how to cheer her up or provide for her at times when I don’t. God definitely knew what He was doing when He sent sweet Becca to us.
Wow, I came to update on Becca’s life and then out came all of that. I guess I don’t feel like I have too much to report. Becca has been sick a lot this winter already. Each time she’s sick I find myself wishing that she could tell me what’s bothering her. It’s sure hard to take care of a sick kid that can’t communicate. But she’s been blessed to overcome the bugs that came her way. She thinks the holidays are exhausting…
But she has also had a lot of joy this 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.
We also feel very blessed that someone as sweet but with such difficulties as Becca has been placed in a family who will take good care of her and bless her life. I think it is so touching that Katie is always looking for Becca and wants to be sure she is alright.
ReplyDeleteYou and Brian are the perfect couple for a little angel like Becca. You work hard and don't get too discouraged with her struggles but love her and find ways to make her happy. It is an inspiration for us to watch you as you serve and prepare this little soul for the life she will have in eternity.
We love you all (especially you, Paula, because your struggle is constant through the day) and hope we can help where possible. Be patient and all will work for your good.
Love all four of you very much.
I second what Dad said, you two are amazing and your girls are beautiful and fabulous. We love and pray for you all (not that we have any special sway, but we do it anyway...guess we must adore the four of you).
ReplyDeleteI linked to this blog from a blog of a friend and was really touched by your post. I don't know your background or where your family lives, but I work for a nonprofit intensive physical therapy clinic in Provo, UT called Now I Can that treats kids just like Becca. I've seen incredible progress- we do three and four week intensive sessions and work with the patients for either the morning or the afternoon, and it's very effective. There are also a lot of scholarships available and they work hard not to turn any families away based on financial circumstances. If you're at all interested, check out the website: nowican.org. I know many other families have loved it and I thought I would share it with you!
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