Well, this post has been one that I have slowly, and with a bit of trepidation been waiting to write. Over a month ago, almost 2 months ago now, we have had some big developments with Jacey. She has been diagnosed with a rare type of Cerebral Palsy. The white organic brain disease is the specific name for it but classified as CP. This does not diminish in any way our little lady's fiestyness, or want to do things, she just is not able to do them the way other kids can or as soon as other kids can. We don't really know what the future holds for our tiny girl. We love Jacey like crazy people and I hope that we do the best that we can for her. However, there is always the little tremor of fear, dread, remorse, grief and guilt that takes hold of a small piece of your mind. I always have questions about the future running through my mind: will she walk, will she speak and understand, will she date/marry/have kids and will she ever really understand how much we love her and want the best for her. I don't in any way want this to be a sob session but using this as a bit of my journal, I want to express the things I worry and think about. For people who know me, I am a pretty laid back person with a fairly upbeat personality. This is something that I work daily to continue, I don't want to be the crybaby mom or the my life is so hard mom or the down in the dumps all the time mom. So I am sorry if you catch me on an off day and I complain or I spew a few tears. This is all fairly new for our family and we are working through all the appointments, paperwork and questions from other people. So bear with us and don't worry that my pants and shirt don't match!! =) hehe
On a more positive note, Jacey is doing amazing. She is doing Physio and Occupational Therapy every 2 weeks. We now have a special walker in our home for her to work with, and little tiny leg braces (AFO's) that she wears everyday for a few hours. We also have a special chair that goes into her high chair and her stroller to help control her body movement and a tubby chair...WAHOO for her to be able to play in the tubby longer than 5 mins without mom breaking her back cause the girl is getting chunky! =) Jacey is so happy and pleasant all the time and we are incredibly grateful for her disposition cause it makes all the yucky stuff that much easier. We are grateful for the gospel knowledge we have of perfected bodies and our family being together forever. It is just a new time in our lives that we are getting used to. And also for the record...all the people constantly asking about more babies...As I told my sis...When I wake up each day and DON'T want to poke myself in the eye...then there will be another little person coming along! We'll keep you posted, until then it is all the Bird Girl! - Alyson
3 comments:
Alyson,
You wrote this beautifully. She is so blessed to have a mom and dad who LOVE her and will do what is best for their little Bird Girl! You are a wonderful mom.
I am glad you now know what it is so you can know what you can do to help her. I can tell that you are a wonderfully devoted mom. Hugs to your family.
Jocelyn
I think she couldn't have come to better parents. You are a great mom and remember that there is no fault in sharing your emotions and concerns for your daughter. Every mom has to vent sometimes and I don't ever see it as complaining. I hope the best for her. I don't know her well but just from the things Jenny has told me about her she is an absolute angel! And a cutie too!!
You need to be able to vent and express your concerns and frustrations. It's part of being a parent. We all have different obstacles as parents and sometimes we just need to get it out. Your friends will always be there and care and want to know how to help get you through things.
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