My kids are now 5 years old. My 5 year old daughter was diagnosed with cerebral palsy at about 18 months of age...3 1/2 years ago. In those 3 1/2 years there have been tears but more than that, there has been a focus to help my daughter any way I could. Therefore, the drive outweighed, and more times than not. overcame the tears and weariness. I felt and appeared strong. I was focused. I was capable. I was ready for anything.
What has happened over the past month...........
The tears come more readily and I often have to fight them off in public.
It takes me longer to make phone calls to find specialists, therapists, doctors, etc.
I don't all friends back.
I don't want to help with sit-ups and bridges...her many exercises.
I don't feel strong. I just feel tired. I feel weary. I don't want to smile through it all. I want to scream "my daughter has a disability and I don't know what to do anymore."
What is going to happen?
It will all come back...the drive, the focus, the answers. I know...I hope. But for now...I'll just get by and ask my Father for a lot of help.
11 comments:
You have every right to feel the way you are feeling!! That does not make you a bad person. Sometime there is just to much to handle and you just want out. You need to step back and look at the kids that love you so dear. You will get back the drive and the focus, sometimes you just need to get off track to see what you need to focus on. If you need to ask for help then do so!! No one can do what you are doing alone. It doesn't make you less of a person if you ask for help. I'm sorry that you are going through this and wish there was something I could do. I will keep you in my thoughts, in hopes that you will find your way. :O)
I've followed your story through the years and just wanted to say that this post really resonated with me. Most of the time I feel like I have it relatively together; then, suddenly, the darkness descends for a while. I feel exhausted, beaten, angry, helpless, frustrated, and did I mention exhausted?
I do know that sooner rather than later the light returns. Until then, remember it's okay to take a break for a while. To cry. To feel as you do. To not feel like taking on the world.
Please know you're not alone in what you are going through ...
Tara
mother to Jonah (6, spastic triplegia), Alexandra (6) and Eliot (4 1/2)
Hi! Somehow I cam across your blog, and I must say, Grace is a sweetie. My daughter is undiagnosed and we use CP for insurance purposes. I think she has Rett Syndrome but the long and short of it is that she is pretty involved.
I hope you are able to relax just a little bit. Take a step back and just enjoy her. Life is so short. We all do the best we can, we are human. Grace will show you the way.
www.bluemorningglory.blogspot.com
Ditto on your status. I'm right there with you! I've decided we don't have to be strong ALL the time and I've shed a few tears recently and stressed a lot.
Thanks for the update. I love hearing about your little ones. You are doing such a great job and like you said on my blog, "CP sucks".
Girl, I could have written this post.
Hugs~
It's a rough road.
And sometimes you have to take a moment to regroup in whatever way you need to.
Tammy and Parker
www.prayingforparker.com
Sending you big hugs. Grieving how our children should be is never done and it seems to rear at the oddest times.
Your honesty is insightful and makes others know we are not alone on our dark days.
There are days I hate prematurity and what it has robbed our children of.
You are a great Mom and Grace is so lucky to have you by her side.
Big hugs.
hi!
i´m Atenas from Mexico, I've been following your blog for weeks now, I'm almost done reading it ...
First, your children are beautiful! and very bad mood but there are days go by fast!
Ale is my baby, has four years and has just one year with cerebral palsy, he was a normal kid, sometimes I have so much despair that I feel terrible! he is not progress!
I loved your post of hate!
I feel like this all the time. All. The. Time. And when it does, I decide that I'm doing too much, that it's time to take a step back and enjoy my child--cancel an appointment. I really believe these moment are steps on the way to acceptance. We take a little time, get to know our child where they are right now, and I hope, appreciate that this is an OK place and if we push on, we do it because we want to--not because we can't accept our child just the way they are.
I don't have anything to offer that will ease your pain, exhaustion, uncertainty and sadness. I just wanted you to know how much reading about your courage and Grace's journey helped me tonight. Thank you for sharing the joys and the heartache, the victories and the exhaustion so honestly.
My little girl was diagnosed with CP recently and her sisters will be evaluated next month. I fear that the other 2 will be diagnosed with CP too. My triplet girls are 15 months (13 adjusted)
Hey, I know this is an old post, but I don't get "out" much. :) Wow, it is great to know I'm not alone. Sometimes I look back and think "what have I been doing for the past couple of months?" It feels like nothing. How can that be? I have triplets. I used to change a diaper every 10 minutes and hold a bottle every hour for an hour..... I've come to realize we live in a world of two totally different paces. There's regular life pace with Trip and Georgia. I have a hard time keeping up with them. And then there is Ashley time. She takes so much more time to do things. It is difficult for me to be on Ashley time and yet, that is where I am a good portion of the day. Rush and then be patient for Ashley.
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