Baby Steps...

When a child is diagnosed with something like Cerebral Palsy, the road ahead is so very long. Now the steps of processing this diagnosis were as follows for me, but they could obviously be different for others dealing with the same situation.


*First comes devastation. Why? Because your life will never be as you "planned", it will never be normal, and your child will not get to lead the life that you had dreamed for them.

*Second comes anger, because you can't control what is happening to your child and WHY IN THE WORLD IS IT HAPPENING TO YOU?....it's a horribly, dreadful feeling that can spiral into depression if one is not careful.

*Third comes guilt. What could I have done differently for a different outcome? What did I do wrong? When in reality, you didn't do anything wrong. This one took me the longest to process and some days, I still revert back to this feeling of guilt. I think this is a hard one for all mothers in general of disabled children, whether it be Cerebral Palsy or anything else.

*Forth comes hopelessness. What am I supposed to do now? I have this child that may never be able to lead a normal life and will most likely depend on me for the rest of my life. I have no idea how I am going to provide the things that this child needs.

*Fifth comes strength. I can DO this! He needs me and I am going to do whatever it takes to give him a wonderful, fulfilling life! You find strength from sources you never thought you would.


I suppose I am going through the second step again. I am just so frustrated and angry that we live in a world filled with so many resources, yet I cannot give my child what he needs. The government says "You make too much, so we're not going to help you." I would love to meet the bureaucrats who decided they know what the hell they're talking about when it comes to what someone like me can afford on our salary for our disabled child and STILL have money left to eat, make payments on our cars, and every single other thing on our plate. Those "people" would definitely be getting a BIG piece of my mind...



- Joy

This thing called LIFE.

I had taken a hiatus from posting for few days because of some things going on with my husband's health. We discovered that the right side of his heart is enlarged, so we're in the process of trying to find out why. But, we had to travel over 2 hours to the hospital doing his testing, so we got a little off schedule with everything around here.

One of Ben's little quirks is that he HATES change. So when we tried to get him to go to sleep in the hotel room, he put up a huge fight. Once we actually got him to sleep, he didn't stay that way. He woke up several times during the night. Needless to say, 6 A.M. came way too soon!

Once things get calmed down around here, I'll be able to start posting more regularly. I mean, it'll never get totally calmed down, but the normal chaos will be a nice change.




- Joy : )

The past few days..

I know I have been absent from the blog for a few days, but I promise I will write a good post for you soon! Benjamin's nurse from SoonerStart comes today and I'm hoping for a productive meeting. : ) I will be asking more about TEFRA and what exactly I'm supposed to do with it.

I'll be back later!


- Joy

Yesterday Ben had his visit with our physical therapist through SoonerStart. We are blessed to have such a wonderful PT; he's great with Ben! Since Ben has decided he's tired of just laying down and is rolling over everyday, we are now working on getting him to get up on his hands and knees. Small steps! : )

I don't have much else to report at the moment, just living day to day. I'm in the process of trying to get an Ergobaby carrier. It will take awhile to get Ben a stroller and I can only carry him so much during the day. So the carrier will be a welcome tool for this momma!

We are also looking into something called TEFRA, it helps families that make "too much" but have a child with a disability. Once I figure out more about how it works, I will write more about it!

I hope everyone is having a wonderful Wednesday!


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Super Sunday!

I think as a new "tradition", I will start writing about something super that happens on each of our Sundays. Something positive to start the week off with! : )

*We weren't sure we'd ever see the day that Ben rolled completely over. We stretched his legs and showed him the way to move his legs, but we still were unsure about the progress we were making. As you saw in the video below, he DID roll over! From back to front. Now that he figured that one out, he doesn't want to stop! We'll let him play in the floor and once playtime is over, he throws a fit. (I can feel those terrible two's coming on!)

Tonight, he rolled not only from back to belly several times. But he rolled from belly to back! AHH! : ) What a great feeling to know that you have helped your child achieve a goal we weren't sure would ever be achieved.*


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Braces for Ben

After finding out we do not qualify for Medicaid, DCP (Disabled Children's Program), and that his Social Security Disability payment has been cut off...I decided there is no sense in waiting to schedule appointments that he obviously needs. We will be taking him about an hour away to a place called HANGAR Orthopedics to have him fitted for braces to put on his feet.

He has beautiful, little baby feet but they just happen to bend severely outward so he's not able to bear weight on them right now. We are hoping that with the braces we can start working on standing. I will post more about them once I find out more. At this point I know he needs them to bear weight, but that's about it. I will also be finding out how much we will have to pay out of pocket. The easy part is getting him fitted, the hard part is paying for them...

I'll keep you updated as we go along this next part of our journey! : )

Milestones, Schmilestones

In our house, we don't usually measure things by milestone. We do physical therapy and hope for the best. But when something does happen, we go crazy! Here is a video of Ben rolling over this week. We couldn't be more happy...except maybe if he'd sleep in his own bed EVERY night. ; )

Welcome!

This is a work in progress, so bear with me! My goal is to raise awareness about what middle class families go through while raising a child with Cerebral Palsy. We are what I call the "forgotten class." Thank you for joining us on our journey! I will post when time allows, which I hope will be each day. :)


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