I wanted to share this because so many people have asked me about what Cerebral Palsy is exactly and how it affects Macy.

Cerebral Palsy can affect children in many ways. It can affect them in any way from severe, being drawn up (crippled) and confined to a wheelchair, unable to care for themselves at all - to mild cases where they simply lose muscle coordination or a little movement.

It is a neurological condition, a form of brain damage that affects the portion of the brain that controls muscles, motor skills & coordination and can also cause mental challenges from severe to mild. Macy started out having grandma seizures. This is what began the problems and diagnosis. She had been sick due to smoke inhalation from a housefire. We found she had developed RSV. Apparently the fever from RSV had brought on the seizure. The very first time she had one, I thought we had lost her. She started convulsing and then when it stopped, she turned blue, her eyes were rolled into the back of her head, she wasn't breathing and was just limp. I thought that we had lost her! So much so that looking at her eyes on the way to the ER, I remember thinking to myself, if she is alive, if I softly touch her eyeball, she will react. Anyone would react to the touching of their eyeball surely and don't get me wrong, I didn't literally poke her in the eye, just barely touched it. I know it was a stupid thought at the time but I just wanted a reaction. Anything to tell me she was still here. I know this may sound so bad and may make me look like a horrible mother but think of how I was freaking out at that moment. I just needed something to show me she was alive. She didn't flinch and my heart sank.

We made it to the ER counter and miraculously, she just came back as if nothing had happened. Got her color back, speaking. She was a little disoriented and weak, but alive! I remember telling the lady at the window that she just came back from the dead. A God sent miracle! Keep in mind I had never had any experiences with seizures and had no idea what had happened. Just thought she had left me. I always believed in the Lord but as ashamed as I am to say it, I was skeptical of miracles of coming back from the dead. Although after they found out what had happened, they told me that this was common during seizures, I stil can't help but believe that she was almost gone from me. She wasn't breathing, no life at all. I still strongly believe that it was nothing short of a miracle and thank God every moment for it!

On top of this, she continued to have them up until we were invited to a holiness church for her to be prayed for. We were not holiness or even attended church at all, just can say I have always loved the lord. They prayed for her and you may not believe me, but Macy has never had a bad seizure since. Her neurologist cannot even explain it! She has small ones, but nothing that we can't handle or that severely affects her. Thankfully though she has the seizures, she has not been affected mentally such as learning disabilities or mentally challenged. Only physically.

This may sound bad to someone without knowledge of cerebral palsy but thankfully my daughter was luckier than most. She is severely crippled but it mostly only affects her hips, legs and feet. It also affected the part of the brain that controls her balance & motor coordination, so she falls constantly without someone holding her or a walker or bracing. She must have bracing to stand, walk or sometimes to sit but thankfully she is not bound to a wheelchair at the moment. Only braces and a walker. They have told me that this may become be a future concern but I do not intend to confiine her to a chair as long as she is still able to walk with assistance. She often has to be carried because she becomes weak and that is when she falls a lot even with her braces and walker.

It also affects growth. She is turning seven years old and is the size of a 3/4 year old as it also affects growth. If you see my photo album, the children with her are ony five and she is seven and much smaller than them. Only weighs 42 lbs but she is not malnourished, just her weight is fine to fit her frame. She is just growing out of 3/4 toddler & girls.
I know this may seem strange given that Macy's problems sounds so bad, but we were blessed. If you have ever seen
chidren in wheelchairs that their bodies are drawn up and have to have their heads stabilized and be strapped to the chair because they can't hold themselves up, this is usually CP. It can be so bad that you will see many drooling because they are unable to control the muscles in the mouth. God bless these children!

So as you can see, Macy is very blessed not to be as bad as most. Unfortunatly, there is also something else wrong with her muscles, but it has not been able to be diagnosed as of yet. See CP is not progressive and for some reason, her crippling is progressing so they believe it is something else causing the progression. She may become worse as time goes on and any of the above problems are possible but she is blessed and we are hopeful that she will continue to be blessed.

I am sorry for rattling on but CP is an issue very close to me and I carry on when someone asks about it. She doesn't feel sorry for herself and most children like her doesn't either. They have a wonderful outlook on life and have huge hearts. These children are just unbelievably strong! They do not let this get them down or feel sorry for themselves. Macy is a little trooper. Some would disagree with people making comments or asking questions but we welcome them. Some people can be very cruel, but most people are just interested in knowing about it and the world needs to be aware of what it is, and what affects it has. Kids sometimes can make comments and many times they are not very nice but most of it comes from being unaware of what it is.

Macy feels the same way. She is asked often and happily explains. This gives her a chance to teach them and helps to meet and make new friends. When Macy was in school, the little boy (Ty) in the photo with her called her a baby because she walked like a baby. She started explaining her condition just as an adult would, That her legs didn't work like his. They are now good friends and when in school, Ty became her helper lol Many other children would not play with Macy because she couldn't run, slide, climb etc. and was slow and this did bother her extremely but I explained to her that these children just didn't understand her condition and that it wasn't their fault. Knowledge makes a world of difference.

Well, I will go for now and hope this explains things so people understand better. This was on a personal level but I will research a bit on CP and post another blog with information on the medical and scientific level tonight. Little bit needs me right now so I must go. Please though, consider getting involved with causes that relate to chidren with these problems. Take it from me and Macy, the simplest act of kindness, word of encouragement or become active, will make such a huge difference in these lives! God bless you and thank you for taking the time to get to know about this.