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Thoughts

Some of my first thoughts were:

How severe will it be?
Is Ella going to be diplegic, hemiplegic, quadraplegic?
How will she cope?
How will we cope (both together and with Ella)?
What happens to her when we’re gone (not too soon hopefully!)

Some thoughts were purely selfish; we’re only human. Some thoughts were misdirected rage, looking for someone or something to blame etc., some were of despair.

As the time passes, it’s becoming easier.

I’m fine! … why am I moaning … I don’t have CP. I suppose it’s because we all want the best for our kids, and CP doesn’t fit in with that. Of course it doesn’t. But one thing resounds every time I look at the both of them:

As 26 weeker preemies, it’s a miracle they’re even here. 5 months of hell in NICU, with doctors telling you that your kids are unlikely to make it through the night is enough to put your personal angst well and truly in place!

Most of the thoughts you begin to realise are selfish ones, and it certainly starts to put other aspects of your life into perspective. It’s Ella who counts at the end of the day, and we owe it to her to do whatever we can to make her life as happy and enriched as we can.

Unfortunately, Ella was also classified as severely deaf along with her brother back in May. This made things even worse when I found out about her CP diagnosis. I will never forget the moment when I asked the following question at one of their review clinics:

“If Ella is deaf and she has CP, how will she be able to communicate?”. He simply replied, “The worst case scenario is that you’re looking at life long care in a wheelchair”.

He told it how it was, but it really was the worst case scenario, and the truth is, you just don’t know how it will pan out until they’re around 18 months+. Even then, it’s an unwritten book.

At the time, I went white, felt sick and the room consisting of my wife and 5 of the community help team went deathly silent. That’s the only way I can describe it. My wife asked another question and we moved on.

4 months on, Ella is now showing signs of recovering from her hearing loss, and she’s making great strides improving on many of the things she was unable to do. We only suspected CP when she was lagging behind Max in her developmental progression.

At the end of the day, she’s showing an overwhelming desire to overcome the problems that hinder her, and it’s this that we will help her strive to achieve.

Category: General Ramblings

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Comments (3)

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  1. Doug says:

    hi,

    My sister has a 2 year old who has cerebral palsy and lives in Kenya. I am tryning to find out how I can help her as I don’t know what to do. Can anyone recommend the best thing one can do? maybe buying something for caring for the todler and so on. The situation is so bad that the only food for the todley is porridge.
    thanks

  2. TABATHA says:

    hI MY NAME IS TABATHA I AM 26 YEARS OLD AN I LIVE WITH MILD CEREBRAL PALSY. I RECENTLY HAVE EXSPARIENCED MY FIRST REAL SIEZURES BUT I HAVE HAD ALL OTHER COMMON SYMPTOMS ALL MY LIFE. MY MOYHER NOTICE SOMETHING WAS WRONG WHEN I FIRST STATRTED TO LEARN TO WALK SO MINE WAS DIAGNOSED AT A VERY EARLY AGE AND I AM VERY LUCKY. TODAY IF I DIDINT TELL YOU I HAVE CEREBRAL PALSY AND YOU WERE NOT VERY AWARE OF THE SYMPTOMS OR EFFECTS YOU WOULDNT EVEN KNOW… THERE WAS THIS ONE DR. WHERE WE LIVED THAT MADE IT HIS MISSION THAT I HAVE A NORMAL LIFE. I HAD THE FORREST GUMP SHOES LOL, SEVERAL SERGURIES AND THE CAST WERE ENDLESS AND THE PLASTIC LEG BRACES… BUT TODAY AT 26 I HAVE A FEW PROBLEMS FROM TIME TOIME AND I LIVE WITH PAIN DAY TO DAY BUT THE LOOK ON MY CHILDRENS FACE WHEN WE PLAY TOGETHER IS WORTH EVERY MINUTE OF IT…

  3. TABATHA says:

    @Doug:
    IF YOU HAVE ANY QESTIONS FEEL FREE TO ASK IF U TELL ME HER SYMTOMS MAYBE I CAN HELP>

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