Help me to get thru this living night mare!!

Jayde - posted on 05/04/2009 ( 3 moms have responded )

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Hi my name is Jayde and i am a new mum,

i need help with getting through these tough times with my little one. i had a normal pregnancy and my due date came and went i was 12 days over due but then he decided to come out... he was born fine. i had a normal delievery and had no soghns of evrything was fine... my labour was 15 hours and i gave birth on a wednesday! the next day i saw a twitch in his right hand said something it was ignored, saw it again the next day so i mentioned again so they investigated and it was fits. did a scan of his head and found a mass.... was rushed to they royal children's for an MRI and because he was de-satting... he went into brain surgery when he was only 3 days old... came home after a month in hosp!! It was found he had a stroke from a clot that passed thru a whole in his heart and killed his left brain!! so it was all removed, the left side that is... he now has physio and can turn his head to the right or move his right hand can see out of the right eye and doesnt hear well either... how did you cope thru all the physio? How was the kids at school? Did your son have to use a splint because i do for mine!! And how do you keep your relationship up? i have none that understands or can help i need to know what to expect!! help me please

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Sonya - posted on 07/06/2009

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Jayde,
I too had a normal pregnancy, however, my son's life took a turn for the worse at his delivery. The physician on call didn't know how to deal with a child with shoulder dystocia, and instead of doing a c-section, he pulled on my son's head with suction and forceps for 30 minutes before he decided to call in someone who knew what they were doing.
By the time that happened, Matthew's heart had stopped and he wasn't breathing. We went through a full resuscitation and then spent 3 weeks on a ventilator. I didn't get to see him for the first 4 days of his life.
Needless to say, when I did see him, I was in shock.
Four years later, I was diagnosed with PTSD.
Matthew was diagnosed with Cerebral Palsy, GERD, he is g-tube fed, is non verbal and is in a wheelchair, and he is the love of my life.

I know things are tough at the beginning. The first thing I would do is talk to your family physician about how you are feeling. Make sure that there is no residual depression or PTSD. And if there is, get it treated. I can tell you that I was treated with Effexor for 6 years and some pretty intense therapy with a social worker to work out my feelings of inadequacy and loss, and now, I'm good to go. No more drugs, no more therapy, no more feeling sorry for myself or feeling like this was my fault in some way or another.

Matthew is 10 now. He's in a regular school, but in a special ed class. The kids are great. I find that if you're open to answering questions, and you answer them in a way that kids can understand, then they're very accepting. I make a point of smiling at people who stare, and sometimes offer an explanation. It makes for a nicer world when people understand, instead of judge. I find people are quite receptive to talking with us. I think the fear of the unknown is what causes people to react poorly to children with disabilities.

Matthew used a hand splint for several years, to help stretch out his thumbs. He still abducts them, however he is much better at opening and grasping as needed.
He's had so many tubes in his ears and so many infections, that he no longer has ear drum membranes. Because he's non verbal, we don't know if he can still hear us or not. I do know that he responds when I talk, so I figure he must hear something. :)

In terms of relationship, I have to say that Jeff and I have been through a lot in the last 10 years. There have been times when I just wanted to walk away and leave him and Matthew. But we said "for better or for worse", and we figure this is just the "for worse" part. We were married 4 years when Matthew was born, and had dated for 4 years prior to that. It's a challenge to keep the spark, that's for sure. There's nothing that's less romantic than changing diapers on a 10 year old or wiping his bum!
In the first 5 years, we found it was important that we have one weekend a month alone. We have a local program that offered parental respite, and we took them up on it every chance they gave us.
Now that Matthew's older, we find that he's less work in terms of direct care. He'll play by himself and keep himself amused for longer periods.
With the use of his Tech Talk 9, we are finding that he is able to now push the button (with a lot of effort in targeting), and tell us if he wants to do something else.

Things do get easier as they get older. The only thing that doesn't get easier is lifting and transferring. Matthew is now 102 lbs and almost 5' tall, so it's a challenge for me to get him in and out of his wheelchair, bed and bath.

I know it doesn't seem like things will get better, but they will. You will become more adept at dealing with your son's issues and that will help build your confidence. You will be a different person than you envisioned when you were pregnant. You will be a different kind of mom, but you will also be a stronger mom.
Look at the progress your son has made. Look at the little things and treasure them. And most of all, keep a journal of your feelings, your thoughts and things that have happened. When you are feeling bad, go back and read those thoughts. You will see that things are not as bad as they seem and you will be able to see the amazing feats that your son has accomplished, even when the doctors say it's impossible.
If you ever want to chat, feel free to IM me, or email me through FB.

Keep your chin up. :) We're rooting for you.

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Carol - posted on 07/08/2009

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Hi Jayde; I also agree that it was really hard at first, trying to make sense of everything, then all the pt, ot and speech therapies. Our major issue was when she got into school and the school only wanted to recongize the issues they felt were important. But we stayed strong, didn't let them bully us.

One thing our family doctor told us when Crystal was diagnosed that he said was a very important factor in her well being as well as ours was LAUGH, and LAUGH everyday. Find humor in the simplest things. Don't surround yourself with the negative, find positive things, and appreciate every small step that happens. The little goals are the mightiest. Crystal is now 24 and doing well, we still have days that she deals with various issues, but honestly we wouldn't change anything. We are stronger for that things we can't change. If you need to talk, please don't hesitate to IM me, or write me her on FB-Blessings-Carol

Kate - posted on 05/18/2009

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Hi Jayde

Welcome to the unpredictable world of motherhood. Sorry to hear about your pain and struggle, but happy to hear you're both ok. And well done you for noticing the twitch and for keeping at it until they took notice. That is a lot to have to deal with, for anyone and especially as it is your first and only. We could sit and talk about this for hours,but for now to answer your questions.

First the physio...it's hard at first, as you've noticed. Just having to go consistently can be a struggle and getting to know the physios who are complete strangers at first. After 9 years of going through it with my son, I can tell you with certainty that it DOES get easier. My son has been fortunate enough to only have had 3 different physios throughout his life, which has enabled us both to form strong bonds with ours. That has made it easier for us both, for him to trust them and their advice and for me to come to rely on them as friends. Looking back, I honestly don't know where i would have been without physio, they have taught me so much... about myself, my strengths/weeknesses...about his condition, the differences between helping and hampering...and about our possible future. If you are fortunate enough to be able to avail of a physio service then you should definately do it and suffer through at the start, because the rewards will be endless...for you both.

School next...lol, you're already a typical mum and worrying years in advance. Time will tell on that one, only worry and think about what you CAN change for now and the rest can wait.

Yes my son wears a ankle and foot orthotic/splint and will probaby continue to do so for the forseeable future. he has right sided Cerebral Palsy and battles with decreased muscle tone combined with spasticity on his right side. He is 9 now and he seems to have made peace with the way things are. That wasn't always the case of course,it takes time, patience, understanding and love.

As for the relationship, is that with a significant other or with your son?

Take care of yourself and remember not only to be kind and patient towards your son, but to yourself also. And dont be shy, or think it's weak, to ask for help or time out! We're only human after all...

Kate

Feel free to pm me anytime, I was also alone and had no-one who undserstood..so I understand lol.

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