Sunday, 11 August 2013

Sometimes

Mumsnet have recently launched a new awareness-raising campaign: This Is My Child. The aim of the campaign is to support the parents of children with additional needs, and to inform others by busting unhelpful myths about special needs. 

People sometimes wonder what it would be like to have a child with additional needs.  It is something that fills many an expectant parent with horror and fear. Why else put ourselves through the numerous prenatal tests. It is up there with random car accidents, cancer, bankruptcy and prison as one of life's blows that no one wants dealt.

Well we were dealt it. Many people were.

I'd be lying to you if I said it was all fine and dandy. It is not. But sometimes it is. Because it is life. Like happiness, it has its ebbs and flows determined often by external factors.

So what is it like to be have a child with special needs? 

Let me try and tell you......


Sometimes, I feel like Dr Jekyll.
Other times, I feel like Dr Hyde.

Sometimes, I wish I could turn back the clock.
Other times, I  wouldn't change a thing.


Sometimes, I wonder if we'll cope. Whether this will rip this family unit apart.
Other times, I know it has made us stronger as a team.

Sometimes, I panic about his future.
Other times, I love that he makes us live in the here and now.

Sometimes, I despair of the glacial development.
Other times, I cheer at the minute achievements, all the more wonderful for being hard won.

Sometimes, I get jealous and angry of the families with the 'perfect' children. Do they know how lucky they are?
Other times, I know we are the lucky ones too. 

Sometimes, I lament. Shake my fist. Pray for miracles.
Other times, I am accepting. Life chugs on. 

Sometimes, I get sad about his relationship with his siblings. How there is just three years between him and his sister but it might as well be ten. How he should be joining in with the role-plays, the chasing and the shared jokes.
Other times, I see their bond is special, unique. There is so much they can do together. They are all teaching each other about life.

Sometimes, I am begrudging of the hard work, the hours of therapy, can't find the patience to deal with the feeding problems.
Other times, I roll my sleeves up, get stuck in, it's just another task on the job load of being a parent.

Sometimes, I can't be bothered with the constant fights for education, equipment and help.
Other times, I am grateful for all the support, the medical staff that listen, the therapists that encourage.

Sometimes, I hate this new world of motability, physiotherapy, brain rehabilitation programmes, sensory diets, special educational statements, special needs nurseries and support groups galore.
Other times, I love this new normal, feel blessed with great new friends, delight in the facebook forum dialogue littered with shared moans and laughs aplenty.


Sometimes, I look at Gabe's little body and think why won't you grow? Why are you the size of a ten month old when you are coming up to three years? Why are you so weak? Why don't you work properly? 
Other times, I marvel at its perfection. How it has kept him going through some of the worse illnesses, how it has not let him down. I delight in its ability to heal itself. The miracle of holes closing in hearts and brains developing despite no nutrition.

Sometimes, I feel traumatised by all that we have been through. To wait on tests for horrible life-limiting diseases such as cystic fibrosis. muscular dystrophy, leukodystrophy, congenital disorders of glysocation, diGeorge and worse, rarer and rarer, harder and harder.
Other times, I feel elation that thus far all negative. That by ruling them out means not a second more spent dwelling on their possibility.


Sometimes, the negatives are glaring and scary. He may never know an independent life, may never walk or run, and he may never be able to find the words to effectively communicate with the world. He will be constantly under medical surveillance for historical ailments and more health issues to be come. He remains high risk for regression and his transition to adulthood is not guaranteed. 
Other times, the positives bring great hope and joy. His consultants are optimistic, say he is doing well. His health is improving, he is getting stronger. The small, simple things he couldn't do yesterday, he can do today. Like sit in a swing, stand alone, get up on all fours and say "let's go." 

Sometimes, I look at Gabe and think why him; why us? Why did we become the parents of a child with additional needs?
Other times, I thank my lucky stars that we were given this precious gift. How great this lottery win of a child that has changed us so much. 


But.....

Sometimes, he is a child with special needs.
Always, he is just Gabriel. My child. My boy. And I love him. We all love him.




Our Gabriel







7 comments:

  1. I have just started reading your blog and I feel so lucky that my family have no big problems like this. Working with special needs young people (not so special as Gabriel) I appreciate how lucky I am everyday. Keep strong our thoughts are with you

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  2. Thank you. What a great job you do.

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  3. I feel your pain, I feel your joy. It is a very weird road to walk, lots of highs and lows. I find myself hating when people complain about their 'perfect children' moaning and wanting them to shut up! If my boy ever talks I never want to tell him to shut up. Sending you hugs xx

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    1. Thanks Jane. It is indeed a strange old road. Hugs back at you xx

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  4. You speak the truth and most of your comments were my feelings,too. I can so relate to this. I feel your pain and your joy because I have had this pain and this joy. BTW, when you say shudder...my daughter was diagnosed with essential tremors that have never gone away and she is 33 yrs old now. She has learned to adapt nicely, but her hands, arms, head tremble almost all the time. Is that the same thing that you described? Not that it matters, I just don't come across very many parents who have a child like mine. Anyway, just wanted to let you know that I found you on Love That Max (my post was #49 this week) and am so glad I did. Do you have a FB page? If so, please let me know and I'll go and LIKE it. I love supporting my fellow bloggers. Thanks again for writing so honestly. You probably spoke for many parents with kids who have additional (special) needs. My heart goes out to you.

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    1. Hi Linda. Just added a facebook thing to the page. Just looked at your lovely blog too. I meant a shudder of fear. I think I can learn a thing or two from your experiences though.

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  5. Sometimes... I guess it is all about the moment. Sometimes I wish... Sometimes I wish my present wasn't this, my future wan't so unknown, and my child would have a normal, perfect life. Sometimes, I love my present, think my future will be ok, and my child is always perfect.
    Lovely post, sums up life with a Special Child perfectly.

    Got here through #BlogLoveDay

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