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The milestone race 

How many times do you remember another mother saying something like oh my child crawled at six months  and another saying mine did it earlier. 

Well when a disabled child is born many milestones will never be reached and many times a child passes the age of a milestone it’s another grief point. I think for the first two years of my disabled child’s life I was  grieving what they can not do and coming to terms with the the whole disability. Many times when  they are a baby they can look so normal and as a parent your in protector mode so you don’t want any doctor or therapist telling you what your child won’t do. Plus your still learning or researching this new medical world. 

I am lucky to have four children and three who can walk and talk and eat and go to the toilet and play and entertain themselves. 

Imagine though if this sick/disabled child was your only child and you were attending parent groups or play groups with mothers of children who have no disability and all you hear is the milestone competition. 

Mothers and fathers need to be supporting each other not racing against each other. 

Many friends of mine who have children with special needs celebrate simple victories with me about my daughter as I do there child. We cheer along things as simple has a child lifting there head up for five seconds or tolerating a leg stretch. Or a sleep that has gone more than an hour. A week of no seizures. A week or day of no hospital  visits. Leaving the house without a meltdown.  And we get just as shattered at the loss of things like a child who gets told they are no longer safe to swallow so no more feeds all tube feeds. These things I say are simple to a normal able child but to a special needs child’s family they are huge. 
The list can go on. 

This kind of support and love has come due to heart break and loss.
We have all been a milestone racer in some way. But be mindful please of the person next to you, we never know the battle they are facing daily. 

I remember one lady in hospital when A was in for Seziures and we were in a four bed room. The lady opposite us had a little girl who was about ten months  old. I could see that this child had a few issues leading to a disability but I kept quiet. I heard doctors tell this lady her child has a brain condition/disabilty similar to A but not as huge. This woman was angry and in disbelief and yelled and pointed to my daughter and said I don’t want a child like that. 
Hurtful yes but it’s ok 
she was hurting and hurting bad. 
She went on and on about how she went to uni and was qualified to be a lawyer and this is not in her life plan to have a child like this. She said what do I do I don’t want to take her home. 

I was gutted at hearing this but held my head high and understood this was possibly just shock. 

A week later whilst still in hospital a man (the dad) came to me and said he wanted to apologise for his wife’s comments and that she had left him and taken the normal child and he was going to be full time dad to this gorgeous little child. 
We talked a while and I said I was so sorry as it’s the hardest thing to take in finding out your child will never do this and that but I also said that once you grieve what will not be, all of a sudden you realise just how lucky you are and the love and pure love that comes from such a child will make you whole again. 
I said in years to come you will see how this was the best thing ever to happen in your life. 
I gave him contacts for therapist and good doctors and said I’m sure we will see you around. 

I couldn’t say everything I wanted to because it is a grief process you need to go through to get to the top of the sadness and then start to get happy again. 

It is a hard thing to explain but my point to him was that he will be ok and it’s not the end of the world, it’s the beginning of a beautiful love like no other .

So let’s celebrate what our friends children are doing to and not compare our children. All kids develop at a different pace anyway.     

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I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble

4 Comments

  1. tracey carle says

    Beautiful Jo. Such an inspiration. I love seeing pics of your wee family & hearing how you are all doing. Our family has so much similiarities. Yous are always in my thoughts. Its tough being mummy nurse carer & all these other things too. But its the most rewarding & loving in the world. Xxxxx

    Liked by 1 person

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