Somehow I had gone from healthy( ish) pregnancy to " have you noticed your son has some unusual features?" Followed by a list of said features and then, "we think your son has an extremely severe genetic disorder".
The weeks that followed involved genetic tests, metabolic tests, MRI, ultrasounds, x rays, pretty much everything under the sun. All in an attempt to diagnose him. There was no disguising the fact that Drs didn't expect Nate to be with us long. I struggled. From the endorphin rush of his birth and the immediate bond I felt I was faced suddenly with a floppy non responsive little boy with an unknown life expectancy. Part of me wanted to hold a little of myself back as protection.
Don't bond. Step back
Irrational thoughts plagued my brain. I was stunned, shocked, and frozen. How did this happen? What did I do wrong? How could I cope with such a severely disabled child and love him completely just to lose him? The voice of reason was my husband. He was so clearly focused on getting Nate home. We knew we had to become "experts" on Nate and all his needs. We took over his cares in hospital with the aim of bringing him home. This was the game changer for me. I had to do these things for Nate. I stopped my wobble and strengthened my bond with my beautiful boy. I thought short term. About doing what we could for Nate. I didn't think about the future or what his eventual needs could be. Or even whether or not we could cope. We dealt with things day by day, even as the list of "unusual features" became longer and longer. I swear every Monday morning his Paed had noticed something new.
This whole blog has been about our journey as a family. I won't go back over what happened. I try not to think of it unless it's as a means to support other people. I'd love to be able to say, " look what he was like back then and now he's fine/fixed/having treatment", but that's not going to happen. He is complex, he is profoundly disabled, but bloody hell his smile lights up my day.
I wish that before having Nate i had had the pleasure of knowing or working with adults or children with a profound disablility. That would have helped I think, even though every situation is different. If I could have seen joy upon accessing an activity, or where personality was shining through, that would have helped by giving me an insight into what I could possibly expect in a positive way.
Fear is of the unknown. Without building acceptance of difference through contact we fail to teach our children to appreciate the value of life. Just because someone's life is on a very different path doesn't make their journey any less valuable.
Phrases like " ah well I don't mind if it's a boy or girl as long as it's healthy" grate on me. You will mind will you? What on earth does that even mean. The truth is you will love your child no matter what even if you child isn't healthy. It shouldn't be a deal breaker. You don't get to return it if it's faulty after all.
Where I do think things could be improved for parents and children is with regard to that gap between leaving hospital after birth and being able to access services like portage. You might ( will) find your lives upside down with appointments and home visits, but until ( or if) you can access portage nothing focuses on the learning development of your child or understanding your child until they start school. I remember sat amongst a floor strewn with baby toys, (none of which Nate could play with) thinking well what can I do with him? Luckily we had a good portage led group and portage worker ( after a long wait on a list).
I am aware of my rambling. But I am honestly working towards a point. And it's these top ten things I'd wish I'd known 5 years ago.
1- You will love and fight for this child. End of.
2- Drs aren't always right. Question. Query. Challenge.
3- there is no shame in asking for help. Don't put off requesting assessments for respite until you are on your knees. Everything takes time. And don't feel guilty. Just don't.
4- it's not a competition. Avoid " my child is more disabled than yours" scenarios in support groups in real life and online. Your child may not have health needs but behaviorally may have you on the edge.
5- support groups. Find them. They differ area to area depending on funding available. You will make friends.
6- Don't be afraid to block and report any nastiness. Just because someone has a child with a disability or additional need doesn't mean they are a nice person. Don't put up with any crap.
7- there are a huge number of charities who will fund equipment, therapy, holidays and household stuff. Utilize them. Chances are you are working less and stoney broke.
8- accept when "standard" furniture and supplies are no longer sufficient. I cried when we got our SN pushchair and bed, and then bath. I seem to cry a lot... Never mind. Anyway they are life changing. Don't struggle on to prove a point or make things more "normal".
9- equipment. You will adapt. Seriously.
10- access services to support any siblings. Young carers, sibs days at hospices, even just helping them to understand their sibling.
And Nate's birthday? Well he's having a bowling party with his pals tomorrow. He's been to his sisters football presentation tonight with a dark disco afterwards- flashing lights, strobe lighting etc, I suspect Nate thought that it was his party 😳 oops.
No comments:
Post a Comment