I’ve learnt a lot in my 10 years of being a special needs mummy. In no particular order here are my top 10 things I’ve learnt!
1 . The world is not set up for disabled people. The access everywhere we go is still not ready for a child with severe physical difficulties. Changing places toilets are still far and few between and this makes going out incredibly hard.
2. People are rude! People judge very easily and don’t take into account the whole story. I’m not saying everyone is rude but there are so many people that still stare when we go out with Ethan. There are people who won’t adjust events or allow the time Ethan needs to process information.
3. You will make a whole new group of friends. You will make new amazing friends who you wouldn’t have met if you weren’t on this journey. They will totally get how you’re feeling because they are going through it too.
4. I am stronger than I think. The last 10 years have taught me so much about myself. How I face challenges, how I relieve stress, how much I understand medical jargon and most of all how strong I can be, even when times get tough.
5. Hospices are wonderful places full of wonderful people, not scary places. We have been going to our local hospice for nearly 9 years now. I was scared at first, but as soon as I set foot inside, our whole journey made sense. The people who care for us when we are there are the kindest people I know. Providing support and help beyond their means just helps get us through this hard journey.
6. I’ve become a medical expert in my sons’ disorder. Learning new words like tachia cardiac, orthopaedic and resus are words that I use a lot. There are many other words that we have to use and sometimes I amaze myself with how much medical jargon I understand! Watching medical programs, I am now able to explain to my husband what’s happening in the whole program.
7. Sleep is a thing of the past! I know when you become a parent the first year is always the hardest and you never get as much sleep as you did before you had children. Having a child with special needs is a whole different ball game. Late nights, early mornings, all night no sleep parties, seizures through the night providing disturbed nights and the worry and stress of times of illness or hospital stays make for a whole lot of sleepless nights!
8. Planning a day out becomes a military operation. Allowing for emergencies with rescue meds, providing spare changes of clothes, allowing for tube feeds and food for routine times, aces to change pads and daily meds are just a short list of things we need to think of before we go out for the day.
9. Owning a laminator is perfectly normal! All resources I make for Ethan are beautifully laminated with my special machine! Honestly ask around I’m in a special club here!
10. Last but not least, Ethan has amazed me every single day for the last 10 years. His strength and determination have shown the world around us that he is incredible no matter what is thrown at him. His body has been through more than most will face in a lifetime. Every day with him is a miracle and for that I am truly grateful.