DAILY LIVING & MOBILITY

Life as a Special Needs Mum is Simple, Right?

Rare Disease & Syndrome

Rebecca Shayler

Doing Everything I can to help my daughter with special needs

When you find out you're going to be a parent you know it’s going to have it’s ups and downs but what about when things don’t go quite as planned?

I can still remember sitting on the toilet waiting for the lines to appear for our fourth child. I was nervous as it wasn’t expected. However, I know with our previous children adding one more would be fine. It would be hard but we would cope. We started excitedly planning and buying all the baby equipment.   

However, at 27 weeks I still hadn’t felt a kick and so I went to the hospital where I was reassured everything was okay. This happened frequently throughout my pregnancy. I started to have a feeling that this pregnancy wasn’t going to end with a healthy baby. My baby was born and didn’t move at all for 72 hours! She slept 23 hours a day up until 3 months. Our local hospital did initial tests, but said they had never experienced symptoms like my daughter's. By 4 months old she was under Great Ormond Street who performed even more in-depth tests and investigations- nothing came back conclusive.   

My daughter was diagnosed with Hypotonia, random paralysis, her heart went into tachycardia frequently, her kidneys were failing along with other skeletal deformities. Instead of being exhausted from sleepless nights as my babies keep me awake, I’m exhausted from not knowing if my daughter has a normal life expectancy.    Instead of running around to different baby clubs, I’m running around to different appointments; physiotherapy, occupational therapy, hospital appointments and more. Instead of wanting to play with sensory equipment as it’s the new ‘in thing’ I do sensory activities to help develop my globally delayed child. I push and push for my daughter to achieve inch stones and have to do so many physio exercises just to get her to do things my other children just did without even trying.   

Being a parent is so exhausting and being a parent to a child who has a disability (especially the unknown rare disability) is mentally and physically exhausting, beyond all that I could possibly imagine. I knew my bundle of joy was going to be exhausting from the day that pregnancy test came back positive, but I never expected this- I will do everything humanly possible so my daughter has a life that is as easy as it can be for her.

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