My second post today...
March is brain injury awareness month but before I get to that I would like to introduce Jessica's brand new niece Adeline Mae. She is perfect in everyway and we are so in love with her.
I have been trying to raise awareness on both the survivor and the caregiver...... please know that I am definitely not complaining just raising awareness.
I know before Jessica got hurt I never even gave a second thought as to what a special needs mom goes through each morning just to get out the door...
I can only share my experience but I am sure most are similar . I wake up 2.5 -3 hours before we need to leave. Everything I do I have to do double I put on my makeup and her makeup I do both of our hair, brush both of our teeth and get us both dressed..
Jessica has what I call Mommy radar as soon as my feet hit the floor she instantly wakes up and is ready to go for the day. So Day. So I quickly get myself ready and then I start the process of getting her ready. She's very picky about what she wears and loves to accessorize. Jessica absolutely loves shoes and because of muscle tone and tightening some shoes are impossible to get on her but I give it my best shot. Some mornings it takes me 5 minutes to get her boots on her feet it's quite a workout LOL. I do it because she deserves to look the best that she can. I believe the better you look the better you feel and just because she's in a wheelchair does not mean she shouldn't dress how she wants to. So when us moms tend to look a little frumpy don't judge just know we put all of our effort into getting our child ready that morning.
We get through each day the best we can. Once evening rolls around there is no sitting and relaxing since just like our morning routine we also have to do double in our evening routine.
I / we do this without complaining. I do this because I love Jessica and I remind myself that if I was in her shoes I would want my caregiver to treat me the way they would want to be treated. With that being said it does not mean that we do not need breaks every now and again. I personally love nothing more then when on the rare occasion somebody else gets her ready for the day and or for bed in the evening.
Some think that taking care of a special needs child / adult is the same as taken care of small children I am here to say I raised three children and it is not the same. For one they are much bigger. It will also be for life not just for a few years. And because of their size an inability to do much for themselves it is much more difficult to find people to take of our special needs children. Therefore we do not get many breaks. Not enough breaks leads to caregiver burnout which is not good for anyone. As I talked about in my previous post we will always welcome a break.
Remember if you are connected to somebody who is a caregiver they will not ask for help. If you already know how to confidently and safely take care of their child you should set some time's up to help them out. If you would like to help but just don't feel confident enough to do it please talk to them let them know what you would like to do and I'm sure they would be more than happy to help you become a confident and independent caregiver for their child.
Here is a short update on Jessica she is doing a bit better with her conversation skills and her singing is really improving her new favorite song is this house is not for sale by Bon Jovi we listen to that multiple times everyday lol. Sadly she is declining physically. I feel like that when she makes progress in one area we lose it and another and I think this is because the brain can only work on so many things at the same time. We are still holding out for a miracle. Praying for a complete miracle.
If you read this all the way until the end please have a wonderful weekend and always make time for all of your family members because tomorrow is never promised.