Copyright Justin McMahan 2012 |
Well one year ago today, Eliana Joy McMahan came into the world. It has been a long year and its been just our immediate family going through most of this journey. A lot of friendships/relationships that we have had in the past have kind of fallen to the side. To be honest I don't blame anyone because until you are put into a situation like this it is hard to understand the challenges that come. There have been a lot of what-ifs, along with triumphs. Eliana doesn't walk on her own yet, but she is progressing well. We had our hopes up that she would start walking by her first birthday, but every child with SB is different.
I love my Elly but to be honest, I have been so consumed with what was going on the past year that I have often neglected to take care of myself. Now that we have made it through the first year, which I believe is the hardest, I feel like I can be more at ease. Of course there is always that nagging feeling in the back of my mind that something can go wrong, things can change. But I praise God that we haven't had to have any shunt revisions in the past year or any other surgeries for that matter. She is able to pull herself up with the help of a stationary object (i.e. a couch, chair, or large toy), and so far we haven't experienced any developmental delays, which is another reason to thank God. We continue to participate in a research study with the University of Michigan and I do believe that it has been beneficial to Eliana's motor skill development.
It's been a long road. Quite a few trips to the emergancy, lots of appointments, and tons of at home visits but we made it. I know that our journey living with Spina Bifida, will have it's ups and downs but it is important for me as a mother to realize that her life isn't over. There is nothing that she can not do. The saying "Disability doesn't mean inability," stays with me everyday. Elly may not have as many challenges as some with Spina Bifida, but it has definitely changed our lives.
One thing that I have to say for parents who have a child with Spina Bifida or any other Birth defect or special ability, do not suffer in silence, get some help. That is a saying that can apply to many situations everyday life, but it is important to talk to someone. I said it before and I will say it again, you need a support system. Family is okay, but when you speak with someone who has been in your shoes, or is in a similar situation it can lessen the burden. You are not in their alone, so get connected.
I know a lot of the words in this post are redundant but I am just so thankful that we have made it through this year.
Najeema