It's been two years since the diagnosis and I can honestly say that this is not how I pictured our life to be. From the moment we heard the diagnosis until some time after he was born, I envisioned my life to be full of surgeries, doctor's appointments, catheters, enemas, paralysis, therapists, procedures, sickness, severe developmental delays, hardship and all of the other worst case scenarios that the doctors were required to inform us about. And that is simply not the case.
Now, don't get me wrong - it hasn't been all puppies and sunshine. Jackson has had two surgeries both of which were in the first month of his life. We have our fair share of doctor's appointments, ultrasounds, x-rays and procedures. Jackson works with three therapists for a total of five visits a week. He is developmentally delayed. He doesn't walk, yet. There are days where I feel like I've failed as a parent. To see other children his age running around or speaking full sentences or just doing what a "normal" toddler does sometimes makes me feel inadequate. I spend more time arguing with the insurance company over billing than I ever used to. I do things like research the Early Intervention annual budget or what mobile stander has better reviews or how to make our home more wheelchair-accessible. These are things that I never thought I would have to do when I thought about raising a child. But in the grand scheme of things, we consider ourselves blessed. There are other children/families out there who are dealing with far worse be it either from Spina Bifida or something else.
Jackson is a healthy, 19 month old toddler with a laid-back personality. He's rarely sick. He sleeps through the night. He doesn't need to be cathed at this time. He hasn't had any issues with his shunt (knock on wood and praise the Lord!). He is a happy-go-lucky munchkin who has spoiled us completely. We have a wonderful support system of family, friends and medical professionals that help make the day-to-day things so much easier. We can't imagine doing this without all of you. :)
Jason and I have often spoke about how we were meant to have a child with special needs. Whether it is to help raise awareness about Spina Bifida, to show people that raising a child with special needs can be a blessing in disguise, to advocate for a better Early Intervention program, to fight the fight against insurance, the school system or any other program that should be helping children but are not performing to the best of their ability....the list goes on and on. But, no matter the reason God had, we will do our best to live up to the expectations.
So, while for me this used to be a day of mourning for me so to speak, it's not anymore. It's a day in addition to Jackson's birthday to remind me of what a blessing he is and how lucky we are to have him in our lives.
I mean really, how could you not love a face like this? ;)
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| Photo by Ten Feet Photo |
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