Very long post. But I hope this answers some of your questions
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Wheelchair Accessible Van for Quamaree
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Wheelchair Accessible Van for Quamaree
Quamaree is 11 and will be 12 in September. So I’ve been asked his whole life ‘What happened to him?’ ‘Did you know when you were pregnant?’ But I’ve been asked more than a few times more recently.. and it may be due to people seeing this Fundraiser… Quamaree was born with Microcephaly and NO I didn’t know when I was pregnant with him. My OB & his ultrasound techs missed it in his ultrasound. Which always never made sense to me… because he is missing most of his brain. So what exactly did they measure? Especially during his anatomy ultrasound?
Would it have made a difference if I had known? Yes! Yes it would have! At that time Dad & I were young and had a 4 year old. And it would have prepared us a little more for what life was about to be like having a medically complex child. Done a little research. Have specialists lined up. We would have been able to set aside more money for me to be out of work longer than just maternity leave.
Would we have chose to terminate the pregnancy? -Absolutely not-
Quamaree was meant to be ours and we were meant to be His ❤️ Dad was out of state at college playing basketball like he always wanted to do. His Mom (my mother in law) and me were brought into a tiny room after Quamaree was born where I was told to sign a DNR… something I didn’t even have a clue about. I didn’t even know what those letters stood for. That Dr told me Quamaree would never be able to eat, never have a personality, and not even make it through the night… and if they resuscitate him it would I do more harm than good.
I literally couldn’t even believe what I was hearing! I spaced out and didn’t even hear anything else that was said. I wouldn’t sign it. I told him he is still my son and they need to do whatever it takes to keep my baby alive!
They stopped feeding Quamaree. I called Winnie Palmer in Orlando and told them what was happening. They came to pick him up by ambulance. I couldn’t go given the circumstances. So I left against medical advice and drove to Orlando. We stayed there for a long time and were told so much information day in and day out. But what stuck out to me the most was Dr Alexander looked me in my eyes and told me …
IM GOING TO SAVE YOUR BABY!
That was all I needed to hear!
I was so lost feeling. Even though I was surrounded by family and friends. I just couldn’t understand what was happening or why it was happening. Fast forward we have seen many many specialist and Dr’s his whole life and still don’t have an actual answer to ‘what happened to him’ he was Born this way and God knew what he was doing when He chose us to be his family. Is our life easy? No. But it’s our ‘normal’ and I couldn’t imagine it any other way now. He really is our golden boy and all his daily needs… diaper changes, venting his belly, setting up his feeding machine.. feeding him via gtube, medications, wretching, medical equipment, making sure that he is moved around many times so he can be involved and not in the same position for too long, learning his Eye Gaze to communicate, Therapy sessions (PT,OT,Speech) and now school… are all second nature to us even though it’s overwhelming and intimidating to an outsider.
Really our biggest problem we face is…. When we leave the house and want to stop by a store… even just a gas station we have to get all the kids out including Quamaree. Where I have to get lift his wheelchair out of my trunk alone (most of the time because dad is at work) put the wheels on it (that’s how it is able to fit in my trunk) position it for him. Get him out of his car seat into his wheelchair… go in the gas station get a snack for our drive to practices after school.. to go back out and get him out of his wheelchair into his car seat.. and lift the wheelchair back up take the wheels off and wedge it back in the trunk. I know it sounds crazy. But this is something many people don’t think about as a struggle.. but for our family it’s one of our biggest!
Really our biggest problem we face is…. When we leave the house and want to stop by a store… even just a gas station we have to get all the kids out including Quamaree. Where I have to get lift his wheelchair out of my trunk alone (most of the time because dad is at work) put the wheels on it (that’s how it is able to fit in my trunk) position it for him. Get him out of his car seat into his wheelchair… go in the gas station get a snack for our drive to practices after school.. to go back out and get him out of his wheelchair into his car seat.. and lift the wheelchair back up take the wheels off and wedge it back in the trunk. I know it sounds crazy. But this is something many people don’t think about as a struggle.. but for our family it’s one of our biggest!
This is why it is so important to us to be able to have a wheelchair accessible van. It legit is LIFE CHANGING for our family.
And we’ve put our pride aside and asked for help from friends and family as-well as people we don’t even know. No amount is too small. Even $5. Because if everyone donated $5 we would reach our goal so much faster than people not donating because they are nervous it’s not enough. So please don’t feel that way!! We appreciate all of you!
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