Going through this pandemic right now has really begun to open my eyes to how isolating life really is for someone like me who has a child with special needs and a type of special needs that is almost non-existent in the world. Lots of people have good intentions about being friends or caring but when a situation such as this occurs you see that a lot of those are "good intentions" but not actions. When I care about someone or know they are going through something that could be very hard on them I will text them, call them, email them, or message them just to ask how they are or to let them know I was thinking about them and that I'm here if they just need to talk. That doesn't occur for those like me and I have heard this from others without much family to help support them and find some "friends" don't value us the way we tend to value them. Sometimes we are even used as if we are a charity case because we have a special needs child and because of that we are somehow "in need" of them to befriend us so they can tell their friends what they are doing. This way they can receive a form of "pat on the back" for selflessly doing some kind of good deed. Someone actually emailed me when we had a falling out that they used my daughter and I in this way and she said it with pride. I keep that message even to this day and it keeps me from ever letting someone close enough to my daughter again to do something so hateful and self-promoting ever again.
Mosaic Down Syndrome is a very rare form of Down Syndrome that occurs to about 7% of the world population today. When my daughter, Madison, was born in the early 2000's it was about 3-4%. I had worked with special needs in my teens when I would spend VBS (Vacation Bible School) with my grandparents each summer. In my early 20's I was a coordinator for the Special Olympics Fort Worth division working on opening ceremonies. Being 24 years old and told before my first child is a full day old by the pediatrician that she believed she had Down Syndrome was not something I ever expected. Knowing a lot about the condition through working with many kids with DS and going to school with a focus on medicine I knew that it was not known to have a first child this young with this syndrome. For 2 weeks I just knew the doctor was wrong and that the blood test was going to come back negative. My beautiful little girl had no protruding tongue, no slant up of the eyes (other than the slight slant that I have and her younger sister), and no crease in the palm of the hands.
When she was 2 weeks old I had a cardiologist tell me that my child had a dangerous heart condition that was going to kill her if she did not have open-heart surgery. She needed to grow before having it so as to give her a higher chance of survival (30% to 47%) and that if she should cry before this surgery it could stop her heart and kill her. What?! How do I tell an infant not to cry?! Thankfully I was blessed with a child who only cried one time during this 3 month period of fear. She started turning blue in my arms because she had a gas bubble that she couldn't pass and I thought I was going to lose my child while she lay in my arms before I could find a way to rid her of something so small as a gas bubble. To be honest I cannot say I might not have tried to take my own life if she would have died in my arms that day. The same day I was told she had this heart condition that would kill her I came home distraught and while feeding her a bottle I got the call that the test came back positive and she had Down Syndrome. Needless to say it was one of the hardest days of my whole life.
Having just one of these conditions is enough to make life hard but when you are given both it can make life feel as if you are always walking through a mine field that can cause an explosion to occur at any moment without warning. My beautiful girl has defied so many odds and people still tend to be shocked when they find out that she has DS because you can't tell most of the time. She has undergone 4 heart surgeries (3mths, 9mths, and two 3mths apart at the age of 11) and you would never had known by the energy she has always had that she could have died so many times. Those with Mosaicism are higher socially and intellectually than typical Downs Syndrome, as well as displaying little to no physical features of Down Syndrome. This is why we just knew she couldn't have had it those first two weeks of her life because she didn't have any features physically. You might think you see it in the pictures I post but if you saw her standing next to her father you would see that she is a complete carbon copy of him and not the syndrome. She talks very well, has no thickening of the neck, she loves books, and she's pretty good at math. These are not what people expect from this syndrome but for those with Mosaicism it is typical. The reason is because the usual distribution of the extra-chromosome is not added along the whole gene. Due to this it allows these higher functioning abilities that no one knows about or pays attention to until the child displays it and then individuals are taken aback and unable to understand how that's possible.
I hope you will return for more as it won't always be deep information but also funny as well as all kinds of emotions. Very soap opera like. There are also groups that I hope you will feel comfortable with joining in and sharing your lives together with me. I want others like myself that have their own angels with special needs to feel as though they have others they can talk freely without concern of judgement. I am a very open and outspoken person and some would say quite "politically incorrect". I don't roll with the majority thought. I have my own thoughts, beliefs, and everything about me is said with my family, friends, country, and faith in mind. I don't judge others on having a beliefs different from mine because, 1: It's not a person's place to judge others 2: I expect the same respect to be given to me in turn 3: Nobody can grow in any way in life without being open to listening differences.
So welcome everyone and I hope to be a blog you look forward to returning to.
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