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| Photo taken my Jenny Gildea Photography. |
When he was inside my belly - I knew he was going to be a pretty special little guy. Sounds really weird, but I really wanted this second child and when you think the only way your going to have a second child is to utilize modern science and you know its not "in the budget" you pray. You pray to God and hope He hears your request. I was at Church one Saturday evening with my parents. I sat their quietly asking God before Mass to give me a sign that just maybe I could have a second child. I really didn't want my little girl to grow up without a sibling. Then I heard one of the readings, it was about Sarah, I believe, but don't quote me on this because I am far from a scholar on Religion and Scriptures from either the Old or New Testament. Anyway Sarah I believe it was, couldn't have children and had prayed and prayed for years. She then was told that a year from this moment you will have a son. This particular scripture story was "told" smack dab in the middle of the summer in 2007. So of course, I took this as my sign and held it dearly to my heart. Sure as you know it, I come to find out I'm pregnant in November 2007 and due smack dab in the middle of the summer 2008, approximately a year after the scripture reading was read about Sarah. When we went into the ultrasound at about 15 weeks, the technician wanted to know if we were interested in knowing the sex of the baby. So my husband and I were like, sure. I knew in my heart it was a boy. Just knew it because of this reading. Sure as you know it, he was sporting the family jewels! My baby was indeed a boy!
I also knew that my son might have issues after being born. Its something I never shared with anyone before, but I knew in my heart that something wasn't quite right. I never went through the prenatal testing to find out if my child had genetic issues, etc. I knew from the ultrasounds that his limbs were a bit shorter than his torso and not always measuring where they needed to. I had a lot of ultrasounds because I was high risk because of my age and miscarriages. Anyway, I suspected that my son was going to be born with down syndrome or at least a version of it. I'm one of those "idiots" that googles everything and I was convinced that there was something wrong. Again, nothing I shared with anyone just sort of kept it to myself.
When my son was born, he looked fine, he acted fine - but for some reason I felt this need to secure him. I knew instinctively that I needed to keep a watchful eye over him. It also didn't help when the resident doctor told me that they were thinking of keeping him one more day, she wanted the head doctor to take a look at him. She said his breathing sounded "interesting" to her and she wanted a second opinion. The head doctor released him, yet I felt that there was something not quite right but couldn't put my finger on it.
Then he was home for a week or so and I noticed he wasn't eating very well and slept a lot. And when I say a lot - I mean the child was rarely awake. This worried me, so I emailed the pediatrician and she said that it was normal and to enjoy the "rest" it won't last long. Turns out my child had severe reflux and he stopped eating because it hurt to eat. He would take 2 oz of formula at a time and didn't want me to nurse him. My child slept so much because he was conserving energy since he was malnourished. I was the proverbial "pain in the ass mom". I stopped caring about what doctors thought of me. I just kept going until a doctor listened to what I had to say. I am lucky that I have a fabulous sister who is a fabulous medical professional. She listened to me and then consulted with her colleagues and they felt my child needed to be seen by a G/I specialist. We did, and it was the best thing I ever did for my child.
His G/I specialist is the one that opened "pandoras medical box" for my son. I know, some of you are like, WHAT? Really your happy that a doctor opened this huge "box"? As a parent with a child with "non-descript, rare, and unique medical issues - you pretty much want to kiss the ground of a doctor that can give you answers to nagging questions. I know so many parents of children who have medical issues and still don't have clear answers. We are lucky to have answers! When you know something isn't quite right, and you come across some doctors that want you to think you are "crazy" you feel like you won the lottery - and trust me, I've come across a few of these doctors and I wonder why they chose to be doctors with the bedside manners they have. Being smart isn't just a requirement, you need to listen and have compassion to be a super good doctor!
Anyway, this "box" my son carriers around is getting quite full. He has Noonan Syndrome - a rare genetic disorder that most doctors have never heard about, a heart condition, asthma, gluten allergy, feeding issue, astigmatism and near sighted eyes, and today we find out he has a "non-descript" platelet function disorder. A blood disorder that we just sort have to plug along with and figure out what types of things will cause him to bleed or bruise and what types of things won't. He's like a walking science experiment.
I pondered a lot "why" my son has to have these issues and "why" God gave him to me and my husband. Then I think back, well .... I like medical science. I made a career switch to work in the biomedical/biotechnology industry - maybe this was why I studied what I did. Maybe I wasn't suppose to use my education to make "money" but to make sure another human being has what he needs to get through life like any other person. I think, maybe I was suppose to study physiology and my hematology course so that I could be "knowledgeable" enough to ask the right questions or be able to learn how to research medical issues on my own to bring to the table for discussion.
I've spent many a day wondering why I got my Masters of Engineering with a concentration in Biomedical - when I haven't really used my education. Then it just dawned on me today after visiting my son's hematologist that it was because I needed to have this background for my son. God gave me my son because he knew I would make sure he had the best possible medical care and that I was a knowledgeable enough to get him to the right people. God gave me these talents and they aren't being wasted.
My son is everything defined in "non-descript, rare and unique" but he's also a normal little boy who likes to tell me silly made up "knock knock jokes". He's that cutest little boy I've ever seen - a phrase I hear often after we walk by. Its a phrase that I hold close to my heart!
Thank you God for giving me one of the sweetest presents - my son, Donovan!
Such a wonderful epiphany. It's cool how things seem to work out in the end.
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