I met with the geneticist and genetic councilor today to discuss Carl and Tyler. It was interesting. I wanted to be a therapist of some form growing up and have always been interested in figuring out the "whys" of life. This profession is basically a mix of the two. They council people and try to make sense of medical puzzles. (Side-not: A friend of mine is a Marriage, Family, Therapist and I realize I wouldn't be a very good therapist because I am not a very good listener. She can sit and listen and not interrupt. I talk to much. I give suggestions or try to find answers too much. Bad Heidi. I am going to try to work on that skill. Add that to my New Years Resolutions).
As Danny and I assumed, it was a difficult autopsy due to the fact that Carl was most likely dead for a couple of days. All body parts, with the exception of his brain looked normal. Doctors assume his brain had a large arachnoid cyst. Interestingly, they said his facial anatomy was normal. Although I believe their expertise, his pallet, orbit and profile didn't look normal to us on the ultrasound or when he was born.
The chance of having another heart baby due to my sister with a left sided defect and Tyler are elevated a couple percentages. There is no obvious link between Tyler and Carl. What are the chances that someone has two kids with severe defects? RARE, however, not impossible.
They asked about our emotions. I tried to explain some of the heartache and emotional roller-coaster as well as the peace we now feel. I feel blessed for the spiritual knowledge, marital stability and our amazing support system I have. I truly feel blessed for my three children. They have helped mold our family into who we are.
He said that although I explained many emotions, I didn't talk about anger, one of the most common responses. Someone once told us it was OK to be angry. I remember discussing that with Danny and realizing that although we knew it was OK to be angry, neither of us had ever felt anger.
We never doubted that a loving and omnipotent God was over all who would provide us with the love, strength and courage to make it through. Not that is was always easy, but we never felt angry. How could I be angry at the children the Lord blesses us with or experiences we have in this life. Those are many of the experiences that draw me closer to Him. I now love my spouse and my children more fully. I think the absence of anger has been one of the tender mercies of the Lord. He has always helped us feel and realize our incredible blessings.
Danny and I really do have a marvelous life. Not a perfect life by any means, not a life with everything we could imagine, but a marvelous, happy and blessed life. We have a solid marriage, faith, amazing support system, a perfect condo, location to live, wonderful jobs, and have always been provided with what is best for us, what brings us the most happiness.
There is very little to ever complain about or be angry about when you are filled with a perspective and constant reminder of the great life you have. I do feel blessed for this perspective. I realize that it makes life much easier, fulfilling and enjoyable. I think this perspective is something that we should constantly seek after. It is a recipe for happiness and fulfillment. Danny taught me to not wait for tomorrow, but enjoy today.
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6 comments:
You guys are truly amazing!
Ah man, I am so humbled every time I read your blog. You are an angel Heidi. Truly.
Sounds like that is some good news. I'm glad that they think it is random. That must be somewhat reassuring. Love you guys so much.
Oh wow you guys are a really amazing family. I found your blog on the Heart Hero list. I always look at the HLHS babies, My sweet Kylie has HLHS, I am having a really hard night tonight, but came across your blog and you have given me such strength. Thank You so very much, you have such faith and are very strong.
I couldn't agree more. We have not ever felt anger either. These babies are sweet blessings from heaven and they are eternally ours.
Since Hope was our first born and given the serverity of her complex heart issues. . .we were told that we had a 50/50 chance of having another heart baby, even though we didn't know anyone on either side of our families having a heart child other than us.
In the end, Scott and I decided to leave that decision in our Heavenly Father's hands as we had always planned to have other children. I will never forget meeting with my OB/GYN a month after Hope's passing to see if my body had healed enough since my c-section had become infected after Hope's birth. He looked us both in the eyes and said "I know that your next baby will be healthy" WOW, that was the answer to the many the prayers I needed. In the end Nathan came within a year of Hope's passing and it was exactly what I needed. God knows what we can handle better than what we do. And I had to have faith that if we were blessed with another heart baby, we would be able to handle it too as I would never have given up the chance to have had Hope.(Hugs)
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