The next three months were a whirlwind of activity and appointments. I was sent to specialists and was seeing my regular OB doctor. I was traveling from Marquette, to Petoskey and back to home to Pickford on a regular basis. I even went to Traverse City at one point to meet up with another specialist. All these doctors kept telling me the same thing, "Yep, Cora was definitely going to be born with Down Syndrome."
At least they were calling her by name and not "the fetus" anymore.
The highlight of these visits were the ultrasounds. During the time that it took for the doctors to evaluate Cora's in-utero growth and weight gain, I was able to see my child thriving in her safe water filled nest. I could see her hair floating and marveled at how fantastic it looked. (I was hoping that hair was going to be red because my other children didn't have red hair.) It was during the ultrasounds that Cora wasn't a "thing" or "abnormal high risk" pregnancy. During these moments I was lost in watching my daughter develop and grow and move so freely. I could see her suck her thumb, wave her hands, kick her legs.....what I didn't see was the Down syndrome. I just saw Cora.
During one of the appointments to see Dr. Christiansen in Marquette,Mi. a pediatric cardiologist, it was discovered that Cora had a heart defect. I was told that this was common for babies with Down Syndrome. Common? You mean Cora was finally considered normal? Praise God... Wait!,,,, did you just say heart defect?!
Breathe Katrina, Breathe.
I traveled home from Marquette, Mi. in a fog. Everyone had been so adamant about the fact that this thing called Down syndrome was a "fluke". That I had done nothing to cause this to happen to Cora. That is just happens and there is no reasoning for it.
I listened, but deep down I still thought that it was my fault. After all, I was the one carrying the baby. I was the one growing her within me. I was responsible for her nourishment and safekeeping. How could it not be my fault? And now this heart problem...
I was moving through the stages of grief. I was talking with a Down syndrome group from Traverse City, Michigan. A woman named of Heidi told me that it was okay to grieve I wasn't having the Gerber baby or the ideal that society pictures a newborn as. I was depressed, angry,in denial and bargaining all at the same time. Hearing the news that my Cora was going to be born with Down syndrome and a heart condition that would most likely need surgery was just too much in that moment. Yet, when Heidi told me this.... When she gave me permission to grieve... I was relieved of a huge weight. I realized that I had been feeling guilty about being scared and sad that Cora wasn't going to be a Gerber baby. It was ok to grieve. It was ok. Wow, what a great gift she had just given me.
I was dealing with all this and a man who would alter from being supportive to ranting about how he wasn't the father and that he wanted DNA testing to prove he was the father. He would make comments about how he didn't want to have a retarded baby because everyone would make fun of him. To the outside world he would appear like the doting boyfriend and expectant father. Inside the walls of our house he was completely different. I felt totally alone.
Alone until I would feel Cora move and then I knew it was two of us together. Breathe, Katrina. Its ok to grieve.
I decided to find out as much as I could about Down syndrome. Enough of relying on the doctors to answer all my questions. I started doing my own research. It seemed to help me.
Here is some of what my findings were:
> 82% of women terminate a pregnancy when they know they are having a Down syndrome baby
> many relationships don't survive the diagnosis of having a child with Down syndrome
> being angry is normal
> gong through the stages of grief is normal (there is that word again)
> you have to find the right doctors with the right attitude to make this a doable adventure
> you will never be the same person
Then I made one of the biggest mistakes during this whole journey. I googled Down syndrome children and what I found scared me. I started crying, sobbing with fear. I called Heidi (the support group from Traverse City) and she gave me the very sane advice to not google, to go to sites that were meant to be read by parents and caaregivers. Do you know what? I haven't googled Down syndrome since that day.
useful sites:
www.dsupnorth.org
www.nads.com
www.NDSS.org
These are a few of the resources that I was given during my pregnancy with Cora. My Ob Doctor, Doctor Wilder, was and still remains a phenomenal doctor and was very supportive during my whole pregnancy. He was wonderful at answering any questions or concerns that I was having. A good OB doctor is imperative to this journey.
Between January of 2011 and Cora's arrival I became well versed in the techinical idea of what it was going to be like to raise her. Now it was just waiting to hold her and see for myself that she was going to be alright.
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