Wednesday, 29 June 2011

Fiona's Story

I know I was smiling as the doctor was speaking. My brain seemed to be on delay as the words came out of her mouth and I starred into the compassion in her eyes. "Something is not right with the baby's heart". (Subconsciously, I made note of the fact that she choose to say "the baby" and not "your daughter".) The smile didn't leave my face, although now it was there more from nervousness then joy.

My world stood still for two weeks. Floating threw each day with a hundred unknowns. Whats wrong with her heart? Whats wrong with her feet? Are there any other deformities? Is there an underlying disorder causing the deformities? Will she survive in utero? Will she survive her first year? For me, the unknown was scarier then the known. Give me an answer, any answer, so I can find a positive and hold on to it with everything I have.

Those questions got me asking myself a lot of other questions. Mainly, why me, why my baby? There was a war going on with my emotions between accepting everything and completely losing it.  I prayed for strength for my little girl.

The call finally came.

Down syndrome.

My baby girl has Down syndrome I said to my self, in my head, numerous times after that phone call. If I could have pulled her out of my stomach and held her, I would have. My thoughts were filled with conflicting feelings. Feelings that I don't want this road, but I want her. Hope that this was all a bad dream or a mistake. That we were the 1 in a million who's amnio results were wrong. This is not what I had wanted, but I wanted my daughter, that very baby inside me with an extra set of chromosomes. I wanted her so bad that the thought of her heart condition taking her away from me was unbearable. I was a lioness protecting her cub when doctors even started to go down that road of "other options". And those first few months of testing and monitoring, I had to go on the defense a lot. It was not only initially assumed that I would abort, but encouraged. Most of the doctors referred to my daughter in disconnected terms to me such as "the baby" "it" and sometimes a little bit more acknowledging as "she". "She" was my baby, my daughter, my little girl. Their choice of words did not go overlooked on how they felt about the situation. Neither did the comforting words of the few doctors who still tried to treat my pregnancy as something special. Who called my daughter by the name we had chosen to give her and cared just as much about my baby as any other normal baby.

Her Down syndrome diagnosis was painful. I had to mourn the death of the baby I thought was in my belly and reacquaint myself with the differences and challenges the extra chromosome brought. I set out to educate my ignorance in what Down syndrome is, what my daughter would be like, and what kind of potential I could expect.

More alike then Different. A mantra in the Down syndrome community. And that's exactly what I learned and have found to be true as my daughter nears ten months. The more I researched, the more I found that my baby was going to be... a baby. She was going to need to be feed and changed and loved. She was going to learned how to roll and crawl and eventually walk, just maybe not as fast as her twin brothers did. She will go to school-elementary, middle, high school and possibly even college. I found that her potential was very near the same as the baby I had originally imagined I was having- a 46 chromosome baby. My  47 chromosome baby was just going to need some extra teaching and a whole lot of love- I could do that.

The heart condition was classified as a text-book Transposition of the Great Arteries, Complete AV canal, and only one valve. Two months later that text-book TGA "disappeared". Doctors called it a fluke, I called it God. The condition that would require immediate surgery was no longer there. We were going to get to take our daughter home for a few months before her heart surgery. Her Down syndrome diagnosis was suspected to be a form called Mosaic Down. I am hesitant to say, a less severe form of it, because its not always, but in our case, our daughter falls on the extremely mild end of the spectrum. Doctors called us lucky, I say we would have been blessed no matter how severe our daughter was.

Some days I was stronger then others. Most days, I cried. But as the months progressed, the tears changed from tears of mourning to tears from anxiety. I needed my baby to be in my arms. To see her face, feel her breath and to see that she was okay.

Fiona Hope Blaeske was born August 16, 2010, with a medical team prepared for the worst. But to every ones relief, she was better then anyone had anticipated. Her Down syndrome characteristics were so mild it had us questioning the diagnosis. And with the right concoction of meds, we were able to wait until she was 5 months old for her heart surgery , which was successful.

Her clubbed feet, that I was so terrified I wouldn't be able to look at the deformity, I couldn't get enough of. Now that we are fixing them, I miss the way her tiny baby feet could tuck up under her so comfortably.

She is a little bit behind for her age, mostly because her heart made her so weak for the first 5 months of her life. She doesn't just do stuff on her own, it takes teaching her and working with her, but eventually she gets it. And by teaching, I mean playing with a purpose. The early intervention state programs are amazing, and free! We get all the therapy we could possibly need through the state. Ours even comes to the house!

When ever I am looking at my beautiful daughter, I often think about the doctors who encouraged me to terminate. Its a rush of anger and sadness that over comes me. Anger that anyone would want to "get ride of" this gorgeous, incredibly strong baby. Sadness that they are ignorant about how wonderful the road less traveled is. And that they are ignorantly giving advice to scared mothers and fathers.

I know that my daughter is very well off compared to a lot of people with Down syndrome. But since she has come in my life, I have met lots of amazing people that fall all over the grand spectrum this disorder has. Their lives are challenging, but far from tragic. Because they make such positive impacts on everyone around them. Their parents all seem to be in agreement with us that the good parts completely out weigh the bad parts.

At Fiona's recent well visit, I filled out a development questionnaire. An are they doing this yet form. I checked off one Not Doing Yet box after another. But when it came down to the last two questions I was surprised with my response. Do you have any concerns with your baby? and
Are you having any problems with your child? My answer to both was NO.

I am not concerned with anything Fiona isn't doing yet. Because I know she will. And I am not having any problems with my daughter, she is amazing and motivated and setting her own standard of normal. This is what I wish I knew when I first got her diagnosis. I wish I could have tell-a-ported to this exact time and saw how content I was with this pace of life. I posted about using the "R" word a little bit ago. It comes from the Latin word, ritard, a musical term meaning to slow down. A beautiful slow down of tempo. That's what life with Fiona is like, a beautiful slow down. When people see how tiny she is and guess that she is only 3 months old (shes 9 months), or when she needs a little extra help learning something new, I am enjoying this slower pace of growing up. The tortoise wins the race. I know at some point, the gap will grow bigger, and my baby possibly may never be, say, a bio engineer or the first woman president (but, then again, I am not going to limit her potential!), but I have no doubt that my daughter will be a valued member of our society, the light of any room she walks into, and I couldn't ask for more.

If you are an expectant parent, scared of the future, trying to find hope, you will find it here- in the blogging community. It is what opened my eyes to the beauty of these kids, these people. You will find open, honest, but mostly beautiful windows into how blessed your life will be with that extra chromosome. I know that you may be looking at my daughter and thinking, "Well, she ended up with the best case scenario, but there is much worse" and you are right. But keep looking, because you will find even the worst are unbelievably blessed and beautiful and loved. I am not a special person to have a child with Down syndrome. I am no super hero or mother of the year. I just love my daughter.

Other source of comfort- National Down Syndrome Society's My Great Stories
Read Fiona's My Great Story HERE

No comments:

Post a Comment