So . . . clearly I’ve taken a bit of a hiatus from blogging. My reason is that I’ve been adjusting to life with three children, and specifically, to the diagnosis of Trisomy 21, or Down syndrome, for my baby. I’ve spent three of the last thirteen weeks in a hospital with my daughter, who also has a severe heart defect requiring open heart surgery next month. My days have been filled with things like inserting feeding tubes, learning new medical terminology, and setting up appointments with more specialists than I ever imagined a newborn would need.
I’ve actually done some writing during these three months since Amelia joined our family, but I have been hesitant to share for a few reasons . . .
One is that I’m new to the special needs community, and I am worried about offending the caring and welcoming parents who have reached out to me. They are further along in this journey and wiser; I don’t want to say something ignorant, even though I’m sure these folks would be most gracious.
Also, I don’t want to put things out there that don’t respect the gift of my daughter. Emotionally, I’m not yet where others have promised I will be, enjoying this whole adventure. I trust those who say I will get there, but right now I’m seeing more of the challenges than the rewards. I love Amelia, but, honestly, I’ve had some ugly thoughts that I’m not sure should be shared.
Lastly, I want to be genuine in what I share in my blog posts, and I hope they are meaningful to others in some way. I have been in a world of disappointment, grief, and uncertainty, with my fears being sometimes for Amelia, and sometimes for me and the rest of our family. But I have also experienced much grace and kindness and felt blessed as Amelia’s smile has charmed me. My feelings can be conflicting, and I’m finding that grief does not happen in a straight line. My perspective today may not still be true by the time I hit the button that publishes my thoughts.
That said, I want to get back to writing, and so, with some uncertainty, I will get started by sharing some of the basics for those who have expressed concern and been interested in our new family member.
Amelia was diagnosed with a complete AV canal defect in utero. At that time, in my fifth month of pregnancy, my husband Eric and I were also told that our baby could have numerous chromosomal disorders, including Down syndrome. We were reeling. Doctors were saying unthinkable things about options that dishonored our child. My parents arrived from Ohio the next day to allow Eric and I to process this while they watched Weston (3 ½) and Madelyn (almost 2). But, soon after, I was given the results of an advanced blood test. According to this highly accurate test, we were not carrying a child with Trisomy 21. (I am now being written up in a medical journal as possibly the first person whom this test has failed.)
The day of Amelia’s birth was two weeks earlier than the date of my scheduled c-section. It was just Eric and I who first saw our daughter and realized we had been inducted into a club we never asked to join. My next few blog posts will share some of those dark moments in the hospital. Though you may appreciate some new insights about life in the I Have a Special Needs Child club, I can’t guarantee you will like what you read. Some of you may stop in, look around, and leave feeling grateful to have been denied membership. Others of you will wish you could join this club instead of your own, which has an even more painful initiation.
I’m still learning about the club myself. I trust God and His ways that are clearly higher than mine, but on most days, I still want to trade my membership card for a new one that reads: I Have a Typical Baby. So I will be honest about my struggles. But, I will not write as one who has no hope: I anticipate gaining more appreciation as I explore all the aspects of this club; I will share that, too. And though I have, to some extent, been living under a rock, I haven’t completely missed the appalling, entertaining, and interesting things going on in the rest of the world, so I will be blogging my observations of those soon as well. More to come…
For another post about Amelia’s birth, click here.