So I really thought I had truly, deeply, fully accepted Rowenna’s diagnosis. I could read about what to expect and not freak out. I could see our upcoming milestones and see ways to help her get there. I could talk with moms of other children with Down syndrome. I could spend time with “typical” babies and not completely lose it.
Then Rowenna had her surgery and I realized that these last 18 weeks I’ve been trying to get my baby ready for surgery and Down syndrome hadn’t settled in my heart yet. It was definitely settled in my brain -I am a completely logical being and totally accepted the “it’s not going anywhere” aspect of her diagnosis.
So Rowenna came out of surgery with flying colors and has been healing like a champ. Then an occupational therapist came in and called her a “Downs baby” and a short hour later a speech therapist came in and told me she may never be able to fully feed herself. My world came crashing to a halt. It wasn’t some slow realization, it was a full-on, visceral reaction that had me instantly in tears and completely unable to finish the speech therapy session with Rowenna.
Until now, I think I’ve been having a mostly surface reaction to Rowenna’s diagnosis. I’ve been reading the right books and meeting the right people and getting upset about the right things. This has been helpful, though, because it allowed me to tackle her heart condition and care for her as well as I could. If I had really let all of this sink into my heart at once, I think I wouldn’t have been able to be so effective all these weeks.
And I think it took someone who should absolutely know better (someone who works with special needs kids for a living) to underestimate her and all the wheels in my heart clicked into place. Down syndrome is not going away. It’s just not. We fixed her heart but Down syndrome is here to stay.
The things I have felt and written about are authentic. I even went back and reread these few blog entires I’ve published and they all ring true. They even make me think I was subconsciously aware of these feelings all along. But now I feel it. It’s here. It’s right in my heart.
I was trying to express all this to a very dear friend of mine. This was her reply:
It sounds like you are coming from a place where you are taking everything a step at a time and now that you’ve gotten past the hardest physical part you have reached a point that no milestone will surpass. You’ve reached what life is.
Wow. Did she ever nail it! She is absolutely, 100% dead on here. I have reached what life is. I am a mother. A proud one, at that. I am a mother of a beautiful, blue-eyed, red-headed, spunky-as-can-be 4 month old girl. I am also a mother of a child with Down syndrome. It doesn’t define me, it certainly doesn’t define Rowenna, but it’s a part of us now.
This is what life is.