And this is when the plans all came to a screeching halt. Anabelle arrived with a completely new plan in mind. Nothing could fit into the perfect little collage frames I had already envisioned in my head of the perfect little memories my family was about to build. I had rows of matching little girls clothes hanging in two closets in side by side rooms: 3M and 3T size. All ready for that first summer when I would take my perfect little girls to the playground and the zoo, and their grandparents 40th anniversary party that was planned for three weeks after Anabelle was born and for which the invitations had already been sent. Most of those matching outfits were never used. Anabelle spent the first two months of her life in the NICU. Elyse was 2 years and 10 months when her sister was born, and in order to visit a sibling in the NICU, you had to be 3. Anabelle was released from the NICU 4 days before Elyse's 3rd birthday. They met for the first time in the waiting room. She was wearing 6M clothing by then. My perfect matching outfits were a total waste. My Jewish grandmother would have warned me about bringing stuff for the new baby into the house before it had arrived safely, it was bad luck. Guess she was right.
I've pretty much reached a point with Anabelle that I have stopped comparing her to other children her age and grieving for what she will never have. But the piece that I have NOT come to terms with is what ELYSE has lost. Everything I had wanted for her to have in a family and as a child that is no longer possible in the way I imagined it. Growing up, my brother and I were four years apart. We loved each other, and got along about as well as any brother and sister, I guess, but we were not CLOSE. The age gap ensured that we were never in the same school at the same time, never at the same place in life. Could never join the same classes or sports teams or have the same friends. When we planned the spacing of our children, it was with this in mind. I wanted them to be closer in age. Not so close that Elyse was forced to grow up before her time, but not so far that their lives would be forever in different places. Hahaha, got the exact thing I was trying to avoid, now have two girls who's lives will be FOREVER in different places!
I cannot put into words how heartbreaking it is that we failed to give Elyse the playmate and lifemate that we set out to provide. How is feels when I watch Elyse try over and over again to include her sister in her play, but then get bored with it after a few minutes, because who can really be entertained by someone who does not play back? Every time Elyse asks me to play with her and I have to say no because I have work or chores or am caring for Anabelle, I am wracked with guilt, because it is NOT HER FAULT that she has no one to play with. She was supposed to have a sister for that.
And while we both hope that there will be another sibling somewhere down the line, it is already too late for the relationship we wanted. Elyse is now four. The earliest she could get another sibling would be when she is 5 (and since there are NO immediate plans to start on that one, it will be even further in the future then that). I am sure she will love the new sibling and care for it and teach it, if and when he/she ever joins our family, but she will no longer be in a place where SHE benefits AS MUCH from the relationship as the younger child will. It will not be a playmate as much as a responsibility to share, someone to teach and watch out for, but not someone to share life events with, share secrets with, share clothes and shoes and makeup with. It will be totally different from what I had planned.
But there it is. The best laid plans and all that. In the immortal words of John Lennon, "Life is what happens to you while your busy making other plans." Perhaps if I wasn't such a planner, I wouldn't have suffered so much when my dreams didn't come true. If I was a roll-with-the-punches, deal-with-whatever-life-hands you type of gal, I may have been better equipped to bend and mold my life around my new reality. It was a lot harder for me to accept what happened than it was for my husband. Than it seems to be for a lot of the other special needs parents I know (of course, I would never presume to know what REALLY goes on in their minds). And now I'm having trouble building a new future in my mind, because I know what it feels like to have the rug pulled out from under you, and I never want to feel that again. So I am trying to become a more flexible person, trying not to have a panic attack when I don't know exactly what is happening at every minute. Trying to have faith that there will be good things to come, happy memories, a loving family, in whatever shape, size or form is presented to me. And trying to stop grieving for what I always thought I wanted. Because I have to face to pure fact that just because I wanted it, does not mean it was EVER guaranteed to me.
Sisters meet for the first time right outside the NICU on Anabelle's two month birthday
FINALLY in the matching dresses meant for my parents' 40th anniversary party over a month before (Anabelle was still in the hospital that weekend, recovering from gtube placement)
Sharing tummy time
Elyse thought Anabelle looked bored, so tested EVERY toy, trying to engage her
Always a favorite activity around here: Elyse singing to Anabelle
Daddy's girls enjoying the return of football (both intently watching the tv screen)