I am not one for New Years resolutions, however this year I have set myself one. One blog post per week, published on Sunday night, commencing today. So, without further ado:
Christmas is now over, the new year is upon us and Elva’s first birthday is just around the corner. The past year was incredible, amazing, wonderful, exhausting, overwhelming, heartbreaking, healing, filled with love and joy, and the most intense and possibly greatest year of my life. We learned and grew, broke and re-formed. It is a year that I hold dear in my heart, and never want to live through again.
Just before Christmas we were out finalising gift shopping and Elva became frantic for a feed. I flopped down on the nearest seat and proceeded to nurse. Sharing the seat with us were a grandmother and her grandson. Rory and the boy (who was maybe 4 or 5) started interacting and eventually the grandmother and I started chatting. Elva finished nursing and wanted to see what was going on, so I sat her up and she babbled and waved and was generally adorable. The conversation continued around Christmas and the end of the year, and then flowed on to the overseas holiday which we have booked in March. At that point the grandmother remarked “well that sounds like a good idea, you’ve had a hard year I imagine”, whilst briefly glancing at Elva. My breath caught in my throat and I stared at Elva’s beautiful little face. We’ve been tooting along in our happy little world just doing what we do for a little while now, and I have gotten to the stage where sometimes I can forget that people look at Elva and see anything other than a very engaging and adorable baby. A hard year. Well yes, there have been hard times. But you cannot possibly see what those hard times were just by looking at us.
Elva’s premature birth is not obvious. You cannot see 2 surgeries in her first days of life, or the fact that one of those surgical sites leaked her stomach contents into her abdominal cavity until her stomach was distended and strained like a balloon. You cannot see ventilation, CPAP, drains and long lines. The fluid retention that left her swollen and bulging has long since subsided. The speckle of far too many tiny IV scars is only obvious if you closely examine her arms, legs, hands and feet. There is no way of knowing that for a while the largest volume of anything entering her system was antibiotics, or that she lived on IV nutrition and went hungry for weeks. You cannot see the stress and fear when her second surgery went far over time and no one could tell us why, or the many, many shed tears over blood draws, cannulas and heel pricks. There could be no way of knowing the hours spent teaching her that hunger wasn’t a normal feeling, of 2 hourly alarms and frustration at myself when I would sleep through them at night. Of the fear and anger when she was unnecessarily put onto restricted, continuous tube feeds when re-hospitalised with bronchiolitis, or that it was done while I was asleep so I could not advocate for her. None of that is visible to the casual observer. All they see is Down syndrome, and that is why they pity us.
I understand that mentality, and I understand it comes from a caring place. But it also comes from place of ignorance. It breaks my heart that people can look at Elva and think “what a hard life”, for her or for us. She is not a burden to bear. Elva is not our cross to carry. We all face different challenges, we might have different idea’s of ‘normal’, and different expectations for our days – but our lives aren’t made hard because of her, just different.
2015 had hard times, but it was also filled with love, joy and wonder. With pride at the tiny little person who fought to exist from the moment she was conceived. We watched and prayed as she fought and exceeded expectations at every turn. When, after 3 long weeks of an empty stomach she worked so hard to breastfeed. We were overwhelmed with elation, pride and relief when we succeeded and came home long before any professional had predicted. Our year was filled with joy filled milestones, with delight at games being played and smiles being won. With 2 giggling mischief makers playing in the loungeroom and never letting mummy in on the secret. We had waving and cooing and babbling. Big wet sloppy kisses that knock your glasses off and just fall short of giving you a blood nose. And cuddles. Endless, endless melt-in-your-arms-and-forget-the-world-around-you cuddles.
Down syndrome is a part of Elva, but it is only a part. She has blue eyes, curly hair and a bubbly giggle that her big sister can bring forth with ease. She loves food and will get very cross if you eat in front of her and do not share. She’s cheeky as anything and will ignore requests for kisses, only to whip around the second you stop asking, grab your face and smoosh it into hers. She is a total mummy’s girl and knows exactly how to convey when she is unhappy or displeased, but will applaud you when you make her happy. She will sit in your lap and chat with you for ages, before demanding a high energy session of ‘row, row, row your boat’ followed by enthusiastic applause. She gives the best cuddles I have ever had, and loves to snuggle. She complex and interesting and engaging. Yes, Elva is so very much more than Down syndrome.
Elva coming into our lives, exactly as who she is with Down syndrome and everything that that has entailed, has been the greatest thing to happen to our family. She has opened our eyes and our hearts to a whole world of understanding we did not previously have. She is our baby, just as Rory was our baby, and when we are with her we don’t see Down syndrome, or hypothyroidism, or disability. We see our Elva, and we know that we are terribly, wonderfully blessed.