One Year Down
Praise the Lord, we made it! Yesterday we celebrated Annette and Charlotte’s first birthday. After wading through surgeries and sicknesses, we have seemingly emerged into the dawn of a new season, equipped with lessons learned in faith, joy and hope-words only cliche until the storm picks up. Our precious girls sat in front of me yesterday wearing tutus and tiaras, and I sat in awe of what we have endured, with gratitude and a tinge of anger.
Last year, six doctors separately presented the option of abortion. They failed to mention a life without the sound of Lottie’s soft coos, or without kissing the one freckle on Nettie’s forehead. Experiencing these girls is a dream, yet fear and ignorance too often depict their diagnosis as a nightmare. We didn’t have answers at that point, only a lot of nerves over a serious heart defect paired with a little faith. Our faith was, regardless of a future filled with oxygen tanks and feeding tubes, in that we would be facing the unknowns with God and a willingness to love. After finding that foundation to be secure, we now long to spread the message for expectant parents, medical professionals, educators, legislators…the world, and remove any hint of sadness or fear accompanying a Down syndrome diagnosis. Trust us, with or without the tanks and tubes, you would not want to miss this.
Last year, we received many unsolicited comments of doubt, concern, and a slew of negative possibilities; we chose joy. We continue to choose joy. Eradication, discrimination, and segregation- these real occurrences are garbage and while we acknowledge them, and we will fight to correct them, we refuse be owned by them. The only note made on negativity, is in order to remember exactly what it is we hope to replace for future parents and their own precious babies. Accounts of feeling loss and grief, reflect a lie sold to numerous incredible families, and it is the loss of joy in those moments that make me angry for them. So, to all of those initial conversations that will contain layers of hesitation, condolence, and reassurance; disregard. To the comments of potential struggles; disregard. To those sweet moments adoring your newborn; cherish. Reclaim your joy.
Last year, during our 36 day event of Lottie’s heart surgery, we decided to cling to hope rather than fear. We now carry it as a shield into each coming day. In creating this blog and sharing our story, we called the bluff of the luminous future depicted through literature and statistics, painted by the primitive thinking of today and years past. The name Doubling Down Mom was selected as a fun play on words, but also in reference to the game of Black Jack. To ‘double down’ means you believe in the hand you have been dealt, to the point of doubling the stakes. It means you are certain that based off of what you are holding, (be it cards or babies) you are confident that you hold a secured victory, regardless of what the next step brings. It is never too early, or naive, to stand in hope.
Our daughters are officially one year olds. Two little girls, individually thoughtful, and rambunctious and collectively, (along with their brothers) our greatest boast. They raise their arms to be held, cry when they are tired, and laugh when I tickle their necks. It’s all standard, yet marvelous. Down syndrome is simply that; marvelous, standard, people. People worthy of love and inclusion, worthy of human rights, and the opportunity to learn and participate as members of society. As we move forward, we are excited to continue our boasting, alongside our community, sharing a common desire to stand for inclusion and acceptance of all genetic makeups. We are confident in our hand. Faith got us to where we are, joy lights up the present moments, and hope carries us confidently into the future.