Tags
down syndrome, greiving parent, Life's Balance, Rockin' Mom, Special needs, Special Needs Mom, special needs parent, T21, Trisomy 21
People often feel sorry for me, for us, because we didn’t get to experience parenthood the way most do, the way we “should” have experienced it. Ya know–the sleepless nights, the exhaustion, the frustrations, the unfounded fears, the excitement of quickly reaching milestones…
Our introduction into parenthood was fast and furious, and fearful too. In truth, those first days were not full of heavily exhausted bliss like most parents experience. I literally hit the ground on my knees, while my husband sat with tears in his eyes and fear on his heart, and I prayed that God would take me and not my sweet baby. We never let go of the fear, we were never, “out of the woods”; we lived in the woods, we just learned to move within the woods.
When our second daughter was diagnosed with Trisomy 21 (Down syndrome), people felt sorry for us. They knew our first experience with parenthood was fraught with fear and loss, and they thought a child with T21 would be similar. They wanted more for us. They wanted us to have joy and “normalcy”. And, to be honest, upon our first reaction to the news, we kind of wanted that too.
But, we were destined for a different path than most follow. And what people don’t know is that we hit the jackpot, with both of our children. There is absolutely no need to feel sorry for how we experienced parenthood, that it was and is different than most. Yes, we lost our first daughter and the pain radiates through my body every day. But, the pain is so strong because our love was so fierce. Balance. In life there must always be balance, regardless of how we like the way Life finds the balance for us at times.
Our first daughter brought us the purest joy the world had to offer. She changed us in ways that could not have been done without her presence. She helped us to LIVE this life in ways that were important. She helped us understand beauty, faith and love. She was miraculous and filled our hearts with wonder, every day of her life. This is not meant to be demeaning to other parents and their children, but, in my opinion, most people don’t get the purity of joy and the awesome wonder we got. Why? I think it’s because they get to keep their kiddos for the long run, it’s Life’s Balance at work again. We got it all, hot and heavy right in the beginning, for four precious years, because that’s all we were going to get with her. And, boy, what we got was more than I could have ever expected, dreamed of, or asked for!
And then, our second child? Good God! How could we get such marvels twice in one lifetime? It’s different of course. It’s much more like the average parenting experience, in that she is reasonably healthy, I don’t have to fear for her life every moment of every day, she is meeting milestones in a fairly timely fashion, etc. But, it’s like the happiest of mediums between the world of our first daughter and a typical child–it’s not without challenges and super hard work, speckled with a bit of fear and nervousness; but, every minute is not shrouded with legitimate life threatening fears. She has taught me how to feel truly exuberant, and she introduced us to Hope.
We hit the jackpot!!! Twice! We hit the jackpot not only with our children, but we also hit the jackpot with the people our children brought into our lives.
With our first daughter, she led me to a group of wonderful, amazing Mom’s and their families. They accepted our little family and wrapped us in love, and still do. They are steadfast friends and I am forever grateful to have them along our journey.
With our second daughter, she made me a Rockin’ Mom, part of a group of Moms who have children Rockin’ an extra 21st chromosome. These Moms are, “My People”! I am part of a community of women who understand even when I don’t say a word. Wow. How lucky am I? I am one of the Lucky Few, indeed.
Not only have my children enriched my life with their presence of being, but they have opened up doors to relationships that build me up, fill me out and make me whole. God is good.
Sure, most people don’t get it at all. They wouldn’t think this life is very “jackpot-esque”. But, that’s not important. We get it. That’s all that matters. The challenges in this life are part of our path, they are the fabric that weaves together the pages of our story; it’s beautiful and painful, wonderful and frightening. But, that’s Life’s Balance. We move through each day with the intent to have open minds and open hearts; and we make cognizant efforts to lift ourselves up to hope and faith each day. That’s what you do when you win something so amazing, so surreal, so magical.