This was written today by my dear friend Dixie Lawrence, who has been SUCH a blessing in our lives. It is about Down syndrome, but can be applied to so many other things as well. Love you Dixie!!!!
AUG 6 2015 IMPORTANT – PLEASE READ. TODAY I want to talk to you not as a scientist or your personal DS guru or whatever you think I am to you, but as a mother and your FRIEND travelling the same road maybe just a few miles ahead of you. Because I am a scientist, I cannot prevent that part of me from bleeding over into the rest of me and it will undoubtedly do so in this message.
First, I looked at Madison this morning, drooping over her breakfast. I got up and walked in on a private ritual she shares every morning with her Dad. He wakes her up, cooks for her and they share this time even though Madison is what we lovingly refer as ‘NOT a morning person’. It occurred to me when I tried to coax a smile and a little recognition from my sleepy daughter, that she’s not hungry that early in the morning. She drags herself out of her cosy bed because it makes her Daddy happy to make her breakfast and spend a little alone time with her. She does this out of a profound sense of love and respect for him. We are so busy doing things for our children that we sometimes miss the amazing things they do for us. They are not trying to ‘fix’ us, not fighting an extra chromosome for us, they simply love us. Pay attention to those moments, they are more reflective of how able your children truly are than hearing them recite the Gettysburg Address.
The other thing that struck me as my scientist’s brain kicked in was that her body was out of sync with her heart. How many times have we been so tired and frustrated that we think we just can’t do this anymore. But we do, because we love these kids more than we love life and it is the right thing to do no matter how we feel. And I saw something in her droopy, sleepy eyes that I have never seen before. I know it exists and I sense it constantly but I had never actually ‘seen’ it before. I saw a glimpse of the perfect, conscious, incredible soul that dwells within her. It is not deaf, does not have Down Syndrome, is intelligent beyond our earthly understanding and wise beyond any ‘normal’ person will ever be. It stunned me by it’s beauty – though ‘beautiful’ hardly describes it.
That perfect being is driving a 1990 Nissan Sentra when we expected her to arrive in a 1990 Porsche. But she got here in it safely and it is what is inside the vehicle that is important. That initial grief parents feel when something goes wrong with the baby wouldn’t hurt so badly if we just recognized the human body for what it really is. It is the imperfect vehicle driven by an absolutely perfect soul.
Like a Sentra, when we were expecting a Porsche, we might be taken aback by how it looks but then, we are struck by how very cute it really is, cuter than the snazzy lines of that dream car. And how amazing. Did you know that not a single one of our children should have even made the journey from conception to birth alive? The cellular disturbance caused by the domino effect of hundreds of excess proteins is more than enough to completely stop the cells (all three trillion of them) that make up the brain and body of a child with DS from functioning beyond a few rudimentary divisions. In fact only twenty percent of fertilized eggs with an additional 21st chromosome actually survive. But here your child is, your very own, unexplainable miracle. Your proof positive that life is more than cells and some human spirits are so strong they survive in bodies made of cells that really should never have been able to divide even once. Never mind surviving to have all their parts, fingers and toes, arms and legs. Many even survive the journey with hearts that should never even have beaten so devestating are the defects. Did you know that if your heart suddenly developed a hole between chambers, you would not survive to make it to the emergency room? An injury as tiny as a toothpick to the human heart can stop it from beating. That is how determined that perfect spirit of your child was to make it into this world and I believe the determination was powered by love. Love so strong that the word does not come close to describing it. It is what you feel when you look at your child, that incredible bond, that connection that nothing can diminish. Newborns feel this the second they see the mom and dad they fought so hard to be with. Even if your heart is temporarily broken because the baby you dreamed about and longed for did not arrive, they still extend that love. And that is because at one minute old they know more than you do with all of your years of education and life experiences. They know that that very baby, the one of your dreams, most certainly DID arrive. You aren’t caring for some changling or mourning a baby who was never born. Oh sure, the journey was shockengly harder and almost down right impossible. But the child you imagined, prayed for, hoped for beat insurmountable odds to get to you.
It’s your turn now. Your turn to keep that Nissan Sentra in perfect working order, to change the oil, use the best gas, fine tune the engine. To make the drive through life as easy for your child as is humanly possible. No matter what you do, it will never be a Porsche, but it will be the most beautiful, reliable vehicle you could ever hope for. Don’t worry about the driver, he or she has always been and always will be perfect.