Dreams come and go in our house. Mark and I have been haunted by all kinds of scenarios of Getty’s health since her diagnosis. Usually we can shake off easily, while other’s linger.
Some are absolutely beautiful and they have such a strong theme of hope. Dreams of Getty walking, eating by mouth, watching her talk in full and complete sentences, seeing her stumble and fall, only to dust herself off and run towards us. The beautiful feeling of a huge hug from our little lady and trips we would go on that have no machines attached. They are all beautiful dreams that sometimes in truth, I wish I could sleep just a little bit longer to see what else the dream brings to me. A dream I had the other night was celebrating Getty’s high school graduation. I wish I can describe the sensation I felt watching our little lady accepting her diploma. Physically I could not see how she accepted it, but she had the paper in her hand and it was magical.
And then there are other dreams that keep me up at night. It is a scary hospital stay. An emergency ambulance situation. A look in Getty’s eyes that something isn’t quite right. I could keep going on with examples but they get scarier and scarier and it just isn’t worth my heart to notate them here. But trust me, they are scary. But I embrace them, instead of pushing them to the psychological side. I need to realize and understand that they will come and stuffing them might make them even more unbearable. But they do shake me to the core.
Getty’s yearly MDA Clinic check up was coming up and wouldn’t you know it the bad dreams started coming on like a fountain of dread.
I was restless pretty much every night for the month leading up to the all day appointment. It is not so much the appointments I dread, I think it is more that I realize how dependent I have become on our safe bubble we have created here at our home and in the community for Getty. She thrives here. She is not spoken to as if she cannot think for herself or rather not be able to hear exactly what is being spoken about her. Getty is the center of our world, not a number and not a patient. I wish some doctors could understand that aspect.
So I simply do not look forward to these appointments. It is kind of like a necessary evil. Evil sounds extreme, but it is not pleasant.
It is an all day appointment that gives her a chance to see all of her doctors. A little bit of probing and minimal prodding, but mostly a lot of discussion about how great Getty is doing. Mark and I always have our list ready to go with all of the questions we have for all of her doctors and we have answers for all of their questions.
For that full day, Getty turns back into a patient and not my daughter. I hate that feeling. I hate the feeling that it is possible one of her doctors is going to throw us some kind of curve ball of information that we have never considered, which never happens but still the possibility is there. I worry that someone in their infinite wisdom will say something that will make me feel defensive or upset.
But we lucked out and the appointments went well and even though it was long, it was positive and relatively “quick”. Getty remains strong in the respiratory department, which we are over the moon about. Diet is on par. Overall not much has changed since they saw her from last year. I can’t tell you how great it is to hear, “she looks great”, “keep it up you guys”.
Getty needs some blood tests drawn for her diet, a chest x-ray to evaluate her lung capacity and an x-ray for scoliosis. Getty wears ankle braces to keep her feet in a neutral position and to try and minimize the chances of contractures. Knees also look good as well as her hands and fingers.
Overall we are so blessed and let’s face it, lucky. SMA, if I have not mentioned before, SUCKS! I have come to find that there is no rhyme or reason to this disease. Parents can do everything right and still SMA will attack their child in certain ways, while other children seem unscathed for the time being. I think that is why we seriously hold on to every day and embrace the here and the now. Mark and I are clearly aware that Getty’s health can change in a moment’s notice, but at the same time we need to live life.
It is not fair, it will never be fair, but we are just doing the best we can and so are so many families in our shoes and for that matter I would suggest any family with a medically fragile child. We all just want our kids to live and love life, even with this ridiculousness diagnosis and prognosis.
My advice for ANY family is to seriously take life one day at a time and embrace every ounce out of it. From sunrise to sunset there is so much love to give in all of us. Don’t reserve it, give it. That is all your kids want, that is what they thrive on.
As I step down from my soap box I have one more piece of advice for any parent. I am well aware that our lives could be considered different from a “normal” family setting. But our theme is the same.
We are all parents. We are all tired. We are all being pulled in all kinds of directions. We are all under some sort of stress. I would never compare someone’s stress to another, it is just different. Marriage is difficult. Single parenthood must be amazingly difficult. But here we all are, adults with children. We have the ability RIGHT NOW to make sure our kids know we love them.
Getty doesn’t care that I grieve as a mother. She doesn’t care that I am tired in ways I never even imagined. She doesn’t care that I would love nothing more than to have a moment to drink a cup of coffee without an alarm going off. That is not and should not be her burden to feel. That should not be any child’s burden to bear.
All she feels and sees is love from her mom and dad. All she sees is our silly, smiling faces. All she feels is her dad’s warm hug and his voice singing to her at night. Getty is surrounded by people that love her to the moon and back. Getty feels safe and secure.
We are NOT a perfect family by any means, but since Getty’s diagnosis, we were hit with a hammer to the head to teach us that everyday counts and I think that lesson should be learned and practiced by any parent, regardless of adversity. Love is free, love is contagious, love feels amazing. Imagine what that feels to a child.
Let’s keep spreading the love.
Off soap box. 🙂