I need to write to you in the hope that you will understand what you are putting me, your mother through these last few months.
You have blossomed into a little lady before my eyes. When did this happen?
You are independently finding ways to entertain yourself. When did this happen?
You are sassy and at times sarcastic with me and my motherly ways. When did this happen?
You watch movies or shows now and laugh literally when an adult should, which creeps me out sometimes. When did this happen?
Your attention span to absorb anything and everything is so beautiful. When did this happen?
Your determination to vocalize letters, numbers, and words, undeniably makes this mom’s heart sing. When did this happen.
You are learning and growing leaps and bounds in pre-school. When did this happen?
We fought so hard to get you everything you need for your education and yet as I sit behind you and your teacher and just watch and listen I am sometimes in agony. It is like for those few hours you are engrossed in math, letters, books, etc. you get to be with someone else and not me. You should be and you deserve to be, but this mama hurts sometimes. I guess if I could compare it to when I went to school and left my mom for the day. I wonder if she missed me? I’ll need to ask. Once school is over I get to see your beautiful face and we get to continue our day together.
I am so very proud of you babe. I am so proud of your determination. I felt compelled to tell your doctors just how incredible you are and all of the milestones you are accomplishing and how you are so crazy smart. I got to feel like that mom that beams from ear to ear to gush about their child. Yep, I am that mom. I remember after I gushed I looked at your face and you rolled your eyes, to which my response was, “get used to it missy, you are kicking butt kid and the world will know at any chance I get.” Sorry Getty but you are stuck with me.
I stopped seeing the word terminal a long time ago. I see the word future in every direction and I see all of the great things you are going to do and accomplish.
You get your power chair in a few weeks and I can assure you that mama is going to gush again. Everywhere to everyone.
When you were diagnosed I grieved about all of the things I thought you would miss out on in life. I grieved as a mother about the things I thought I would miss out on as your mom. But you know what? THIS is far better than I could have ever imagined as a mother and you, my little owl are more than I could have ever asked for. You are flawless, you are incredible, you are beautiful, you are patient, you are intelligent, you are a dream come true.
Now I just need to figure out how to get you to listen to your teachers and not sass them. If history serves me correctly I was the same way. So basically we are in trouble. 🙂
I love you.
Your ever so diligent and loyal servant,
Mom (Or the way you yell at me down the hallway, “Ommmmmmmm)
Come out to the Arden Sports Authority location THIS Saturday, January 25th from 11-4pm to not only register for our 3rd Annual Getty Owl Run/Walk, but also receive a 15% discount on anything in the store.
Here is the coupon. We will have them on hand as well. Come by our booth and register online, by check or cash.
Hope to see you there.
We are no strangers to fighting the medical bureaucracy to meet Getty’s needs. When Getty was diagnosed with Spinal Muscular Atrophy, with a dire prognosis of having no strength and being with us until only age 2, we swore we would provide Getty anything she needs to live the best quality of life.
Getty is almost 4 now and doing well with proper care, despite her lack of physical strength and the ripple effect from it. They were wrong about Getty’s life with SMA, and we have fought to prove them wrong. The latest fight on our agenda was for a power wheelchair approval, and we would not allow them to deny Getty the gift of independent mobility.
Getty cannot move herself, nor can she articulate words to let anyone know where or when she wants to go somewhere. We move her as best we can in ways we think will make her happy. How amazing would it be for Getty, at nearly age 4, to simply go wherever it is SHE wants to go? It’s no wonder she hooted and squealed as she drove a trial power chair, wide-eyed … even driving herself out the door.
Seeing Getty so capable and thrilled to experience independent mobility, there was absolutely no way we would back down in the face of the obstacles our provider put in her way. We argued, scraped, clawed, made seemingly endless phone calls and sent emails to anyone and everyone willing to help. We filed a grievance, did our own medical research, submitted nearly 80 pages of written argument, argued before a committee, and went up against Goliath for Getty to get her a chair. Our basic message: Getty deserves to “walk” like an able-bodied child.
About a week before Christmas, things did not look good. We were fairly certain the committee would deny the power chair, and we would be left looking forward to endless fights and appeals. We fired off one last ditch letter and hoped it was enough to tip the scales.
On Christmas Eve, Kaiser APPROVED Getty’s power wheelchair. The icing on the cake was a written APOLOGY for our “negative care experience.”
Receiving that letter ended a year-long struggle we took on for Getty. We were now finally able to step back and breathe, exhausted, realizing most of the major fights for things Getty needs are over and won. The power chair victory is possibly the last huge fight on the radar, and we greatly appreciate all the SMA warriors who joined her fight. THANK YOU!
Looking forward, we are so excited to see Getty driving herself around, going where she wants to go, and doing things she wants to do. We are elated Getty has strength and coordination to put a power chair in her reach. In a way, we feel privileged to fight for her.
We hope to blaze trails for SMA children who may follow Getty’s path. We draw on our experiences, passion, and skills to help other SMA families advocate for thier needs. We encourage not only SMA families, but anyone, to believe in the power of perseverance.
For years, we have been going up against Goliath — an enormous medical bureaucracy with a habit of issuing denials reflexively. The power chair battle alone consumed nearly a year all by itself. Through hard work, a refusal to yield, and tapping every resource and ounce of energy we could muster, we not only got what Getty needs but also an apology, as a nice Christmas bow.
Next step: Getting her own custom chair.