As we have journeyed through life since Getty’s diagnosis, there have been situations or experiences that would be far better explained from the lyrics of a song. You know how a song can really capture a thought, feelings, or just an overall summary of an experience.
Well as Mark, Getty, and I sat in a room in the department of Pediatric Specialties, and we watched doctor after doctor introduce themselves and talk to us and then leave, only to have another one come in and do the same. Kind of like a revolving door of specialists. At exactly the same time there was a song playing in my head, perhaps to calm me, but really to capture the experience of September 7th. I could hear the song Wonder, by Natalie Merchant in the background of my mind. It is a sweet song that embraces the mystery of the human being. I am bias, I think Natalie wrote it for all of our beautiful SMA babies. 🙂
Some of the lyrics perfectly capture Getty’s experience. “Doctors have come from distant cities, just to see me, stand over my bed, disbelieving what their seeing. They say I must be one of the wonders, God’s own creation, and as far as they can see, they can offer no explanation.”
There was a moment yesterday that reassured me that Mark and I were doing all we could for our little owl. The neurologist mentioned how “plump” she looked. “She must be getting so much love, keep it up you guys.” Mark and I grinned from ear to ear.
Getty was examined by all of her doctors and they were just elated by her progress and were excited by her strength. We couldn’t agree more.
The picture attached is a Getty and her Crunchy Lion. She seems to take him everywhere she goes.
The consensus is that Getty’s systems are strong and stable. Her blood oxygen levels, respiration, swallowing, and digestion are all normal. She doesn’t need any special equipment yet, which is great news!
Kaiser Team Getty is a wonderful group of people and they all seem genuinely eager to help her however they can. Thank you!
We need to prepare Getty for winter because something as simple as catching a cold can really take a toll on an SMA baby. Otherwise, other than hypotonia (floppiness), all signs are good at this point. Now that we have a solid baseline, she’ll be visiting members of Kaiser Team Getty about once a month.
Labor Day weekend brought a few firsts in the Storm household. Sunday, Getty and I enjoyed a great walk with Takoa and her two beautiful children, Mady and Charley. The walk and the conversation was much needed and we enjoyed looking at all the nature around us. Thank you Takoa for your support and time.
Getty tried solids for the first time. A bit of rice cereal was not to Getty’s liking. She opened her mouth when the spoon came to her lips and then she spent more time spitting out the contents. It was very fun to watch.
Another first was for Mark. We ate in old sac and found that the restaurant
we ate at did not have an elevator, so daddy picked up Getty’s stroller with her in it up three flights of stairs. Thanks daddy!
Tonight my Mom and I tried rice cereal again. Thinking Getty was not going to be interested, we were pleasantly surprised when she happily opened her mouth and happily swallowed every helping. Followed by a quick rinse of milk and she was a happy camper. Way to go Getty!
Tomorrow is a big day. The doctors that formed Team Getty at Kaiser will all be meeting with us, we look forward to meeting everyone.
The picture I am attaching is Getty and her new friend, “crunchy” Lion. She gave him her formal licking, so we know he is now a member of her animal pack.
Goodnight little owl!
In roughly a month, Mark and I will be celebrating five years of marriage. From the moment I met Mark I knew I was spending time with a wonderful man. He is engaging and when we would go out on dates I knew that to him, I was the most important person in the room. He is patient and he is deliberate in his word.
I remember when we found out about Getty’s arrival, we both were a bit shocked, but I think inside we both were so ready to become parents. As the months went on Mark went to every appointment, participated in every parenting class, and also was willing to rub my throbbing back in the last months of pregnancy. Mark has always been present and willing to lend a hand. We were a team.
In the labor room, he as there, actively making sure I was comfortable and coaching me along the way. We were a team.
Getty’s arrival has not changed Mark, it has just made him an even better husband and now father. The characteristics I have always appreciated in him have become even more apparent.
He is an amazing father. After going back to work after 6 weeks of maternity leave, he and Getty created the “Daddy & Getty Club”. A very exclusive club that developed a mutual love for one another. So exclusive in fact that there were times when I would come home from work and Getty would look at me as if to say, “Mom you need to wait your turn, I am with Daddy right now.” It melted my heart.
Mark is conscious of Getty’s needs and he is always doing his best to give her and I love and attention.
Our marriage has obviously been tested with a diagnosis of SMA. Can you nurture a marriage and a child with the same kind of care? Can two individuals who are equally consumed by grief, take care of each other? I can say this much as of right now, I wouldn’t want to be going through this journey with anyone else but Mark. He is Getty’s favorite guy, and he is my teammate. We are doing this together and I appreciate his love for both of us.
Five years ago I agreed to be a part of a team, but at the time I was not sure what that entailed. Now it is obvious what it takes to stand together and walk this journey together.
Mark, I thank you and I love you.
I hadn’t thought about the emotional toll the body goes through. I mean I knew I would have my moments throughout the day, but what I wasn’t ready for was the constant and unwavering blanket of grief that seems to follow me throughout the day. It is like a shadow at all times of the day and it slowly zaps my energy. I am thinking of Getty, I am grieving her condition, I am thinking about Mark and wondering if he is feeling the same way, I am thinking about the future, I am thinking about the present, and all the while holding up my end of the bargain and trying to be the best teacher I can. Exhausting is really the only word I can come up with to describe it. So the majority of this Labor Day weekend will be for sleep and snuggles.
Yesterday was Getty’s barium swallow test. We weren’t sure what to expect. We knew she would be given a series of x-rays to determine what her strength was, but we were not sure if we would be given information at that point or if we would have to wait until the 7th when we see all of the doctors.
Mark and I were a little frustrated with radiology. They didn’t seem to know how to make Getty comfortable while also x-ray her. Because Getty can’t hold her head up on her own for very long, it was difficult to feed her, hold her head, and do the x-ray. Mark and I saw that “their way” wasn’t working, so we took charge and made sure Getty was as comfortable as possible. My Momma Bear instincts came out immediately and I swear if I wasn’t a civilized person, I would have given that technician a piece of my mind.
Fortunately the speech therapist gave us the news immediately after the screening. She determined that Getty’s swallowing was normal. Normal like a regular 5month year old. I can’t tell you how incredible that sounded to our ears. She felt that we could start trying some solids. We are really excited to jump in with solids and give her some more variety aside from the usual formula.
Stacey came over for dinner and we gave some more discussion to a craft fair that will be coming up soon in Getty’s honor. When we have all of the details figured out I will definitely pass the word along and if anyone in the Sacramento area would like to come and spend the day looking and buying some incredible crafts, know it will be for a great cause. Stacey thank you for your kind way of helping our family. You have been an absolute gift to us.
The picture I am attaching is a picture of Getty in her new official owl hat. Stacey knitted it with great care. Thank you so much, it is just precious.