This morning has brought with it some uneasy feelings. Getty’s surgery is quickly approaching and I feel my heart pounding a bit faster. Making list after list to make sure I am not forgetting a single thing for our stay at the hospital brings its own anxiety. We were informed on Wednesday that Getty will be admitted on Saturday morning.
In my mind I was planning for Sunday and when we got the updated date, I felt uncomfortably jarred with the knowledge that we have lost one day of “regular” life.
Since SMA has come into our family, it has always felt like an unwanted guest. It has felt like a force that just kind of lingers in the house only to slowly rob our beautiful daughter of strength and that, frankly, is it. Getty smiles every day and giggles with delight in just about every environment and situation. Her mind is alert and so incredibly inquisitive. Every breathing exercise she embraces and she is such a trooper, unaffected by the noises from the big boxes that either blow air into her lungs or suck the secretions out of her little mouth. Her spirit and her soul are unaffected by this disease. She frankly couldn’t care less about who you (SMA) are, all she knows is that loved ones surround her with unconditional love and support and she is free to learn, to express, and thrive.
So I am making a list of things that need to get done before we leave, a list for things to take, a list for things we need to make sure we advocate for when Getty is admitted, a list of toys/blankets that Getty needs to feel comfortable, and one mass list that includes all of my lists. 🙂
So what can we except when we get there? Too be honest I haven’t thought about it. I am learning that the only control we have is that over our child. I am not going to consume myself with worry at this point, what would be the point? So I will say this, we will have our own room, every nurse will be sanitized and aware of her diagnosis and if we need to educate we will. We will make Getty’s environment as close to normal as possible, right down to our routine for bedtime.
Even though this is uncharted waters for our family, Mark and I are united in that this is what’s best for Getty. The g-tube and Nissen procedure will give her the ability to eat safely and that gives us peace of mind.
Since the surgery is quickly approaching, yes there is anxiety, uncertainty, and overall unrest, but we are doing this together and that in itself gives us peace. We will be in the hospital together and we will walk together.
We want to thank all of our family and friends that have offered their love and support. Thank you to the SMA community. It has been so valuable to lean on a lot of you for advice and resources. We want to thank Mom for her willingness to hold down the fort while we are gone and to take such great care of our older baby, Cooper.
So here we go, we will try our best to keep Getty’s blog updated in these next few days.
Good morning….Your family has sucked us all into your lives. I read every blog, sometimes with MY heart beating in my throat, sometimes with tears, and other times with a smile. Getty has captured us all, with her determination, and you and Mark have turned into the “Advocates” that we, as parents, would do for our children, in this type of situation. You are now wise beyond your years, as is Getty. You’re all in our daily prayers, and then some. Bless you all, and we will be thinking of you, as you go into the next phase of this awful disease.
Thinking and praying for you all as you get ready for the nissen/gtube!!! Praying it’s flawless and a short stay! Sounds like you are very diligent–good for you!!! Hugs and prayers
Sarah and Stella
Peace be with you and your sweet family.
Another step forward for GettyOwl on this journey that all of you have entered into…..that’s the hardest part of any path – is the unknown! Kate & Mark you have been so incredible with the strenght & spirit you have embraced your little Getty with!! Our family has been thru alot in the past three years, and without all of you and your Love & Support it would have been so much harder! Please know that you already have our hearts and don’t ever forget the hands that are waiting for you when you need them…..they are extended! Miss Getty – thank you for the great pic this morning to Auntie….I have already shared it with so many in the family…….you are so “Darn Cute”! I just want to HUG YOU RIGHT NOW!!!! (Hug her Mommy & Daddy for me!!!) Love to all of you – GROUP HUG!!!!
Getty, Mark and Kate –
You will all be in our thoughts this weekend. Hoping the procedure goes smoothly and that Getty is able to return home quickly.
Love from us all,
John, Leslie, Rachel and Sarah
Precious Getty, 8 months old this month. We would love a photo with your 2 new baby teeth showing in your engaging smile. Love & hugs to you Getty, Kate & Mark, especially through your hospital stay. Grandma Nola touches base with us. She and your support team are such a Godsend.
Grandma Evelyn & Grandpa Stump in Temecula embrace you all & the Getty/Kaiser team tomorrow.
We will be sending prayers your way during this.
Rici and Teagan
Thinking of Getty… sending you all my positive vibes!!!! Hope everything goes as smoothly as possible.
Will be praying for a calm and peaceful tonight as well as a successful procedure tomorrow. Hopefully, you’ll all be home before you know it!
We will be thinking of you tomorrow. Looking forward to hearing how well it goes!
We are sending extra prayers to all three of you today – for extra strength, a smooth procedure, and a quick return home!
Mark and Kate,
Our family thinks of you and your beautiful Getty Owl all the time. Positive thoughts this weekend and special prayers for the most beautiful owl with the amazing blue eyes.
Love the Hicks-Haney Family
Mark, Kate and Getty,
We continue to think about and pray for you and wish Getty a speedy recovery.
Much Love from Mike, Michelle, Isabel and Claire