It has been very difficult to get out of town in the last few months. Mark and I have always enjoyed sneaking away for a weekend here and there in order to just break from the routine of life, see new things, and relax in a different environment. We were able to get away this summer briefly for a few days to take Getty and Cooper to San Fransisco. It was wonderful to find a dog-friendly beach for Coop to run his legs off and for Getty to see the ocean for the first time.
We have been so incredibly consumed with Getty’s SMA that we simply didn’t know when would be a good time to sneak away. We hadn’t given it much thought and we also were not sure if Getty’s health would be compromised if we did. So last week I looked at Mark and said, “we need to get out of here!” For both of our sanity we need to breathe and relax. So here we are in the Railroad District of old Santa Rosa.
The moment we got to the room, we laid sweet Getty on the bed. She just giggled. It is far fluffier and bigger than our bed at home. She looked at us as if to say, “where are you guys going to sleep?”
The Railroad District is adorned with Peanuts character statues. Charles Schulz, in his later years, lived in Santa Rosa and there is a museum in his honor we will be checking out tomorrow. I have always been a huge fan of all the Peanuts characters. Snoopy and Woodstock have always been my favorite cartoon characters. I was hoping to get out this way so Getty could see all of them and perhaps enjoy them as much as I do.
This trip was made possible thanks to a couple of things: a car bed and a stroller. The car bed was loaned to us from Families of SMA (FSMA). Getty is no longer able to safely use a regular infant car seat. The contour shape of a regular car seat cuts off her airway and causes her to gurgle on her saliva. The car bed allows Getty to safely and comfortably lay down in the car. I rode in the back with her on our way to Santa Rosa and I felt a bit envious as she looked so comfy and snuggly in her car bed. She fell asleep almost immediately and remained snug as a bug until we got to the hotel. Thank you FSMA for being so thoughtful, we certainly appreciate it.
We were also given an unbelievable gift from one of Getty’s guardian angels. An anonymous person gifted us a new stroller. This stroller has the ability to recline and fits the shape of Getty’s little body. She is so comfortable and she is so much more happy when we get out. Earlier we were getting to the point where we were reluctant to go out in the old stroller because we knew she felt restricted. Since the previous stroller was actually just a frame to hold the removable car seat, it restricted her breathing, contributed to her gurgling, and she just looked miserable as it was hard on her posture. For the person who purchased this stroller we can’t thank you enough. You have given us peace of mind and that, in itself, is so precious to us. Knowing that Getty is protected from the elements and at the same time surrounded in comfort and safety is just amazing.
We have really enjoyed catching up on some great family time and on some much needed sleep. We have enjoyed just being in the moment and enjoying each others company and making memories.
PS: The plastic cover on the stroller is a rain shield.
We wanted to share an absolutely beautiful song that was written and sung by Robbie Rosen. “Make it Through” is a fitting tribute to a little princess, Miss Sophia, who shares the same SMA Type I diagnosis as Getty. Her family is such an inspiration to Mark and me. We continue to lean on them for advice and strength.
We encourage you to watch it and share with others.
Thank you to Vincent and Catherine Gaynor for incorporating other sweet babies and their angels in the video.
Here is a link to their Sophia’s Cure Foundation in honor of their sweet Sophia:
When Mark and I received Getty’s diagnosis we knew that life as we knew it would never be the same. We had no idea what that meant at the time. I mean how could we, our wounds were still so raw with the realization that we may have limited time with our beautiful daughter.
As the past three months have been moving along, we are finding that our lives are slowly moving to a new normal. True, life as we knew it will never be the same, but we resolved with the notion that in time things would slowly start to change and that this journey would be windy and complicated but for the most part we could remain kind of doing things as usual. Boy, I could not have been more wrong.
A new normal is created every day. What I thought I could trust and control just changes the next day. I made my usual phone call to Mark today at lunch with just a quick check on Getty and to see how things are going. It gives me a chance to hear little Getty in the background and it helps me get through the rest of the day. Today was a different phone call. Mark let me know that he was taking Getty to Kaiser because she was coughing more frequently with each feeding. The nurses felt that the next step would be to get an NG Tube. My heart was just crushed. I cried immediately and I couldn’t stop crying. I stood there in my room just trying to figure out what our steps were. Does this mean that she is loosing her ability to swallow forever? Is this temporary? I was full of mixed emotions and I just needed to get to her.
The appointment was scheduled for 2pm, so I just needed to compartmentalize for an hour and a half. So that is exactly what I did. Class went on as usual and then I was racing to the car to get to Kaiser. On the way there I was overcome with emotion. The only thing I could verbalize to myself was, “can’t we just get a break?” Is it too much to ask to give Getty a moment of peace? Would it be that much to request that Mark and I could have a moment with our precious Getty and not have to worry about fighting doctors, or overwhelmed by work, or the unrelenting pressure of SMA? At that moment I just wanted a break.
Getty, Mark, and I were reunited at Kaiser for the third time this week. We met the doctor and she was just great at explaining to us the in’s and out’s of taking care of the NG Tube. Taught us how to troubleshoot, how to make sure the tube is in place, and basic care. She put the NG Tube in Getty’s left nostril and slowly moved it farther down into her stomach. Getty was an absolute trooper. There were times in which she got a little uncomfortable and then just as quickly it was replaced with a bright smile. She kept looking at Mark and I with this immense sense of calmness, as if to relieve our own anxiety.
The appointment went on for at least three hours. We got a chance to do one feeding and Getty seemed to do okay. We now know that we have to feed her less but more frequently. We need to encourage the bottle feed until she tires or if she continues to cough. We need to continue to encourage her to use her paci as well. That will help her maintain her mouth muscle strength. A new normal.
We were just about to leave and the receptionist let us know that we had guests in the waiting room. Who knew we were here and who would be waiting for us? I left Mark and Getty in the room with the doctor and I walked out to see who was here. I turned the corner and saw two incredible friends standing there ready for hugs. I needed hugs, I needed to talk about what we just learned, I needed to be heard. T and Takoa you both are just true friends. I don’t know how else to say that. How am I ever going to repay the love that you give to Getty, and my family. I can’t tell you how comforting it was to turn the corner and to see you both standing there. You are our angels.
So our normal is not normal at all. In fact it is the opposite of normal and I think this is just the way it will be. What Mark and I truly have control over is the amount of love and devotion we have for our Little Getty. Rest assure we are making sure she has all that she can handle and want in every second of every day.
Mark, Getty, and I had a really busy weekend. It was an equally busy weekend for our entire Team Getty. The love and support of family and friends has made all of the difference for Mark and I. I know that all of you are so incredibly tired and I hope that you have been able to recover in these last few days.
So what happens when you put the smartest, most hardest working, compassionate, and might I add strong women into a room at San Juan High School? You get the most successful Rummage Sale in history!
Saturday was an amazing day. Team Getty has been planning this sale for the past two months. They organized all the donations, advertised to the community, feverishly baked, coordinated all the logistics and most importantly, gathered and empowered students to help out.
Eileen, Patti, Trina, Debbie, Robin, Shannon, Shelley, Angie, and Cindy thank you on behalf of my family. You all worked tirelessly to make sure that Saturday was a success. It was raining, it was early, and there was so much stuff that I thought how on earth will all of this be ready? But there you all were at 5am in the morning running around making sure that all the details were taken care of. People flowed in and out the doors all day. The mood was celebratory and spirits were high. Children were getting their faces painted, families were finding good deals, the beautiful sounds of an acoustic guitar was being played by one of our students, and the sense of community was present. It was an honor to be there.
Right before I left, I was stopped by one of our students. She looked at me with such intensity. She said, “thank you for letting me be a part of this day.” Thank me? I corrected her and said, “no sweetheart, thank you.” She gave me a hug and swiftly ran back into the cafeteria to continue helping. It was so sweet of her. I think perhaps she may have realized that it feels good to help others. What a great lesson to learn as a young adult. Team Getty, you helped her realize that. Yes you planned an awesome Rummage Sale for the benefit of our daughter, however at the same time you taught tons of kids what it takes to help others and those lessons will be everlasting. You have mentored them to see outside themselves and truly understand how amazing it feels to help and volunteer their time for a cause. I was touched by watching all of our kids assisting people in our community. I enjoyed watching them engage in conversation with adults, I loved watching them help older individuals that needed assistance, my heart was warm when I saw our kids actively explaining what SMA was. Life long lessons that our kids will have forever, thank you all for letting them be a part of Saturday.
So successful it was. The total raised was approximately $3ooo. Awesome! Awesome! This will go into the Getty Owl Fund and used for upcoming medical costs. Every dollar raised is giving Mark and I peace of mind that when we need to pay for medical needs, they can be taken care of.
Sunday was a true adventure. After staying in Berkeley the night before, Mark, Getty, Mom, Dad, and I headed down to San Fransisco for the Northern California FSMA Walk-n-Roll. We have been looking forward to the walk for some time. We have had the pleasure to meet a lot of families on-line and this was going to be our chance to finally meet face to face. Unfortunately mother nature had other plans for us. Mark and I decided that the unrelenting rain would obviously compromise Getty’s health. So daddy and Getty stayed back, while the rest of Getty’s warriors braved the cold and the wet to walk in her honor.
Thank you Takoa, Kathy, T, and Diane for braving the crazy weather without jackets, mind you, and walking for Team Getty. Your Team shirts were amazing and I was just so touched that you came all the way to walk for Getty. Your support is so incredible and so appreciated. To the Barbarino’s that brought their little bambino, Aiden to walk with us. You didn’t have to drive all that way just to walk with us, but you did and we are so thankful that you did. I didn’t know that rain could fall sideways, but you guys seemed to not even let it bother you and I thank you for your support and good spirit. We got a chance to take a Team Getty picture, a memory we will have forever. Thank you friends. With all of the crazy weather, it was impossible to meet other people. We were all so bundled up, I couldn’t recognize any new face in the crowd. Perhaps next year, when the weather is better, we could have stayed and met more families that day. All in all, Team Getty was able to raise just over $1,000 for FSMA. Thank you all for donating to such a great organization. they comfort families in need, they give money to much desired research, and they help raise awareness. I know our Team Getty donation will go to good things.
We were able to also walk with a very good friend of mine. Krista and her partner, Kris and the Gulbransens, were in attendance for the walk and they also graciously opened their home to us for lunch. Krista you and I have known each other for about 8 years. I feel like within this past year we have grown even closer and I am so thankful for that. Your friendship is precious to me and I can’t think of another person I would lean on more for advice and support than you. My only regret is that we don’t live closer. Getty loves her Auntie Krista. I wish we could have stayed longer on Sunday so that you could have had more time with little Miss Getty. As Mark, Getty, and I continue on this journey, your strength and friendship gives me confidence as Getty’s mommy. You always seem to leave me with some lesson to think about and ponder. Thank you.
Mark and I both love the fall weather. The changing of the leaves and the brisk air are welcome changes. However now it is taking on a whole new meaning. Colder weather means colds, coughs, sniffles, and the flu. All things that have the potential to compromise Getty’s health. We are taking every precaution we can to keep her immune system strong. My weekday routine after work starts with a shower to rid myself of any and all germs acquired at work, brush teeth, in the hope that I have not brought in anything. Once a new set of clothes are on I quickly run to my little one to catch up on kisses and hugs. I noticed a little congestion in my lungs Monday and so now my routine has added gloves and a mask. It is a temporary measure, but it is worth it. You should have seen Getty’s face when she saw me wearing a mask. She started to cry when she saw me, but when I started to speak I think she figured it out. Now she just seems fascinated by the squishy gloves and blue mask.
Getty has been a bit fussy lately. Not her usual self and I think my Mom might has figured it out. Little Missy has two bottom teeth coming in. I think Mark and I have been some overwhelmed by the diagnosis and the constant battle with doctors that we unfortunately lost sight of life itself. I was getting so freaked out that I would bring some sort of sickness home that I completely forget to embrace her little, but amazing milestones.
I put my finger in her mouth and moved my finger along the bottom of her mouth and wouldn’t you know it, two little teeth. They are the sweetest little teeth, I tried to take a picture of the little nubs but they were just too small. How very exciting this is, soon enough we will have a whole mouthful.
Monday we celebrated Getty’s 7 month birthday. As I write this post, she is laying next to me and looking at the way I type. She is so beautiful and she is just my little girl and I am always overcome with emotion when I look at her and think of her. She is the best thing that has happened to Mark and I. What an absolute gift she is to all that meet her.
So that is how our weekend ended, surrounded by family and friends. Yes it was exhausting but so incredibly worth it. Thank you all for helping us gain some security in a very inconsistent situation. I know you all had to sacrifice precious time with your own families to help us, we thank them for their understanding.
Nola, when Kate and I married, you welcomed me into your family with open arms. We have shared may good times, and I always enjoy your home-cooked meals. I look forward to our annual trip to Mt. Shasta so very much.
You were there within the hour of our receiving Getty’s SMA diagnosis. You were there to learn and support when David Serini of FSMA came to our home to help us with the new diagnosis. You have been so wonderful coming to our home to help the family twice a week and even more. You have been so supportive with the fundraisers and many other things.
Thank you so much for your love, kindness, support, and dedication. You are such a wonderful mother, mother-in-law, and grammy.
We hope you had a happy birthday!
Getty, Kate, Mark, & Cooper