Gwendolyn DeBard Strong
October 4, 2007 – July 25, 2015
Yesterday morning our courageous butterfly peacefully left this world.
She’s gone. Our sweet, beautiful, adventurous girl is gone. And we are devastated. We always knew we would lose her to SMA, but we were never prepared. No one is ever prepared.
We are going to miss her so much.
We already do.
But we are grateful. We know we are so fortunate to have had Gwendolyn for 7years and 9 months, to have been able to give her so much, to have seen her so joyful, and to have experienced so much life with her. We are filled with gratitude for that time. For all the many memories that we know will now carry us through.
We also find comfort in Gwendolyn’s peaceful passing. It was what we had always hoped for her.
Gwendolyn has been struggling with ANS storms the last month. It wasn’t all bad days, there were many fun and special moments these past weeks. And we really thought she would come out of this storm. Just two Sundays ago we had a wonderful day swimming together as a family. Gwendolyn felt so magical and imaginative in her new mermaid tail. We stayed in the pool for ages and she was bright and animated, shrieking with glee at Daddy pretending to be a shark. Last Monday she squealed with delight seeing all the books at a small library we had never taken her to before — and she happily checked out several chapter books that she enjoyed reading all week. And last Wednesday she was stable and strong enough to go downtown, she did a little shopping on State Street, and had lunch with her teacher, Kara, and school nurse, Tina. They had a wonderful time and it was her first trip without mom or dad. This is something we would have never allowed if she seemed too weak. I met up with them at the downtown library and she was beaming with pride and independence — she even whimpered when she saw me and said, “I don’t want to leave yet, Mom.” We didn’t leave. We stayed and read any book she wanted.
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But there were days that were really hard for her. They often came on out of nowhere. Last weekend we planned for her best friend Miabella to come over. Gwendolyn was so excited all morning with big plans to go outside under her tent, do crafts, read together, and play games. Just a few minutes before Mia arrived Gwendolyn spiked a fever, went pale and was very lethargic. She and Mia stayed inside and talked. Mia was very understanding and held Gwendolyn’s hand as they watched shows on her iPad — that was all she felt up for. After dozing off for a bit, Gwendolyn woke up more perky and they made some crafts. And when I walked back in the room from the kitchen, the two of them were dancing to fiesta music and saying all the Spanish words they learned together in Spanish Camp last summer.
On Sunday we got out for a little bit as a family. We actually took her to see an accessible house we thought would be a good fit for our family. She had fun exploring it and looking at her potential room. Seeing the backyard and the beautiful view. She was comfortable and agreeable during this, but it was short and she didn’t want to be out too long. By Monday she really didn’t want to do much but watch her iPad. She enjoyed cuddling to read some of her new books but even that was taxing. She wasn’t herself and we knew she was getting tired.
She wasn’t sick and she wasn’t fighting anything — we took her to the doctor and had labs and x-rays done all week and they all came out as clear as they could be. But Gwendolyn kept having fevers. And she never had fevers — even when she should. We always felt it was because her pain tolerance has always been so high. There was no specific reason she would be having fevers now except this was out of her body’s control.
By Thursday I think I just knew. I was still really hopeful but she just wasn’t her sparkly self. She really only had the energy to watch her iPad or read an occasional book. Bill and I were still hoping her body would stop storming but we just didn’t know how to get her out of it. We did all we could to help her with that and all the things that had worked before just weren’t working this time. She was growing anxious and really tired. We have always known that exhaustion was her weak spot. She worked so hard because of SMA that when she was too tired it made her vulnerable. And she was very tired now after four weeks of such intense waves. Thursday night was really bad. She was uncomfortable all night and couldn’t rest. She wanted to but her body wouldn’t let her. I stayed in bed with her and held her hand for hours and that usually always calmed her, but this time she remained restless. Bill was up and down adjusting things or altering whatever he could. Her sweet nurse Alby, rubbed her head the rest of the night and that brought her some comfort.
Friday was a mixed day. She had a low fever off and on and that took a lot out of her. But when she wasn’t fevering she was brighter — giggling and singing along to her iPad. She let daddy curl up for a longer than usual snuggle and some kisses. And at one point while I was snuggling with her while she watched Sesame Street a song came on with “Never Give Up” in the chorus. She looked at me with a minxish twinkle in her eye and said “NEVER GIVE UP.” in her usual positive, uplifting way. We sang the song together and held hands. I was so hopeful. She seemed so bright.
Her pediatrician came over early Friday morning. He started her on antibiotics — even though there was nothing to point to. We just wanted to get her comfortable and help her fight. Within minutes of giving the antibiotic she fell asleep. It was much too soon for the antibiotic to have really done anything. I think psychologically it helped her, which allowed her body to rest. She woke up fevering again so later that evening we also gave her a beta blocker to help fight the storm. Again, almost immediately before the medicine was really in her system, her heart rate went down and she relaxed. She slept well for a few hours and we were so encouraged. We definitely went to bed thinking she may be heading in the right direction.
Her nurse Evelyn, who has been lovingly caring for Gwendolyn since she was 6-months-old, stayed with Gwendolyn that night. Evelyn always calmed Gwendolyn and we were so glad she was with her. Around midnight Gwendolyn woke up restless. This time she didn’t have a fever. She just couldn’t get comfortable. About two hours later she could no longer keep her oxygen up and she told Evelyn to get us. Evelyn immediately got us.
When we ran in the room and Gwendolyn saw us her worried searching for us look faded. We held her hands and encouraged her. Told her how much we loved her and how proud we were of her. How smart and beautiful and kind and silly she is. And she heard us. For a few minutes we thought we could turn it around. That she could pull through. But this time it was different. Even though she was struggling to breathe, even with her BiPap and oxygen at full blast, she was calm and focused intently on our faces.
She looked at us without fear or worry.
She looked in our eyes asking for permission.
We knew she was ready. We knew.
We told her it was okay to let go. That we will always love her. Her gaze softened. And we felt a peacefulness run through her.
We talked to her the whole time and told her we will always be proud of her. We talked to her about all the special people who were waiting for her and ready to dance. I sang to her and Bill talked to her softly. We held her hands and rubbed her hair. And reminded her what an amazing gift she has always been.
She was so incredibly calm.
She never struggled.
We hugged her and kissed her and held her and talked to her until we heard her heart stop as she slipped peacefully out of this world.
In true Gwendolyn fashion, even her death was on her terms. If death can be beautiful, Gwendolyn accomplished that.
Gwendolyn will always be our courageous butterfly. In her 7 years and 9 months, Gwendolyn taught us more than we could have ever imagined possible for a child. She was wise, she was silly, she was true to herself, and she showed us how to be brave.
Gwendolyn defined NEVER GIVE UP. — even in her passing. She was simply ready.
Thank you for loving our little girl. Thank you for celebrating in her life. Thank you for always lifting us up and cheering us all on. We are humbled to know how many lives she has impacted. We are honored to know she gave courage to others to live more adventurously, to overcome obstacles, to NEVER GIVE UP.
We know Gwendolyn’s passing is not only our loss — all those lives she touched are grieving right alongside us. This will be difficult. This will take time. But we know she will continue to guide us — just as she has from the moment she was born.
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We will have a public memorial service to celebrate her life next Sunday, August 2, 2015, at 3:00pm in Santa Barbara. Click HERE for service details.
In lieu of flowers, we ask that you make a tax-deductible donation to the Gwendolyn Memorial Fund, created as part of the Gwendolyn Strong Foundation. We plan to do something very special to honor her legacy. >> www.GwendolynFund.com