Just writing the title of this post was so difficult. I still can’t believe Amanda is gone. There was so much we wanted to do with her, new clothes I had just bought her, new toys, new ipad games, a trip to Disney, her 2nd birthday, many more getaways. We knew SMA was terminal, but we did not expect her to go this soon. On the morning of Sunday May 13th I woke up at around 6am to the sound of Amanda’s nurse suctioning her, I immediately went to her room and the nurse told me she had a lot of secretions in her lungs and we started her respiratory therapy right away. I went to our room and told Juandi Amanda was in bad shape. Since she had been sick we had to do cough assist and put bipap while suctioning, remove bipap do cough assist and place bipap again for suctioning always with oxygen. If we didn’t put bipap on she would just stop breathing. We did the first round of coughs and put bipap on with oxygen to start percussion, she was around 88 and then started to drop fast. Nurse started ambu with oxygen (this is what had always brought her back in the past) but she still kept dropping, we did coughs and suctioned with bipap but there was no response, nurse did CPR while I bagged her, her monitors stopped working because she was becoming cold, I grabbed another monitor and placed it in her finger but it worked on and off. At some point we called an ambulance. I held her head and sang to her trying to make her come back. After about an hour of struggles paramedics arrived. They tried more of the same and tried to give her adrenaline but couldn’t find a vein. They were thinking about intubating but we called Amanda’s pediatrician and he said that after being with no oxygen for such a long time her brain had probably suffered and we decided not to intubate. We realized there was nothing else to do. I held her and rocked her for a long time. Then we put her in her bed, dressed her, prayed and asked everyone to come say their last goodbyes. We put her in her stroller and my brother and sister in law drove her in her van to the crematory.
Since her diagnosis we had been training and preparing ourselves for all the difficult moments we thought would come. We had talked about intubations, about trachs, about bipap 24/7, about morphine when the time came…and we are shocked that none of that happened. I feel like all that preparation, all that training for nothing; we couldn’t save her. I feel like we failed at her first real sickness. We knew what we had to do, and apparently we didn’t do it right. There are so many things that are constantly on my mind about the day she passed. I wonder if I should have taken her to the hospital the night before, if I should have done more cough assist when she was struggling, if I should have called an ambulance faster. I wish I had no regrets about how she passed away but no matter how hard I try all I really think is had we done things differently she would still be here with us. I don’t always believe that God decides when each person goes to Heaven, and this is one moment where I don’t think God wanted her to go; it just happened and we could have changed that.
During April and May I had been traveling back and forth for IVF/PGD. I feel guilty that I left Amanda for so many days and I wonder if her sadness contributed to her getting sick. I also regret not having spent all of her last days with her. I feel like in trying to have another child we forgot about the one we had and ended up losing her. I will be happy to welcome more children to our family, but that doesn’t mean I will feel better about losing Amanda, because one child will never replace another. I liked my life with Amanda and I love the things we did together; I loved to hold her arms and legs and dance with her, I loved to hang her arms from slings and help her play with the Ipad or to paint, I loved bathing her and putting her little duck in her hand and watch as she tried to move it, I loved carrying her from the bath to the bed and watching her happy face as she looked at me, I loved holding and cuddling her for as long as I wanted, I loved to sleep with her in the same bed, I loved to swing with her, I loved asking her to give me a kiss and put my cheek against her lips and watch her smile…and it kills me that I will never be able to do any of that with my future children because they will not have SMA and they will never be Amanda.
Since Amanda’s diagnosis we have been in contact with hundreds of families whose SMA Type 1s children live to be 10+ years. I don’t think we expected Amanda to live that long, but each day we became more convinced that she would still make it to many more days. But the cruel reality is that most SMA children still die before the age of 2, even with all the machines, all the training and all the intervention…it happened to us. I hate SMA and I hate that Amanda fell into the typical SMA statistic and died before 2. We’ve always known Amanda was weaker than most but we still had hopes.
I also try to be positive and think that she is now in Heaven free from SMA. It gives me some comfort to know that she never went through painful things in her life, that she left a baby unaware of her limitations; she left a happy baby. She was very happy here and was showered with love but I have to keep thinking that she must be happier and better now. We are just very sad that she is not here with us. The last time we saw her body before she was cremated Monday morning she looked so peaceful with no machines, no bipap mask and nothing alarming. I told her she had her bunny, her pacifier and that she could now rest (that’s what I told her every night, in addition to see you tomorrow). I also asked her to please come visit us and send us signs that she was still around. She was cremated just like all her nurses and us had prepped her before they took her body Sunday afternoon, with her purple dress, her paci, her bunny, her bow and her blankets. Our home feels empty and quiet and looking at her room without seeing her is so hard…and realizing I will never see or touch her again is even harder. All I want is to hold her and to think that I need to wait 50+ years is just too much time.
Even with all these guilty feelings and regrets I am sure we were the best parents Amanda could have. We gave her everything from love to experiences and I am so glad I have pictures and videos that will keep her memory alive forever.
Thank you again for all your messages and to our friends and family who are keeping us very busy distracting us.
Day before she passed. Fell asleep during therapy.
Ready for bed the night before she passed. I was so happy she was doing good.
Last picture I took of her. Last book I read her before going to sleep. Loved to put her little hand on my knee and feel her fingers moving.
. She wasn’t too happy but after a few snuggles and Nemo she forgot all about it.
