Sleep is eluding me yet again tonight.... I woke up about an hour ago in the middle of a dream. In that dream we were preparing to lose Eli. I am so glad that I woke up; I can't imagine surviving that loss again, even if it was just in a dream. You should only have to say those kind of goodbyes once; it would seem that any more than that would destroy the soul.
Today I realized how special the love between a parent and child really is. I have been honored to hold two other babies over the past few days. It was so nice to cuddle and love on them; they were both quite adorable. However, the emotions I felt while holding them were so pale in comparison to those I had when holding Eli. The contrast knocked me for a loop I guess. I always knew I loved my little man, just not the extent of that love. It is like nothing else in this world. Unless you have held your own child in your arms, you won't know what I'm talking about. That kind of love changes you. I watched myself change so much while Eli was in the hospital. Perceived threats brought out a primitive need to protect, much like that of a mama bear with her cub. I turned into a strong person, one willing to stand up and say No; not just one No, but no time and time again. It would have been a strange sight to many of those who know me; sometimes I did not know myself.
Yesterday was one of the numb days. I didn't cry much, didn't laugh much, was just here, breathing. Some days breathing is a big accomplishment, getting out of bed a chore, showering an impossibility. Each day brings a new set of challenges, new feelings to overcome and work through. A very special friend of mine spent hours upon hours putting together a video for us using our pictures and home videos. We watched it last night and it was beautiful. He managed to capture so many of the fun moments and happy times. It was bittersweet to watch it; we laughed and cried. It will be a special memory we can come back to on those tough days, on days we just need to see his smile, or on those days when we feel like his memory is starting to fade.
One thing the video brought to my attention is how the SMA was apparent even in the early beginning. Of course we had no idea at the time, but I noticed over and over how many signs he had long before we had any idea something might be wrong. Holding and watching other little ones was a shock to me too. I always knew he was way behind in development; I just never realized how far. It makes me sad even now that he was denied movement and strength; that he was never able to do all the things babies do, all because of a loss of a gene in his DNA. I can't even strike out against this killer; it is too microscopic for me to even see; yet so large that it was able to steal away part of my heart and soul, large enough that it robbed me of my son, plus any siblings he may have one day had. How can something so minute take away things so great?
I have lost much of the strength that has carried me through most of this journey. The resolve to do all the great things to keep his memory alive is a little weak right now, but still there waiting to come back out. I need time to grieve, but I can't let myself get stuck there for too long. We received more donation acknowledgements from the Ronald McDonald House yesterday. There was another one in there from someone I didn't know personally. I hope that means that Eli has touched some of you; that his memory and story compelled you to reach out and help those that helped us. Thank you for that. Thank you so much.