There are some many things I thought I'd never do in my lifetime....bury my child would definitely be one of those things. It seemed like the longest ride of my life when we went to finalize things today; my arms were empty and aching, my heart broken. I hope the arrangements we made will honor our son. How sad that we have to make such decisions in the middle of our grief. I'm so happy that our chaplain from the hospital has agreed to do the service for Eli. I feel that someone who shed tears with us is the best person to do that for us and him.
Life has been very hectic for the past few weeks; we have had countless visitors, phone calls, emails... I know this will all end and when it does, we will find ourselves with too much time to think and cry....and remember all that we have lost. I know we are in shock and numb. I do cry but I feel like I must stay strong for now; I prefer to have my breakdowns in private anyway. Jason has very strong, comforting arms and I can't think of a safer place to be when I cry.
Jason said the house was so quiet; too quiet this morning....so quiet you could hear the coffee brewing. Eli had not really been able to cry or "talk" to us for the past week, so we had lost all the noisy joy he brought to our lives. I remember days when I longed for silence....now I yearn for it. I had days where I wanted nothing more than for Eli to stop crying; now that he has I'd give anything to have it back. We never know what little things we'll miss when we lose someone close to us. Everyone has those little things they do that we may not notice until we never see them again. Almost every night we'd wake up to Eli crying; he loved going to bed swaddled but would somehow manage to get one arm out and wake himself up. It brought us many smiles; we almost knew what to expect when we heard the cry. I miss that.
Jason and I went to meet with Eli's pediatrician tonight. He was hesitant to meet with us, not knowing why we wanted to talk to him. I'm sure he expected the worst; blame or anger. We merely wanted to thank him. He always showed so much concern for Eli, but also for me. I remember on the first visit he checked out Eli but before we left, he asked how I was and how I was feeling. I don't blame him for not figuring out what was wrong sooner. I'm glad that he's unfamiliar with SMA; if he knew about it, that would just mean more families would have been through this hell. I hope we conveyed our appreciation and that he went home and hugged his kids tight.
To our friends.....please don't feel like you have to keep your children away from us. We know the joy they bring to your lives and we do not begrudge you for that. I'm glad you've never been through this; I'd hate for anyone I love and care about to EVER have to deal with losing their child. It is like no other pain. Don't hide them from us. Seeing them smile helps us remember all the good times we had with Eli and forget some of the bad.
Sorry this is random tonight; I just had many thoughts today and they didn't want to come together in any form that made sense. My mind is just tired.
I was asked for an organization that helps fight SMA so that donations could be made in honor of Eli... Families of Spinal Muscular Atrophy does a lot to help with research, so if you want to help fight this horrible killer, please consider donating. We would be honored for anything donated in Eli's name, whether it be to SMA research or the Ronald McDonald House.