It's been two weeks and two days since you traded in your broken body for what I'm sure must be the most beautiful wings and with each day that passes I miss you so much more! Don't get me wrong, I am so happy that you are free of Sandhoff's Disease and when I think about you I picture you running around playing with all of your friends and loving on Grandpa, but I am still very sad, I miss you so much.
I miss holding you and kissing you. I miss brushing your soft hair and the feel of your soft cheek. I miss caring for you, the sounds of your food pump, your giant yawns and sighs. I miss your beautiful little face and the weight of our head on my shoulder. My arms feel so empty - I feel lost. You know Christopher is a "grown-up" and doesn't need his mommy, I no longer know what my purpose is. I just miss you so much!!!! Sometimes I feel your presence with me, maybe that's just me making things up but I'm okay with that. This week every evening there are two dragonflies that chase each other around the backyard and it makes me think of you playing. Yesterday at lunch, there was a cute little frog on the table display - just little things that always remind me of you and tell me you're not far.
It is my hope that now you know and understand how very much we all love you. I often wondered if you could feel our love or even if with all the damage your little brain had, were you able to understand our love. I don't know how much of that you knew when you were here, but now you can actually see how many people loved you so much. I have had people write me and tell me how your strength and courage has inspired them to make changes in their lives, people who want to continue to raise funds in your name to help cure this terrible disease. You were such an inspiration to so many people, you were brave, strong, courageous and everyone who met you knew it. The kicker is you did all of this without ever saying a word - just by being in your presence people could see and feel your strength. You were an amazing little boy.
I'm hoping that since you now have the ear of God, you could maybe talk to him for me. I'm going to do everything in my power to be sure that I see you again but maybe you could let him know that I'm sorry for blaming him and being mad at him for not listening to me.
When you were first diagnosed I talked to God more than I talked to anyone else and I begged him to heal you. People kept telling me that God heals, just pray and believe, and Becky and I talked about this... as I watched you decline I felt like I wasn't praying hard enough or asking for the right things and she said the same thing then she said it takes awhile to realize that He is listening and he does answer prayers but "sometimes the answer is no". Once I realized that your healing was not going to come while you were with me I focused all that energy on loving you and caring for you. I know that God's answer was not really no, because I know you are healed now.
It was always my goal to make sure that you were comfortable and I did the best I could to make sure that was the case - which was hard. I tried to move you often so that your arms or shoulders wouldn't hurt, but I always wondered if you were hot, cold, hungry, thirsty, did you have an itch that needed scratched, did you have one of my hairs tickling your arm. Your comfort was my job and I feel like in those final moments I let you down.
A couple days ago, I wrote of your passing and how it happened, what it looked like. The day before you left, we ordered your morphine, it was due to arrive Wednesday morning, it didn't make it in time. Doug texted me Tuesday night before he went to bed to check on you and see how you were doing, when I told him you weren't doing any better he said we can call around and find a 24 hr pharmacy and get you enough morphine for the night and I didn't do it - I will regret that for the rest of my life even though I'm not sure what one dose would have done for you. I watched you fight for that last breath and I can only hope that because of the damage to your brain that you could no longer feel pain. I'm sorry, I am so sorry!!!!!
I have so many things I want to say to you but my mind is in a jumble and I can't think straightlove you my baby boy!!!!