I miss Dylan so much. It's so strange that he isn't here. Today it's been a month since Dylan died. Everything is still surreal and strange. Half the time I don't know what I'm feeling and then other times I am so sick to my stomach. I'll cry at the smallest things. (Today I checked on Kaiser's website to cancel some upcoming appointments he had scheduled and started crying when I saw he was removed from the authorized list and only saw Brianna's name).
I wanted to make a list of what I miss. So here it is:
1. I miss watching him and Brianna interacting.
2. I miss his SMELL
3. his HAIR
4. his SMILE
5. his LAUGH
6. the way he'd scrunch up when I'd pick him up
7. the occasional head bunts to my head(since he didn't have the best head control or he was just trying to see me better)
8. Lifting him
9. dressing him
10. changing his diaper (those that know him know how funny he thought that was)
11. feeling his weight while I held him
12. changing his shirt multiple times a day
13. getting annoyed with him pulling out his feeding tube while it was on, him laughing about it
14. his feeding pump
15. the sound of the motor on his bed(we've haven't touched anything in his room)
16. having supplies arrive
1. I miss watching him and Brianna interacting.
2. I miss his SMELL
3. his HAIR
4. his SMILE
5. his LAUGH
6. the way he'd scrunch up when I'd pick him up
7. the occasional head bunts to my head(since he didn't have the best head control or he was just trying to see me better)
8. Lifting him
9. dressing him
10. changing his diaper (those that know him know how funny he thought that was)
11. feeling his weight while I held him
12. changing his shirt multiple times a day
13. getting annoyed with him pulling out his feeding tube while it was on, him laughing about it
14. his feeding pump
15. the sound of the motor on his bed(we've haven't touched anything in his room)
16. having supplies arrive
17. Holding him
18. His whine
19. Having to wake up for a purpose in the middle of the night
20. Hearing him in the morning
21. Hearing him kicking the sides of his bed and laughing about it
22. Seeing him close his eyes after we said goodnight and turned on his aquarium
23. Listening to "his" music...Bessie, Greg & Steve, jazz
24. Brushing his teeth (hoping he wouldn't gag and spit up all over the place)
25. Various therapists and teachers coming on a daily basis.
26. Knowing what to expect each day
27. The smell of his special formula
28. Giving medicines
29. Talking with his doctors
30. Getting equipment he needed
31. Seeing him in his chair
32. Having to tell him constantly not to bite his fingers.
33. Seeing the callous on his fingers from biting on them
34. Seeing his excitement when his teacher would come to the house
35. Laying next to him and wondering what he thought
36. The movement of his arms and hands
37. The way he held his left arm
38. How he would light up whenever someone he knew was around him
39. HIM
40. Learning unconditional love from him
41. Dealing with "the system"
42. Fighting for him on his behalf
43. Watching him get so excited when Kalen got home
44. Hoping he wouldn't hurt his feet from all the kicking he did while in his chair.
The list goes on but I am trying to type through A LOT of tears. I never feel like I explain well enough how intense I miss him or what we are going through. He is such a special boy. His sweet presence is missed so much in our home. To me the world is a lot less happy without him here in it, because he could and would always make me laugh.
.......I long for the day that we will be together again......
I haven't told you what I think of when I think of Dylan, so I can at least speak to that.
ReplyDeleteWhen I think of Dylan, I don't think of him in a wheelchair. I think of him, and picture him clearly, sitting and laughing like a 6 year old goofball while watching the rest of us dance. I see him dancing with Kalen and collapsing with laughter. I see him climbing on top of the playhouse, throwing the whiffle balls, and eating too much cake. Honestly, since his funeral, every time I think of him, I think of him the way he will be when you see him next.
I think you should write down any and all memories you have of your sweet boy. Share him with us. This list, although painful to read, is beautiful and gives us insight into the sweet, goofy kiddo he was.
ReplyDeleteI'm saying prayers for you and your family.
HUGS!
I think of you often and have kept you and your family in my prayers. I think the knowledge that you will see him and be with Dylan again is a blessing.
ReplyDeleteThis post brought tears to my eyes.
ReplyDeleteFrancesca,
ReplyDeleteYou have been in my thoughts often over this last month. I can't even begin to imagine the loss you have experienced. As I read your list I think of all the tangible ways that your sweet boy was in your life. There is full about the way you describe what you miss. I am glad that you have had the amazing opportunity to be his mom. What a blessing to be so involved in another human and have your life so full.
At the same time I think of a strong healthy boy watching over you and your family. He has the power to lift you emotionally the way you lifted him physically so many times.
Families truly are Forever.
and you will Francesca! You will see him again. This I strongly believe in. There will be no more wondering what he is thinking the day will come when you can ask him and he will answer.
ReplyDeleteReading your posts are so terrible and yet so beautiful. I remember it all too clearly...I promise you that the stabbing pain will ease into stings. Don't stop feeling or thinking anything though, even the crazy, scary, painful stuff...its all part of the process, and someday, it will be sacred to you, even though right now it just hurts like hell. Someday it won't hurt to breathe.
ReplyDeleteDylan sounds like an incredible kid.
~Bethany
I have no idea what you are going through and most people never will, just like most people had no idea what it was like to be you, as a special needs mom. I work with special needs kids, and followed your blog to see what it was like for the parents. You got frustrated, and happy, and laughed, and tired of Dr.'s Appts, and had a great time with your son. You will be so grateful for this blog and documentation of Dylan's life and that you expressed your real feelings. I am so sorry that this happened to you and i don't think that there is anything that I can say. You have expressed yourself so beautifully here and I appreciate you sharing this part of your life with us, You are going through every parents worst nightmare and letting us know that you can get through it.
ReplyDelete