This week

I have to first start by saying that I'm sure that this post might offend those that are reading. This is not my intent nor is it my intent to get apologies from people. I'm not looking to do either of those things. This blog is for me to have a record of my feelings....sadness, frustration, guilt, joy, agony, heartbreak, the list goes on. I've debated starting another blog just about my new journey since Dylan's death. I actually have one created. I guess this is part of our family's story and at times I feel like it belongs here.

This week has been extremely difficult. As each week goes by, it's another reminder that Dylan is gone and it's getting longer and longer. I have thought what it is going to feel like when the time comes that will surpass how long we had Dylan with us. I know that's years ahead, but it's terrifying.Oh how I miss my sweet boy.

Our dear friend, James, put all of our videos from the camcorder tapes onto DVD's for us. I got enough courage to watch some of the videos yesterday. It was bittersweet watching them. I LOVED being able to see him and hear his vocalizations and laugh. I miss him kicking his legs in his chair. I miss seeing him "chill". I miss seeing him play. I miss his therapists. I miss our routine. I miss the stability or instability(depending on Dylan's health) of our schedule. I knew what to expect. Watching the DVD's yesterday made me realize how different I had become since becoming Dylan's mom. In the DVD's Dylan was 2 and Brianna was a baby. It seemed like it was just like yesterday. I wish it was yesterday.....he was here. His smell in his room is fading. It makes it even more difficult to go in there. I still have occasional moments where I think he's laying in his bed. But to no surprise he isn't. At times I feel my brain is crazy. Grief does crazy things to your brain, body and heart. Logical thinking is gone most of the time. I still can't clearly remember things.

People are forgetting. It's been made pretty clear, but to those that haven't thank you. Thank you for the occasional visits, random phone calls, gift cards for dinner, and support. We ate out twice last week. Who does that??? I LOVED not having to cook. Kalen has been a tropper and has helped out A LOT with dinners. I feel especially after he has worked long days at work. We didn't eat out much until a few weeks after Dylan's death. (It has taken us weeks to feel "OK" doing it) Brianna's new favorite place to eat is Olive Garden. She ate all of her meal we were impressed.

This past week, Brianna slept over at the Rogers. She had a blast. While she was over there, Kalen and I went and hung out with our friends, Judy, James and their sweet son Justin. For us it was great being able to see them care for their son, who like Dylan, was dependent on them for everything. I was jealous. They got to hold him, make him smile, change a diaper, talk about the "normal" challenges that come from raising a child with special needs. I feel as if I don't belong in that world anymore. Not because anyone has done anything to make me feel that way but because I don't have Dylan here. To those that still consider me a "special needs" mom thank you. It means so much to me.

Today I went to the Zoo with my dear friend, Stacie and her kids. I saw a family who was giving a "bolus" feeding to their child with a feeding tube. Oh how I wanted to run over and give them a hug and let them know how lucky they are to have their child here, despite the challenges I'm sure they face. Since I'm not pushing around a wheelchair anymore do I even have that right? Of course I wouldn't run up to them like a crazy lady, but I wanted them to know that I too am a "special needs" mom. I KNOW at least can understand what their normal is.

This week has really tested my mental capacity at times. I about had a complete breakdown when I couldn't get ahold of Stacie who let Brianna spend the night with her kids. The thoughts that were going through my head were crazy. Was she okay? Did she die? Did they all die? Oh the horrible the thoughts my mind was thinking. I'm telling you grief messes with all aspects of your life. Although I am grateful for my grief, there are time when I wish it would go away and other times when I am glad I it's still here. Can you believe it's been 10 weeks today? 10 weeks.......if I were to count backwards from when Dylan was alive it was in the middle of March. Things were normal. We had just started adjusting his seizure meds. We were hopeful and glad that we had done the colonoscopy and endoscope for Dylan. It allowed us to ween him off a med that was causing all sorts of problems. I had just run a half marathon and was training for another. Little did I know my life would be so different 10 weeks later and now 20 weeks later. It's crazy!!!!!!! 20 weeks ago we celebrated my nephews 1st birthday. Has Dylan's death put "time" in a different perspective for you? It has for me and my family. I can imagine what life will be like in the next 10 weeks. It will probably be like it has been for the last 10 weeks......long and short at the same time, a blur, periods of severe sadness, grief, despair, a little bit of joy thrown in(I still don't know how it's possible that I find myself laughing at things.....), tears.

One question that keeps coming to mind based on things people have said is that they really think that I'll get over this. Let me just say, THAT WILL NEVER HAPPEN. I WILL NEVER GET "OVER" LOSING DYLAN!!!!! You may see me smile, or be "put together" at different places, but just to clarify I am screaming inside. My heart is broken. My son died. I don't expect people to understand exactly what I am going through, but I am not "Happy".

I still worry everyday what am I going to do when Brianna starts school in a month. I don't have A LOT filling my time. I WANT, I NEED to be around my special needs friend's kids. I miss the "daily" grind. I miss diaper changes, I miss feeding tubes, I miss talking about OT, PT, Specialized Instruction, Music Therapy, Speech Therapy, Vision Therapy, stupid school districts, IEP's, taking on the system, IHSS, Respite (insane workers), Nurses, the list goes on. I need to be involved. Why do I have such a strong feeling that I need to be doing something in the Special Needs Community? I want it to be something that brings about good and is truly helpful. My brain has been trying to work on ideas amidst going crazy.

The other thing that has been bugging me is that our grief counselor suggested that we have Brianna do "intensive play" therapy. I guess I don't see what she thinks she sees. I plan on asking her tonight why she is suggesting that. Most of the time Brianna is "fine". Yes there are bouts of crying, but I have that too. Most of the time she is fine, not like me but understandable.

Well I better go get the black streaks off my face from my mascara that have run down my face due to crying. What was I thinking? I haven't worn mascara in 10 1/2 weeks!!!!