Just some thoughts

I wanted to write so I could have a personal record of the feelings I have had since Dylan went into the hospital, died and since then. I decided that I would keep a journal instead of blogging because I figured there might be judgment passed onto me due to my feelings.

But, there are a few things that I wanted to share. I miss my Dylan, aka "Bubba", "Mr. D","Buddy", "Dilly Bubba". I am so grateful for the time we were blessed to have him here with us. I was just starting to think of something we could do to celebrate his upcoming birthday, but instead I am now planning a way to "celebrate" Dylan on his 7th birthday. I can't wait for the day where I will see him again. This I know is true.

Our family is still in shock that Dylan is not here with us. We were not expecting this. Dylan was happy and healthy. He was having increased seizures but we were working on that with his awesome neurologist. We were seeing an improvement in duration and frequency. There was nothing that was "out of the ordinary". Kalen and I keep saying that the night before he rushed to the hospital was a "good day". Dylan was happy and laughed. Kalen and I listened to him laugh for 45 minutes before he fell asleep. I got up with him at 4am and Kalen got up at 6am and everything was "fine". At 8 o'clock that morning, the world that we knew stopped. It has yet to return. I can't believe that at the end of this week, that 3 weeks has passed since I held Dylan, heard his laugh, saw his smile, and had it be "normal". I look at his chair and think he must be in his bed and then I find myself walking down the hall to check, knowing he won't be there. It is the weirdest feeling in the whole world.

Our house is so quiet. It's deafening!!!!! I remember sometimes when Dylan would whine or vocalize extremely loud, I just wished our house would be quiet. Now I wish I could hear him whine and vocalize. Not only is our house quiet since Dylan isn't here, our "normal" routine is gone. There aren't therapists of some sort (PT, OT, Music, Speech, Vision or his teacher) coming to our house. We had one of the best teams for Dylan. My calendar is completely empty on days that were usually jammed packed. What do I do with that????? Especially with Brianna starting kindergarten in the fall. I still want to be able to work in her classroom but I also need something to do with my time. I am already looking at jobs that will allow me to use my Child Development degree and knowledge of raising a child with special needs. I just want to help others that are going through the same things we did. So if anyone has any ideas let me know:)

There are so many feelings that are going through me on any given day. There is nothing I feel I could say or words that can even grasp the depth of our sorrow and grief. I am one of the"first" to lose my child to death. It's hard. I guess one good thing is that I have 2 friends whose children have passed away within the last 2 years. I look to them for advice, support, and questions.
Thanks to my good friend Stacie, I was told about a private blog for mom's whose children have died. I hate to think that I am now part of that group, but it will be comforting to be able to read other's feelings, post what I am feeling, and ask questions without judgment.

I AM a special needs mom that has now joined another group that I so didn't want to join. But I remember when I joined the "special needs moms" group because my sweet boy had "special needs" and didn't want to be a part of that either. Because of my journey and the "groups" I was "forced"(in a way) to join I have met the best people and I am forever grateful for them.