A month in and What I miss

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

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......

Things I've learned lately

1. People will "ALWAYS" ask how I'm doing, even though they know Dylan passed away. Do they really think my answer will be "good"?

2. People won't talk about Dylan. I can't figure out why.

3. Grieving SUCKS!!!!!

4. I miss Dylan so much. Our family just doesn't feel the same.

5. Tomorrow will be 1 month (6/29/2010) since Dylan died and my world hasn't restarted.

6. It hasn't gotten any easier.

7. People think that I'm strong and amazing but I don't feel that way.

8. Some people are so rude and inconsiderate.

9. I feel privileged to know the Rogers family.

10. "Just Dance" on Wii can keep sadness away for a few minutes.

11. Family relationships are now more meaningful. And it's frustrating when others don't see that.

12. People have forgotten the value of relationships and harbor ill feelings for bizarre reasons. This is hard for me since death can and will happen to everyone. All I can say is "get over it and truly get to know others around you".

13. I worry more about Brianna and Kalen. Nothing bad can happen to them right now.

14. People have no idea what it's like to lose a child unless they already have lost theirs.

15. I still am a "special needs" mom.(thank you to my "groupies")

16. Dylan's death is a big fat elephant in a room that some don't want to acknowledge. Why is that?

17. Brianna loves playdates. This is a new concept for us.

18. Some people honestly have NO tact.

19. I'm still on "Dylan" time.

20. I still will ask Kalen if he can go check on Dylan.

21. I still go and attempt to get the wheelchair out of the back of the car when going somewhere.

22. One of my new favorite places to go is to the cemetery.

23. My 4 year knows the word casket and what exactly it is.

24. Dylan's death has brought me and Kalen closer. Love you!!!

25. People's lives have gone on like normal but ours hasn't.

26. Birthdays are now different.

27. It's hard seeing boys.

28. I wonder often if people think about Dylan and what they think about.

29. When my head hits the pillow I instantly fall asleep. I'm emotionally, physically, and mentally exhausted.

30. I want to be the best person I can be so I can spend forever with Dylan.

31. Each day that passes is one more day closer to seeing Dylan again.

There are so many more things but I have a pounding headache from too much sun today. Maybe I'll share another day.




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Today is my birthday

Should I be happy with this? Not sure how "happy" today is going to be. I am going to try, but it's going to be hard.

4 weeks

Today has been 4 weeks since that dreaded day. I am so overcome with feelings. The tears won't stop today.


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Today

I am grateful for playdates. Thanks Nicole, Mia and Jace!

Dylan's story

My heart is full, but broken at the same time, if that makes any sense. I've been trying for weeks to bring myself to write this post. Partly so I'll have a record but to let those that want to know "what happened" know as much as we do.

So let me start at the beginning. Dylan was born in July 2003. He was a huge baby, weighing 10lbs 6ozs and 22 inches long. He spent the first week of life in the NICU. That was hard. Little did I know that it would be way harder at the end of his life. Dylan didn't come with an instruction manual. The book, "What to expect", was thrown out the window. We would learn as we went. Our family was blessed with a great team for Dylan. We eventually got a great neurologist. Dylan's infant team, helped in so many ways. We met a lot of other "special needs" families. It was nice to not feel so alone. We tried school for Dylan when he turned 3 and he hated it. Till this day I still don't know why. I guess I shouldn't say he hated it, he just had a really hard time. When he turned 4, we decided to give a Home Hospital program a try. We struck out with the first two teachers the school district sent, but we found Dylan's awesome teacher and have loved her ever since. (As I type this, she is finishing a project with Brianna that she had started with Dylan 2 days before he died) The past few years have been awesome with the great therapists that have come to our home and helped Dylan and me as well. I am so grateful for those relationships.

So fast forward to Thursday, May 27th. It was like any other day. Dylan was happy so that meant we were happy. We had his teacher coming at 4 pm, Brianna's open house at the school she'll be attending in the fall, and laundry to put away. Dylan hung out with our friend Erika that evening while we went to the school. When we came home we hung out and then put laundry away. You are probably wondering why I keep talking about laundry. I absolutely HATE putting away laundry so Kalen helped me put it away. We could hear Dylan "chilling" in his room, in his favorite place, his bed. He then had the biggest poop known to man. Dylan thought it was the funniest thing ever. He LAUGHED for 45 minutes. I am so grateful for those 45 minutes. That is our last happy memory of Dylan. If you didn't know him, he had the best laugh and smile.

So what happened? The coroner put on the death certificate Asphyxia, Seizures, Cerebral Palsy. For us it still doesn't answer the question. On Friday morning, May 28th, I got up with him around 4am. It was like any other night, I went in to adjust him on his pillow, help with his reflux and turn on his "music", he loved his Fisher Price aquarium that played music. Then headed back to bed. Kalen got up with him around 6am, he helped Dylan with his allergies and Dylan was so happy. Kalen also "adjusted" him on his pillow and turned on his music. Gave him an extra squeeze, Dylan smiled and Kalen left the room. Due to the upcoming Memorial day holiday, Kalen was planning on going into work early so he could get off early. I'm so glad that he didn't. He went in later than he wanted. On his way out, he checked on Dylan and knew something was wrong. He screamed to me, telling me something was wrong with Dylan. I jumped out of bed and went running into his room. We started CPR and called 911. Brianna who was standing in the hallway, telling us to calm down and take deep breaths, saw her parents performing CPR on her brother and were stressing out. Brianna still asks us why Dylan was so blue. She saw a lot. We are trying to get her into therapy so she can work out her feelings.
There were so many paramedics and cops at our house. It was very chaotic. Very little info was given to us. I didn't see a heartbeat on monitor when they wheeled him out. I vaguely remember saying the words over and over,"this is not happening, this is soooooo not happening". I was shaking so badly and felt so nauseated. I also kept thinking cops don't come to our house, why are they here and why are there so many of them. I did know from our friends daughter who died 2 years ago that cops would be coming to the house if a 911 call went into claiming a child died. I mean I've called 911 before when Dylan had seizures but this was nothing like before.

After a lot of waiting, the Fire Department Chaplain came and we followed after him to UCD Medical Center. I had already called 2 friends to let them know Dylan died, but we arrived, the social worker told us that there were a lot of people "working" on him. The paramedics were able to get him breathing but he was on a respirator and got his heart started moderately fast. Kalen and I didn't know what to think. There was a little bit of hope, but it didn't look good. Nothing like this had ever happened to Dylan so we didn't know what to expect.

Dylan stayed in the ER for awhile and was eventually moved up to the PICU. He had a fabulous team for medical care. I still play words with friends with one of the nurses on my phone. Although it was the worst thing that had ever happened to our family, we are so grateful to those that helped try to save our Dylan. We will be eternally grateful for them.

Having Dylan in the PICU allowed family and friends come show love and support and say our good byes. It was extremely difficult, but I am so glad that everyone that came got to see him and say their "goodbyes". Family members slept in the most uncomfortable situations. Floors, chairs, and some didn't sleep at all. We are so blessed to have such a great family.

On Saturday, May 29th, Kalen and I had to make the toughest decision of our lives. We were told after 3 neurological assessments that Dylan had severe brain damage and that we had to decide what we were going to do. How do you "choose" to stop helping your child? It was so hard. Our hearts were saying one thing while our minds were telling us another. At 7:37 am, Dylan was pronounced legally brain dead. I fell to the floor and wanted to throw up. I wanted more than anything to have the situation be the worst nightmare I ever had. But it wasn't. We were surrounded by loved ones, our pediatrician(I'll have to share why we were so lucky to have him there in another post), friends, medical staff that cared for him all night and could have gone home when their shift ended, and family.

We got to spend the next few hours holding our son's body. It was the worst feeling leaving the hospital without Dylan.

We are trying to make our way through what the new "normal" is for our family. Thank you to all who came to the hospital, have brought dinner, watched Brianna, cleaned my floors, washed dishes, helped plan the funeral, participated in the funeral, have sent cards, came for visits, made countless batches of cookies, sent flowers, brought Dylan flowers, phone calls, hugs, smiles, warm thoughts, have said prayers for us and our family, to those who have lent an ear, and a shoulder to cry on. (And played words with friends with me so my mind stays busy)

Here's some photos from those crazy, insane, horrible, and painful days...............

5 weeks ago...life was normal here

I just realized as I was scrolling through photos that I didn't post anything after Easter. Here's some photos of our life about 5 weeks ago when life was "NORMAL".

Here's Brianna at her gymnastics "show". She is really good at gymnastics. I think she has natural talent. She impresses us with cartwheels(both ways) all the time!!!!

Brianna loves taking photos. I'm so glad that she did. These are some of the last photos we have with Dylan in them smiling. I'm so grateful that my 4 year old just recently became obsessed about taking photos with camera and my iPhone. We have some funny, interesting, and unrecognizable ones:) I miss Dylan's toothless grin!!!

Brianna graduated preschool. She was so excited. We can't believe how grown up she is. She reminds us every day that she will be 5 in just a week months. WHERE DID THE TIME GO????

Brianna and her best friend JoJo.

Brianna and her buddy Charlie

Brianna and her bud, who we heard lots about all school year, Isaiah

Pretty is really excited to start kindergarten in the fall. My on the other hand, am nervous for so many reasons.

Tuesday

So I went to the dentist today. Don't you love that "clean" feeling afterwards. Well what I loved about going to the dentist today was that I got to talk about Dylan. I miss him so much. I absolutely love talking about him. He makes me smile:)

Had to share this

I found this article on a blog and it makes sense to me. I just wanted to share.

http://www.reviewjournal.com/lvrj_home/2006/Feb-26-Sun-2006/living/5987837.html

Help!!!

I was messing around with the design template here on blogger and am now not happy with my background. Anyone know how to get it back to the "old" way of designing blogs here on blogger?

Today

Today is hard. I had sent Dylan's info to one of the moderators of the private blog that I now belong to. I saw his picture as I scrolled through the kids. I knew it would eventually be there since I sent the info, but it was so hard seeing his info. He is now one of the newest "angels". I cried, which really was sobbing. UGH!!!!!

I've been told that it gets easier but right now I don't see how.

My heart HURTS.

What to do?

When I go to the cemetery it's hard. Everything is hard. We are waiting 8-10 weeks for Dylan's headstone. In the meantime there is nothing there letting the world know that my son's body is there. I've looked at other blogs of family's who have lost a child. They have a flowers and photos with the name of the child. Not sure if the cemetery allows it but I think that's what I'm gonna do. Any ideas?

For those that don't know what to do.

I saw this on the family blog of a mom whose daugther died. I have been told that many don't know what to do or say right now for our family or someone else that has lost a loved one. Maybe this will help you. Right now when people ask me what I need I honestly don't have a good answer except bring Dylan back to us, which I know can't happen. If you would like to see the whole post check out her blog. I linked it with her name. Thanks Stephanie! @ A Daily Scoop.
1) Acknowledge the Loss. -- Don't let your fear of doing or saying the wrong thing keep you from doing or saying anything. It is important that your friend know you care. How you acknowledge the loss depends on your relationship with the person.

For a stranger - a blog comment, or if you have their address a note telling them how their loss has made you or the world better in some way. My sister in law was deeply affected by a tragedy last year in her neighborhood. A family in a minivan was hit from behind by a semi and their 3 children were all killed. Since this accident a year ago, every time my sister in law passes that exit on the freeway she tells her 3 kids that she loves them. That type of thing is great to relay to the grieving parents.

For a friend or acquaintance - Send a card, an email, flowers, a text message, a voice message, a contribution to a charity. Let them know you are thinking of them and praying for them. If you want to send a gift -- see my notes on the best gifts below.

When you see them for the first time after -- It is best to just give them a quick tight hug and tell them "I love you." Saying you are so sorry for their loss, crying, or talking in depth about the loss just brings up the feelings of pain we are trying so hard to work through. Also, be careful about the look in your eyes. Try to give a look of tender love and confidence. I know it is hard to control things like crying and the look of pity because seeing us makes you think of the loss and it saddens you. But what we need is love, not pity.

For a close friend - This is where things get tricky. We need different things at different times depending on the stage of grief we are in and how we are feeling that hour. When in doubt, ask your friend "What do you need right now? Space, a shoulder, a distraction, a joke, cookies, chocolate, Wii time?" Give them what they need at the time and don't expect the answer will be the same the next day or even the next hour.

Serve your friend. Most people will not tell you when they really need something. I highly recommend insisting on serving. Don't ask if they need help cleaning. Just show up with your gloves on a cleaner in your hand and ask to see their bathroom.

Family - Come. If it is at all possible, come as soon as you can to surround your family member in unconditional, nonjudgemental love and support. Then do anything you can to help them. Do all the things I wrote in the close friend section. But most importantly just be with them. Even if you don't talk. Just be near them.

2) Want to send a gift? For Children -- When there is a child involved, sending a fun surprise really can take their mind off of their sorrow for a while. I think "doing types" of gifts are wonderful. My children loved the crafts people sent. My kids happen to really love stuffed animals, I know not all kids do, but mine do and they received several that they treasure. Happy mail from other kids is also a great treat for kids.

For Men: My husband tells me guys don't want stuff. They want distraction -- escapism. They want a guy friend to call them up and invite them out for a guy movie or a game of baseball or whatever else they are into. I have said this before but I also think the Wii or those kinds of distractions are good.

For Women: Sentimental gifts probably top my list. Photos, songs, DVDs, poems, the locket I got, the scrapbook, the magic blanket, tulips. Every gift says "I love you" and so every gift is wonderful.

Books:
Most people who experience a loss also receive a number of grief books. I am no exception. The only problem with grief books is that it is VERY difficult to read anything of any length when you are submerged in grief. Your brain just cannot focus on something other than that which is lost for more than a few moments. So reading ... well ... I managed to skim one or two books on helping children through their grief because I felt it was necessary for me to know this as a mother. That was so hard to do though. I am an avid reader and I have only managed to read one light historical fiction book. It was a bit of escapism for me but even then I was not as into it as I would normally have been. It took weeks before I could even watch TV (well except for SYTYCD). Reading takes so much more concentration than that. I am getting to the point where I think I could read more now, but I am still not up for any book about sad things.

3) Long term care:
Time is a strange thing. I see the date on my calendar is late July but to me it still seems like June. The last 6 weeks have been a blur. The world is moving on, moving forward, but for me, it is strange to think it isn't still June. If someone close to you has lost someone in their immediate family, you should assume that this will be a sorrow to them the rest of their mortal lives. They may not always talk about it. They may not always think about it. But it will never completely go away. I think it is great to "check up on" a friend a couple months after the loss again just to let them know you haven't forgotten their pain. I may write another post on this down the road when I have more experience with the long term end of it.

4) Remembering: You should not be afraid to mention those who have died. We who miss them most enjoy remembering them. We want others to remember them too. They are part of our family whether they are on earth or in heaven. But here I must add a caution. We want to remember our little one but we DO NOT want to remember the circumstances surrounding their death. For most of us, the day our child died or the day they were in the accident that would take their life was the WORST day of our lives. Personally, it is something I want to forever blot out of my memory. So, while it is natural to wonder about the details surrounding how a child died, DO NOT ask this of the grieving parent. If they want to tell you they will do it of their own accord. In the case of accidents, they have already had to relive the experience by telling it to the cops, CPS, and the coroner. Every time I have to tell someone about this day I am immediately taken right back there to all the horrid emotions and crippling questions that surround those events. "How" is just not that important. If you have to ask someone, ask a friend of the family, not the family itself.

5) How are you?: This is an unavoidable question in human society. We answer it everyday several times from loved ones and strangers. It becomes a dreaded question when you are dying inside and don't want to share that with the asker. For those of you grieving, I have found that "I am doing well right now" to be a good answer. If I am not doing well, I stay silent and nod my head. Or I say "good days and bad days." I am sure you have found your own strategies for answering this question as well.


For the askers, if you are really close to the person, I think it is okay to ask. Personally, I am not bothered by this question, but I know many others are. But for most friends, it is better if you just skip that question and say, "Hi. It is great to see you/hear your voice ..." then go onto the business of your call or visit.


I hope this helps some of you know how to deal with those who have experienced loss. I may have another installment later if I think of more things or if there are enough questions that need answering. Till then I will answer one of your burning questions. "How am I?"

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.

Funeral for our sweet boy

Our sweet sweet boy, Dylan, passed away unexpectedly. We love him so much and miss him dearly. Our hearts are broken and my arms ache. I long to hold him again. We know he is free from his earthly trials. Brianna has reminded us that now they can both run around. Or as she says, we will still play together.

Thank you for all the love, support and visits. During this time it's been a blessing to see everyone's lives our Dylan has touched. I am so grateful that I got to be his mom. I miss his smile and laugh. That seems to be the concensus of how most people remember him.

If you would like to attend the funeral leave your email in the comment section and I will send you the details.



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