Big Clothes Project

Today's goal was all the kid's clothes. I use plastic bins to store each size. I have 1 bin per size and have always kept them pretty neat. When the baby grows out of a size, I get the new size out of the closet and put the old size away. However, when living at RMH it's more difficult. I don't have time or energy to keep things neat, so clothes get shoved into a bag as they get outgrown or an empty diaper box. Gabriel was in 0-3 month clothes when we moved into RMH and he was in 12mo before we moved out of there. Tyler went from 18mo to 24mo and some 2T while we were there. Dawson went from 3T to 4T. So we had a ton of clothes in just about every size to sort and get into bins. Plus people had given us clothes too, so it was a lot of sorting.
Dan helped me bring all the totes out of the closet and we spread them around the room to have access to them all while we sort. I also wanted to go through and get rid of some things we don't want or need, the jeans with holes, etc. I started and saw Tyler's jacket, and his cute fluffy robe and some other things. I then decided I wasn't going to be able to do this project without some distraction. So I called up a friend from my mom's club and she was happy to come over and help. So we sorted clothes and chatted a bit. Gabriel started fussing after a while, so then she kept him entertained while I got more done. It's so nice having help! Here's the room full of bins.

2 bins and a box of clothes I'm going to get rid of

Some is going to another boy with Infant Leukemia. They just moved to LA from South Africa to get better treatment and they are stuck with all the medical bills since they don't qualify for insurance here in the US. So I figured the least I can do is help out with clothes and some toys. I have a bin that's going to Once Upon a Child. I sell clothes there and get more of what we need with the money I get from them. Some of it is going to a Christmas donation organization for needy families. I just heard about that tonight, so I'm going to sort through the toys for them too in the next couple days. I also have blankets and stuff for the Women's Shelter in town and our unused blankets are going to a cancer organization, Blair's Tree of Hope, to go back to the hospital for other kids with cancer. So this week's goal is to get all that stuff to where it needs to go! Except  BTOH, I'm meeting with her another time. For incentive, some of the things that need to leave this place are now in the hallway.

After she left, Gabriel was being fussy, so I was chatting with another friend on facebook and she ended up coming over to play with Gabriel for a while so I could finish. It's nice having a friend who lives only a couple minutes away! He was being a bit fussy and towards last he was even giving me dirty looks. I got it all sorted into bins and boxes of what goes where though and the rest put back into the closet.

It's really nice not having this pile in front of the closet anymore. Some of it is in the hallway, other stuff got tossed onto another pile of stuff, so I can't really say it found a home, but at least it's less in the way now. It's a start. At least this area looks nicer now. This is the "before" picture. Now all that's left is the bassinet that has some things in it but nothing next to it or in front of the door.

For not even wanting to get out of bed today, I think I got a lot done. I've been trying to get up earlier, but today it just wasn't happening. I had gotten up to get Gabriel and nurse him, but then Dan took him when he got up and I fell back asleep. Dan sent Dawson to tell me to get up and he came in with his cute face and said "Get up please Mommy!". So of course I had to. Dawson helped me with laundry today too, we got 2 loads done. He likes carrying the quarters and putting them in the machine (apartment laundry).

I'm hoping to get some of that stuff out of here while Dawson is at school this week. Tuesday and Wednesday I have people coming over. I also have appts on Wednesday and Thursday morning. It's looking to be a busy week, which will be nice.

This poem I got from another grieving mom.


My First Christmas in Heaven

I see the countless
Christmas trees
around the world below
With tiny lights, like Heaven's stars,
reflecting on the snow

The sight is so spectacular,
please wipe away the tear
For I am spending Christmas with
Jesus Christ this year.

I hear the many Christmas songs
that people hold so dear
But the sounds of music can't compare
with the Christmas choir up here.

I have no words to tell you,
the joy their voices bring,
For it is beyond description,
to hear the angels sing.

I know how much you miss me,
I see the pain inside your heart.
But I am not so far away,
We really aren't apart.

So be happy for me, dear ones,
You know I hold you dear.
And be glad I'm spending Christmas
with Jesus Christ this year.

I sent you each a special gift,
from my heavenly home above.
I sent you each a memory
of my undying love.

After all, love is a gift more precious
than pure gold.
was always most important
the stories Jesus told.

Please love and keep each other,
my Father said to do.
I can't count the blessing or love
has for each of you.

So have a Merry Christmas and
Wipe away that tear
Remember, I am spending Christmas with
Jesus Christ this year

Progress and Pictures

I got some things done today! I had company in the afternoon, Dawson got a couple playmates. Two boys, one his age and an almost 2 year old. He seemed to like having the extra kids around. It was nice having people around too.
After they left I found some motivation and got to work. I tackled the breakfast bar in the kitchen. It was our catch-all for papers and other things. When we moved back in, we put a lot of things up there. I took a bunch of pictures yesterday for motivation, so I can post before and after pics. So here's what I did today! Feels SO good to have a clean countertop! I hope it stays that way. I still have a few things to clean off it, but it's so much better than it used to be. I even made some cookies with all the space I have. Though I cheated, it was just cookie dough someone had brought us, but it's a start!

 Gabriel is liking his "new" musical toy I brought out for him the other day. He's sure getting hair now too! Dawson took 2 years to get this much hair.

 Dawson saw me get a picture of Gabriel and wanted one also. It's so cute how he wants pics taken and then he has to look at the picture right away too and he smiles so big.

 I told him to kiss Gabriel. He mostly does this to show off for the camera. ;)

 We found this Angel at Menards. We went to the Christmas section to look at all the trees on display and to look for some ornaments. Dawson loved it! On our way there we saw some houses with lights also, which really got Dawson excited for "Chriscris".

 My most alive looking flowers. Most of the rest are gone now. The Calla Lilies are alive, but some are drooping and the rest are long gone.

 This is a painting that Tyler's message board group had made for us.

 They used part of my Caringbridge post from the night Tyler died. It's amusing because I was so tired that night and just whipped something together quick so I could update people and get to bed, so at first I wasn't sure what to think of them using that, but it's still so true and it's good to think of him being happy. I just wish I could watch him play for a while again.

Our hallway had several things that just got tossed there when we moved back, and even when we moved into the apartment, so they are at least all in their correct rooms now.

 The boxes will be gone soon too. I sorted through some toys and am giving a box of cars and things to a friend's 2 year old.

 Gabriel usually starts out on his belly, but lately he's been sleeping on his side. Babies look so peaceful when they sleep!

 We found this ornament at Menards. It's a little Angel on a cloud with a Christmas Tree

 We also found this one. It's so shiny that I couldn't get a decent picture of the words. It says "If I had just one wish, It would be for a stairway, that reached up to Heaven, so I could bring you Home"

I had another rough evening. They're usually hard. I try to keep busy, but it's so quiet and I always end up thinking about Tyler and all that we're missing with him gone. Everything seems to boring with him gone. He kept everything interesting and always kept Dawson busy and kept us on our toes. I was thinking about what Dawson must think, and wondering what he thinks about Gabriel. Today I read about a 4 year old girl who had lost her 10 month old baby brother. The mom is now pregnant and the girl wants to know when the baby will be born, and when the baby will die. It's what happens to siblings, right? It's hard to read about these other hurting siblings, but at the same time it's helpful to hear what they are thinking since Dawson doesn't talk about feelings or thoughts. There's so many things that you just wouldn't think of.

I'm not sure what hurts worse, missing him myself or worrying about Dawson missing him. Or worrying about our family as a whole, trying to move forward with each day and somehow function with this new handicap. I walk in the store and it feels so weird. I can't even explain it, I'm almost shaking and I just feel very out of my comfort zone sometimes. I feel it should be obvious to everyone, but they just carry on. They can't see the pain I'm in, they have no clue what it's like. Or maybe they do, and they're just trying to blend in too. Some days I wish I could be carrying a sign with my current thought or inspirational message telling everyone how precious life and children are. I've heard that the pain never goes away, we just learn to live with the pain and carry on.

I used to be so anxious for the toddler years to be over, and now that Dawson is saying things that are making him sound like such a little boy instead of a toddler, I find myself nervous of what the next stage is going to be like! Dawson is now a little negotiator. Today I was trying to get him to eat his supper. He chose Spaghetti Os. Then he wanted spaghetti instead, which I wasn't about to make since the can was already open. He then left in a huff and went to play on the computer. I told him it's time to eat. He said "Mom, no" with a serious look. Then he started babbling, and I caught little phrases here and there. He pointed to the clock and was saying something about look at the clock, it's time for computer now. Apparently the clock is now on his side. He doesn't know time at all yet, but I've done the same thing, telling him the clock says it's time to do something. So I guess he's turning it around on me now. It took a lot not to laugh as he was pointing at the clock with his serious face. He's so cute! He hasn't been eating as well lately though. If we push him, he eats nothing and gets aggressive, so we try to find a happy medium. Hopefully he'll get back to some better eating habits. I haven't been as hungry for the things I used to like either, so we're trying to take it easy on him and consider what he might be going through. At the same time we'd really like him to eat something! So he was bouncing back and forth, coming back for spoonfuls and we'd applaud with every bite. He didn't eat a lot, but he did get several spoonfuls in him. Lots of praise and negotiations. That's what the Autism Center had been doing, so we've been trying to continue that since it seemed to work for him. We just need to keep on top of it, but most days I feel quite lacking in brainpower and barely have the energy for it!

Gabriel has been very fussy lately. I'm not sure if he's picking up on the stress and emotions of everyone or if he has something going on too. He has periods of being happy too, but he gets fed up with things very easily and just hasn't been himself. I thought he was constipated, so I gave him prunes. He slept twice his usual amount yesterday and today, plus he was just really fussy. He did poop a decent amount, so I was happy with that, but now he's still fussing and arching his back. I'm trying not to freak out, but that's how Tyler was acting right before diagnosis. It's common to worry though and go right to thinking the worst after we've been there. Hopefully tomorrow will be better.

Thanksgiving

Our first holiday without Tyler is over. We went to my parent's house and we did make it through the day and even had a little fun, but there were a lot of mixed emotions. This all sucks. I can't go anywhere without reminders of him. Gabriel sat in Tyler's highchair at my parent's house, Dawson is using Tyler's carseat in the van since Dawson's is in the car. Tyler was my good eater, so while Dawson refused all the food, I couldn't help but think of how excited Tyler would've been to see it all. We went for a walk and played on the swings, two things Tyler loved doing. It's hard not going through daily life not thinking about things like this. Tyler loved everything we did and was always so excited about things.

Dawson loved going to Grandma's house and had a good time, but he seemed to be having some mixed emotions too. For a while he'd be happy, then he'd get aggressive or just look sad and need to cuddle. He was doing a lot of hitting, kicking and things he hasn't been doing at home anymore, so I think he was just missing Tyler too.

Gabriel loved all the attention. He had some pumpkin pie, a piece of stuffing and some turkey. He wasn't sure about the pie, but he loved the turkey and stuffing. I have a feeling he's going to have no problem wanting to transition to regular foods when the time comes! For now he's mostly doing baby food and some Gerber Puffs.

Today and yesterday was just harder on both of us. Things are settling down now, we're getting less mail, less phone calls. Dawson is back in school. We haven't been to the hospital or to appointments. The feeling that I should be going somewhere each morning is gone. I look at my appt calendar and it's so empty. We're starting to miss him more and realize he's actually gone. Today I went into the toy room to clean some things out that nobody has played with in a while to give to a friend. I haven't really gone in there yet and it was so hard to see all his toys. Stuff he played with everyday, the toys he'd just gotten as gifts in the hospital but was too tired to play with them for more than a few minutes. So we put them aside thinking he'll have fun with them later. Dawson doesn't want to go in there either. He wants nothing to do with most of our toys. Maybe he's having the same problem. He plays with a bunch of balls in a basket, or the computer. He has actually started to play with Gabriel a little bit here and there. I brought out some new toys that they were both interested in, so that helped.

Sorry for the lack of pictures on my blog these days, it's been one of my issues. It's hard for me to get out my camera knowing I won't get any more pictures of Tyler. I do want to get pics of the other 2 kids, but I just haven't been able to yet. I did get 1 picture of Gabriel sleeping in his Jumperoo, and the funeral flowers because I knew they wouldn't last. Otherwise I think of getting it out and I just don't. I bring it places sometimes but don't use it. When Tyler broke my camera in July, the thought of going without it for 2 weeks was just awful. Now it's been 3 and I've barely thought about it. So today I decided to get it out and get a few pics. It actually wasn't that bad. Hopefully I'll get back into it. The first several were from the day I took flower pics. These flowers are all dead now.


I love this picture of Dawson!

 He was being quite a ham that day

 I love the peaceful view out our big living room window! We can see the river through the trees a little bit too when the leaves are gone. Much better than looking at a parking lot like our old apartment.

 Gabriel being his usual cute self

 He looks so little, even 2 weeks ago!

 He looked so peaceful sleeping in there! These pictures really get to me though, because right before Tyler was diagnosed I got a picture just like this. Little did I know, he was falling asleep in his toys because his counts were low. So moments like this make me want to rush him to the clinic. According to other moms, it's very normal to freak out over little things like this. Dawson is looking at this picture and he says "Look Mommy, it's Tyler!" It took some convincing for him to realize it was Gabriel. They look so much alike! He looks at pictures of Tyler a lot on the computer.

Gabriel came over to the couch and was working on standing up. Then he saw the camera and decided to be cute for a picture instead.

 Dawson is sitting by the balcony door playing with his basket and balls. He usually plays with them in the basket, but sometimes he'll line them up like this too. I think he misses RMH's pool table!

 The living room is looking much better than before! The boxes were stacked out to where the jumperoo was, we just had a small path along the couch to walk. It's looking much better in here! That black box has a bunch of random little stuff in it though, so hopefully it's not too hard to sort through it all. We're hoping to put the tree up in front of the window in the next couple weeks.

I do still have many things to be Thankful for.

~I have 2 kids that give me a reason to get up in the morning. 

~They give me a reason to be excited for Christmas and other things

~I have the best, most content baby ever

~A sweet toddler who makes me laugh

~I have family and friends who are so supportive

~We have a place to call Home

~I have a faithful husband who loves and puts up with me, even on the worst days. When we agreed to "for better or for worse", we really didn't see all this crap coming, but we are stronger and closer because of it.

I'm also Thankful and it puts me more at peace knowing we gave Tyler as fun and good of a life as possible while he was here. For a 2 year old, he's really done a lot. He's been to 4 Zoo's in 3 states (MN, WI, IL), the Children's Museum in MN and Madison, WI, the State Fair and County Fair. He got to go on lots of rides and he discovered how much fun they are! He got to pet animals and play with other kids. He's been to every playground in town, and we have a lot of them! Even been to some that aren't in town. We walked through the flower gardens and watched the ducks on the river. We even went to the dam and watched the "waterfall". He got to go to "school" 2 times a week (evening preschool classes) and totally loved it. He got to ride a bus, even though it was just a shuttle bus. He got to see the Blue Angels plane show. Ride a pony. He got to splash in puddles until he was totally soaked, sled down hills and run through the grass. If we were driving and saw a train, we'd pull off in a parking lot and watch it go by. He'd be so excited. He went to Chicago, saw the big ships and watched fireworks over the lake. He went to the top of the Sears Tower and looked over everything. He went to the Science Museum and saw many cool things. He had a lot of toys and things at home too, he was a bit spoiled with his own ball pit, train table and many other things he loved. I'm glad he got to enjoy them all though.

Tyler only had 17 months at home after he was diagnosed and I think we packed a lot into them and made the most of it. He sure loved life and was so excited for each day, whether it was having fun at home or going somewhere fun. He taught me how to enjoy all those little things and we have so many good memories and for that I am Thankful.

Three Weeks

It's been 3 weeks, though it feels like much longer. Tomorrow we're going to my parent's house for Thanksgiving, though I'm not feeling the holiday spirit. Thankfully I have my other 2 boys to give me things to look forward to. I'm excited to have Dawson help set up the tree and see what Gabriel thinks of it.

We've been working on cleaning more. There's only 1 stack of boxes left in the living room. It's looking so much better! It's hard not to look around and get overwhelmed, but I'm continuing to remind myself to just do what I can and worry about the rest later. Today's goal was to make more room for Gabriel to play in the living room, and we did.

Dawson is loving school, he happily gets on the bus and is smiling when he gets home. His teacher says he's talking to other kids, which is a big improvement from when he left school in April! I'm glad he's made such improvements, despite being moved around so much.

Gabriel has learned to army crawl and is getting quite efficient at getting around the living room. He moves faster each day it seems. He can go from sitting to his belly and back to sitting again. He can pull up and stand along furniture. He even moved his legs and walked several feet when having his hands held. I didn't even know he could do that, a couple days ago he didn't, but a friend did it yesterday with him and suddenly he just took off! He's such a motivated and determined little boy!
Here's a poem I found on a bereaved mothers group:

There will always be a empty chair at the table.

There will always be a hole in a grieving mother's heart.

There will always be "why's" and "what if's" and "what could I have done different's", when in reality it is God's decision, not our own.

There will always be moments during happy times that you wish you could share that with your child.

There will always be tearful times, and once more, we will dry our tears and put on our coping face and move forward.

There will always be a shadow of sorrow that travels our life path with us.

There will always be well meaning people that tell us how to grieve and when to stop grieving.

There will always be regret for something that we feel like we didn't do enough of or well enough.

There will always be a tinge of guilt because our child died and we continued to live.

There will always be that raw spot that lives in our soul.

There will always be days that emotions run too high and hurt runs too deep.

But one sweet glorious day, we will meet our children in heaven and there we will always be.

Two Good Days

Yesterday was a pretty good day. I was very motivated and feeling good. My headache stayed away most of the day and at most was just a dull headache. I got Dawson's clothes in his dresser, 2 small suitcases, 3 bags and 2 boxes emptied. Also all the diaper boxes are on the shelf. So we now have all the suitcases emptied and I can walk through the boy's room without dodging boxes and tripping on things. I still have a lot to clean out in there, but at least I can find their clothes now without digging in suitcases and boxes.

Gabriel has been very active, continuing to try pulling up on things and inching around the room. He was sitting on the couch with Dawson and I and suddenly grabbed Dawson's cheerios and started eating them. One at a time, he happily munched on cheerios until his little pile that Dawson had spilled was gone. Gabriel was so excited for the new food. I guess he'll be having cereal now! He does have 2 teeth and does well with it, I'm just still in denial that he's old enough to be doing these things! Once again I have spent the little baby days in the hospital. Though I was with him everyday, there just isn't that quality and comfort that you get at home, so it almost feels like I've missed out.

Today I sold Gabriel's exersaucer on craigslist. He still has his jumperoo that he prefers, and it's so nice getting a big baby thing out of the living room. We have a long way to go as far as cleaning and getting our floor space back, but we're chipping away at it slowly.

We went to my parent's house today for my dad's birthday. It's still very hard going places with the kids, getting them out of the car and only having 2. I actually miss how crazy it was having all 3 out and about. I can actually go in someplace and not need the stroller. It's very weird. Dawson was excited that we were going to Grandma's house. He chanted "grandma's house" all the way out of town and several times on the highway too. It's nice seeing him get excited. It wasn't too bad, but it's tough being in places with so many memories. It seems so quiet without Tyler running around and driving shake n go cars up and down the hallway. I'm realizing lately that many of the things they played with was all Tyler's interest. Without him here, Dawson doesn't touch the cars at all. They used to fight over them. Dawson decided to play with a couple balls for most of the time we were there.

We have this white stuff on the ground now. I'm partially in denial and partially just grumpy about it. I can't believe it's winter already. I still remember being so excited when the snow melted and the ground started drying up a bit so the boys could play outside. Tyler wasn't supposed to be around mud, so we had to wait. Then after only a few times outside, Tyler broke his leg, then 2 days later we found out he relapsed and then we were admitted toward the end of April. We did get a few days in July and some time in August, but for the most part he was in the hospital from April to Nov. That's a huge chunk of the year. My favorite months of the year. I'm not a fan of winter. I could live at the hospital the entire winter and not mind at all, but that was the 2nd summer/fall that's been taken from us now and that's just really annoying. Winter is depressing. It gets dark around 4:30 now, I keep thinking it's bedtime when really it's not even supper time yet. The evenings were hard enough before we turned the clocks back and added an extra hour of suffering. Evenings are boring. They're supposed to be relaxing, but when I get bored and relax I often can't find anything to do, so then I start feeling lonely.

Tomorrow Dawson has his first day back at school! I'm excited for him. I think it'll be good for him to get back. He loves school and things to do with it. He has Leap Frog movie series and this week he's been watching Math to the Moon. Last night Dawson stayed awake until midnight. He was reciting numbers and math. "2, 4, 6, 8, 10"  Counting by 10s to 100. "10 minus 10 equals 0"  He's so smart and I'm glad he's so interested in things like that! Hopefully he'll like his new teacher as much as his last one.

The Five Stages of Grief

I copy/pasted this all from this website http://grief.com/the-five-stages-of-grief/ 

The five stages, denial, anger, bargaining, depression and acceptance are a part of the framework that makes up our learning to live with the one we lost. They are tools to help us frame and identify what we may be feeling. But they are not stops on some linear timeline in grief. Not everyone goes through all of them or in a prescribed order. Our hope is that with these stages comes the knowledge of grief ’s terrain, making us better equipped to cope with life and loss.

Denial

This first stage of grieving helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle.

 *As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface. 

Anger

Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this?
Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – - your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love.

Bargaining

Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God, ” you bargain, “I will never be angry at my wife again if you’ll just let her live.” After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others. Then can I wake up and realize this has all been a bad dream?”

We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumor sooner, recognize the illness more quickly, stop the accident from happening…if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.

Depression

After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way.

Acceptance

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves.

Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new inter-dependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time.

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I've been all over so far. I started grieving before he was even gone. When they told us he was probably going to die, we already knew that, but were in denial and holding onto hope. But at the same time I was in the Bargaining stage. Wishing I could go back and go straight to transplant sooner, but what if he would've died then, at only months old? Each scenario I re-thought and wondered about and I came to realize that it is what it is. There's no way to know what would've happened if we would've done anything differently. Wondering will drive you crazy, but seems to be a natural part of the greiving process. No doubt I'll probably go back to it, but for the moment I feel that we did everything we could've possibly done. The day he died I was mostly in Acceptance, though most of it was probably Denial. I just wanted him to be free of his pain and suffering. I've had some shorter moments of Anger. It's often hard to tell where I am. Is it Denial or Acceptance? I'm starting to do things during the day but still feel pretty numb, thought not as bad as it was a couple weeks ago. I hope my ramblings made some sort of sense. I often just get it out there and usually don't proofread. I find it keeps things more real that way. There are often moments of the day I'd like to edit, smooth over or just request a do-over, but life isn't like that and neither is my blog.

Full Range of Emotions

I woke up feeling just fine. I had a list made from the night before of things I wanted to do and I was motivated. My headache was gone and so is my cold! So we gathered up everything we needed to have and got things done. The meds are in the drop bin at the sheriff's office, flowers have been mailed, Target returns made, old garage key turned over to manager, checks cashed, McDonalds eaten and we made it home all within 2 hours! I love having Dan with me for things like that, I can just run in and get stuff done! Thankfully Dawson did do well in Target, despite a huge tantrum on the way. He screamed and cried for what felt like forever, but was probably only about 10 minutes. He wanted to go see Tyler. He screamed with each corner I took and was screaming at me to stop the car. I had pulled off and tried to talk to him but he wasn't listening to anything. He just had to scream and cry for a while. He seemed much better after he got it all out. We had lots of cuddles when we got home and played catch for a while too. He went to bed a very tired little boy.

Gabriel had some excitement today. He's been inching around the room, wiggling, rocking on all fours and even getting up on his hands and feet trying to jump and step his way forward. Those arms aren't in cooperation yet though. Instead he's decided to try something else. He'd been sitting on the floor playing and suddenly Dan asked me if I put him like that. I looked over and he was standing up by a big box! I have no clue how he managed to reach the top of the box. Standing by it, the top of the box was just under his armpit height. He then decided to try going hands-free, but ended up on his butt. I stood him back up and then he just decided to be cool and stand with 1 arm on the box. He's so determined! I have a feeling he'll be very mobile by Christmas.

After we got home, I relaxed for a while, but then got back to work on getting things organized. I decided to tackle the kitchen table next. It's been collecting mail, papers and other junk since we left. So I went at it, throwing the junk mail first, making a pile for things to file away and then opened the mail that hadn't been touched. I was fine until that part. I found a survey for Children's, 7th floor, asking how our experience was. We had such a fun time on 7th floor, where we could play in the hallways and playroom. We had a lot of downs with our ups, but when I look back on that time I just remember my smiley Tyler and all the fun we made sure to have. Then I saw a Speech discharge papers from when he had Speech in town. It said that Tyler has "good potential". The next envelope was from insurance. They often had to approve larger things, like his transplant, but I haven't gotten approval letters for anything else until now. It was for his brain MRI, the one he was supposed to have before he ended up coding that morning just preparing for it. It brought back so many memories, I can still see him laying there, his chest red and flattened after going through all the chest compressions. He shook in pain all day after that, even with upping his pain meds and I just hate that he had to go through so much in those last 2 months and not have anything to show for it. Nobody should have to go through the suffering he did in those last 2 months and I don't think anyone truly realizes what he went through unless they were there. Not only in the ICU, but also the week before. My stress headache has really flared up this evening, just thinking of it all. It's amazing how a person can have such a full range of emotions in one day.

I hope someday there's a better system for a cure. I hate that so many people know this pain. Seven children die every single day from cancer. So many kids have suffered years of chemo, surgeries and pain, just to lose their battle anyway. I think about all the people that Tyler has affected, and I'm sure each of those children had many people who loved them too. That's so many hurting people. It's not fair at all. I don't understand what possible good reason there could be for all this pain and suffering, both for the children and the families.

Thoughts and Places

These last couple days were tough. Yesterday marked 2 weeks since he died and it was harder than the 1 week mark. This time I had more questions. Wondering what, if anything, was he aware of that day. If we could've done anything differently. Thankfully I haven't thought of anything that could've been changed for the better. He was so very sick. I got his death certificate yesterday and there was 4 causes of death listed. Bone Marrow Transplant, Renal (kidney) failure, VOD (liver failure) and VRE bacteria. The VRE was his first problem. He got 105 fevers from it, but got rid of it. He stayed on those meds to prevent it from coming back and it did anyway for a very short time. The cultures had been negative, so I have no clue where they found the VRE during the autopsy, but they must've found it somewhere. I'm nervous to get the Autopsy results back. I've been advised not to read it myself, but to have someone summerize it for me.

My cold is thankfully much better today. I can breathe laying down and my head doesn't feel like exploding when I bend down to get something. I do still have a stress headache and other physical symptoms of stress, but not having the cold is a really good start.

I woke up this morning thinking about my planned meeting with Dawson's teacher. He starts school on Monday, so then I was wondering if the bus would come to our apartment or if we'd have to walk to the road, which is a fairly long walk to make with a child who doesn't like walking in the cold winter air, with a baby too. Then I realized that Tyler will never get to ride a school bus. He loved walking Dawson to the bus and coming with me to wait for the bus to get him after school. He'd get so excited and say "bus!". The first time he was bummed that he didn't get to follow Dawson onto the bus. He did get to ride the shuttle bus between RMH and the hospital though. That made me feel a little better. He grinned and went all the way to the back seat to sit.

The meeting with Dawson's teacher went well, she came to our place which was very nice. She plans to do a home visit once a month to chat about how Dawson is doing and play with him a bit there. There's only 6 kids in his class, so that will be a nice slow start for him. He used to get more anxious with more kids. She said he could go over to the regular preschool too if he gets to liking having more kids around. She also mentioned that in the Spring we'll start talking about Kindergarten. I still can't believe that's next year already! My child can't possibly be old enough yet, where does the time go? I look at him and I have no idea when he got so big. Doesn't help that I barely saw him the last 6 months. He's really gotten the short end of the stick during all this. Even with getting him into services, it's still hard because he's still being bounced around. He did Speech at Children's while we were there, but that was only about a month by the time it was his turn on the wait list. Then the Autism Center for 2 months. Feels like it was just enough time to get into it, meet nice people and leave.

I took him to a Psychologist yesterday. That didn't go well at all. I explained to her that I wanted some advice on how to deal with his aggressive behaviors that he's having. He's confused and hurting along with the rest of us, but he isn't able to express those feelings and often acts out with aggression. I told her I haven't been pushing the subject, but it's always open to talk about and I mention it now and then when I feel he looks like he needs to talk about it. He will sometimes admit he is sad, but wants to go no further with the conversation. I don't want to make anything worse. So she decides to ask him if he knows what happened to Tyler. If he knows where Tyler is. If he misses Tyler. All questions were frowned at and answered with "No", which is his "I'm not talking about it" answer. He went to the other side of the room, she followed. So he went under her desk instead. When he got out of there, she tried again and he went under the couch. Then he was bouncing on the couch and she tried sitting with him and tried pulling him down to her lap. Dawson doesn't like surprise hugs most of the time, he freaks out. He said no, let go and she didn't. So he tried to bite her. She stopped him and then he hit her and ran away again, only out of the room this time. So I had to go get him and thankfully that was pretty much the end of our session. I had been hoping for some advice. I told her that he wasn't going to talk. She just took notes on what I said and didn't have anything to suggest to me other than a referral to a Psychiatrist to put Dawson on meds to calm him down. What the heck?! He's a confused little boy, he needs to have patient people to help him work through his confusion and problems, not be drugged right away and then see if we can work on something.

I later found out that she's not even a Psychologist, but a nurse practicioner who makes referrals and listens to people. She just thought he was hyper and needed to be calmed down. She didn't notice that he was just trying to get away from her. She even grabbed the hood of his shirt once and pulled him backward. Then on our way out she said we could make an appt to see her again in 2 weeks if we want. I think not! Thankfully I have a few friends who recomended other people, so I'll be trying that instead. I think having him back in school will help as well, but I want to make sure all the bases are covered and that we're doing everything possible to make this better for him.

I did get some laundry done today, with Dawson's help. He loved having something to do, he got to put the quarters in and put the clothes in too. I also went through the flowers again. Over half of them are gone now. I'm sending some to a friend who's friend makes flower jewlery and wanted to do that for me. I also decided since Dawson has been feeling cooped up and so have I, that we should go to an ECFE class. I had called and got the info about the one we'd been going to in April that we were already signed up for and it was tonight from 6-8pm. It was high on my list of places I was afraid of going because of all the memories attached. It was one of Tyler's favorite places and we had so much fun there. It was hard being in the same classroom. I could almost hear his giggles as he'd run around the room. He would often come sit on my lap during parent time and I was almost waiting for him to come running over to me. The gym was the worst, remembering him sliding down the slide and jumping into the ball pit. I was starting to think I'm crazy for going but then as I watched Dawson play and interact with the songs they sang and played at the table with the other kids, he was having so much fun. He needed to get out and do something he enjoyed. Even Gabriel loved being there. Dawson finally looked relaxed and had a calmer day. He was even happy to head to bed.

Preparing to Start a New Normal

Today I got a few things done. I called and found out that Dawson will be starting school on Monday! His class runs from 1 to 3:30pm, I think Mon-Thurs. Still waiting on the bus to be set up. He really needs to get out, he's feeling so cooped up and getting very irritable. He got to talk to Grandma and Auntie on the webcam today, he really liked that. Tomorrow is his Psychology appointment at 3pm. I've also contacted the Autism Center about home therapy and they'll be getting back to me about that in a few days.

We got another pot of flowers today, they were sitting outside our door, from our apartment manager. It's nice to see some lively flowers in here again. Apparently I was giving them too much care. I was watering them everyday. Like I said, I really know nothing about flowers! We were never allowed to have them here with Tyler.

Gabriel is doing very well, he's starting to scoot around on his belly a little bit and will make his way slowly around the room. He's such an easy going baby, I'm so lucky. He took a bit to adjust to not having many nurses and people's attention all day long, but once he realized he can be on the floor and have toys, he was very happy. He sleeps through the night too.

I haven't been able to do much for cleaning, it was another lazy day for the most part. Hopefully this cold will be gone soon so I can start getting some things done. Right now I can't bend over without my head throbbing, so I'm just taking it easy for now.

Phone Calls, Memories and Flowers

Today's goal was to get some phone calls made. I talked to Dawson's school and they are now working on getting Dawson back into preschool. I can't call the Autism Center about home therapy yet because the lady who sets it all up is on vacation until the 18th. I got Dawson an appointment with a Child Psychologist in town on Wednesday. Hopefully they'll be able to help with his grieving and understanding process. He's been sleeping in Tyler's bed. He always does when Tyler is not here. The other night he suddenly came running from his room, crying and wanted to cuddle for a while. Then last night he decided to sleep in his own bed. I've tried getting him to talk about it, but he has little words to begin with as far as emotions go. Today he was cuddling me and said "sad, mommy". I said "are you sad" and he said "uh huh". I asked if he was sad about Tyler and then he didn't want to say anything more and decided our cuddle time was over. I don't want to push him, and I'm glad he volunteered that much. It's a start.
I also called about ECFE classes. I've always gone to them in the evening. For a while we were doing Monday, Wednesday and Thursday evenings at the school. They had so much fun. It was by far their favorite nights of the week. On Mondays they got to play in the gym, Wednesdays we got to eat pizza and Thursdays we sang songs and played with the other kids. They got gym time each day we went too. It's going to be hard to go back without Tyler. He'd walk in with the biggest smile and was so excited for everything. He would sing "pizza pizza pizza!" all the way there on wednesdays. Dawson more than ever needs kids to play with though. He's been so lonely and loves those classes too, so I hope to get back to it. They've stopped the Mon & Wed groups, but they still have the other class we went to, so I'll just start with that.

I think I went all day without crying on Saturday. Most of Sunday too, but then the kids went to bed and it was quiet. That was usually my cuddle time with Tyler, in the evenings after Dawson went to bed. He would often go to bed at the same time, but when he wasn't feeling well, we would cuddle. So I was sitting there and it just hit me again. Most of the time I'm still numb, but then it's like the numbness goes away and the pain takes my breath away. So I took that hot shower and had a good cry. I still don't and probably will never understand why he didn't make it. He pulled through so much, so why after all that did he have to die? It's not fair. I've heard "at least your life can get back to normal now". What is normal? For us when we were home it was clinic appointments every week, or if we were lucky, every other week. But that's not a big deal. I got to enjoy him the rest of the time and that was way worth it. We will never be back to normal. Dawson is fighting to understand what has happened and where his brother is. He's lost without his playmate and Gabriel is just not old enough to play with yet.

I still have a bad cold, which is not helping matters any. I have no energy or motivation to do much of anything. Today I wanted to do something, but I wasn't sure what. Didn't want to sort papers, I always run into something about Tyler there. Don't dare go through a box, there's always something in there too and I'm just not feeling strong enough to look at his things today. I got a box of clothes for Gabriel in the mail, so I started to go through that, only I found things that would've fit Tyler, plus some Cars shoes in the size that would've fit Tyler and I hadn't even gotten past the first layer of the box. So I set that aside for another day. I did go through my flowers though. I watered some and picked out the dead ones. We haven't gotten much sun, despite them being close to the window.

This cold is really messing up the little plans I did have though. I had planned on having people over and getting my mind off things. Instead I'm sitting around just thinking. Not good!

Here are the flowers we got from the funeral. This basket was from my dad's work. Sad that my dad's work can send flowers, but Dan's (former) employer hasn't even sent a card or email of acknowledgement.

 Tyler's candle, Urn and 2 baskets of flowers. We have a rock up there too with a saying on it that someone gave us.

 Blue and Red roses from Dawson and Gabriel

 This big bunch was from us and was hanging at the service.

 I love all the colors

 Love the sunflowers. A few have died already though. They must be pretty sensitive. We haven't had much sun either.

 

 Calla Lillies

I hate to even say how some of these flowers are doing. Flowers are apparently not my thing. Despite watering them everyday they are still looking sad. If they took IV fluids they might have a chance, but apparently I suck at keeping flowers alive. The plain green plant and Calla Lillies appear to be more hardy.

Been home for 10 days now

There are not good and bad days. There are good and bad moments. Sometimes my mood changes within a few minutes, sometimes hours. Most of the time I'm unmotivated. Sometimes I feel ok, but then at the end of the day I realize I still did nothing. Some days I set goals, usually tiny goals. Friday I wanted to find places for all the flowers. We have 2 large arrangements, plus a couple large baskets, a vase and 4 smaller baskets. The next day I watered them all. I have a feeling they aren't going to last long. I've never had much luck with keeping flowers alive. Doesn't help that we've had no sunlight coming in today. The sunflowers are already looking very sad. Thankfully I got pics while they still looked good.

Yesterday I had a very productive day. I set no expectations and just figured I'd be happy with whatever I could get done. It's hard to even know where to start. A friend brought more food, so I started there. I got most of it put away. Our fridge is packed and there's no more room for anything in the cupboards, so there's lots of overflow on the floor. I unpacked 4 boxes of food. Then I found a bunch of old meds to bring to the drop box in down for disposal this week. I got some boxes together to go out to the garbage. I found 2 huge plastic bags that were used to pack a box with, so I used those for blankets. I now have a big bag of blankets for the women's shelter and a big bag of blankets for Blair's Tree of Hope, which will go back to the hospital for other kids with cancer. I kept the blankets with meaning, but we had so many that were never even used at all. Then I emptied 2 large suitcases. It's hard finding more of Tyler's things. Cars books, toys, his stuffed animal that has a central line, his little walking shoe for his cast when he broke his leg. I got it done though. Then I emptied Dawson's dresser, since he'd moved up a size. Got those clothes in bins and put in the closet, along with a few other bins we had out. I posted a few large baby things on craigslist since we have no room to store those things. I started a bag for medical stuff. Before we left RMH I put many boxes and bags full of medical stuff in the free area, but I'm sure we'll be finding stray things for years to come.

While I got some of those things done, a friend came over and took Dawson outside to play. So he got to play with her 2 year old daughter for a while. I had wanted to bring him to a model train show in town, but I woke up with a bad cold. I had planned on having people over this weekend to help with the kids. Sometimes just keeping up with the basic things is overwhelming. Other times I do get stuff done. Today I've been doing nothing. We ate and the diapers are changed, but my motivation has been seriously lacking. I was up most of the night. I hate these colds, I can barely breathe laying down and I can't get comfortable. On top of it I have a headache and I get dizzy when I move too fast. So I've been on the couch most of the day.

Dawson has been obsessing about video clips of Tyler. He watches them over and over. Sometimes just watching the same 3 seconds to hear a word repeated. He now sleeps in Tyler's bed. It's what he always does when Tyler is away. Last night he suddenly got very upset and came running out of his room wanting to cuddle. Maybe he's starting to have moments of realization. It's hard to tell what he's thinking. I'm going to get set up with a child psychologist to help us out. I also need to get his therapy team set up in town. Monday will be a busy day of phone calls.

Tonight's goal is a hot shower. Maybe it'll help with my cold.

Memorial Service Planning

When my grandpa passed away, after hearing what a process the funeral planning is, I was nervous at the thought of someday having to do it. Of course that will be a very long time from now, so no worries right? I never thought I'd be planning a funeral only a couple years later, and worse, for my own child! This stuff happens to other people, right? I remember getting a cord blood registry ad in the mail when I was pregnant and thinking "I won't need that". Those things happen to other people. Then when Tyler was diagnosed I changed my tune, a little bit. Tyler was a fighter, he pulled through and we were excited to be done. He wasn't going to relapse, that only happens to other people. Then it did. Ultimately, we weren't going to lose our child to cancer, that only happens to other people. Then it did. I remember reading something on that order when Tyler was first diagnosed. I tried to wrap my head around it, but it just wasn't a fathomable thought. It's natural to think this way. It's often hard to imagine something until it happens, and our minds often just don't want to go there anyway. I have actually had people de-friend me on facebook because "that stuff doesn't happen to people like me and I don't want to read about it". Ignorance is bliss I guess.

I called the funeral home friday morning, expecting to be able to come in. Thinking these things happen pretty quickly. He said we could get things started on monday morning. At first I was annoyed, but then I was grateful for the time we had to talk about things at home and make some decisions. We weren't sure whether to choose a burial or cremation. We don't have a house yet, who knows where we'll settle down. Plus Tyler really didn't look much like himself in the end and we would rather remember him as the cute happy little boy that he was. Plus we get to keep him with us. The more I thought about it, the more the cemetery thing just creeped me out. I got to chat with many parents who've lost a child and many who buried regretted the decision and everyone who cremated was happy with it. Thankfully money was not a factor in any decision. Thanks to so many donations we were able to get it covered.

The lady we met with was very nice. I asked if they've done many child funerals and she said no, usually kids this age don't die. They see many infants due to birth problems, SIDS and other things, then they really don't see many kids between 1 and 15. After that kids are driving. It was tough choosing things because what she said was so obvious. In the "infant and children" book there was mostly very baby themed things. Then they really had no children's urns, just for babies and adults. I told her I would get one myself online. We went over all the options, the guestbook, flowers, etc and decided on those things. The only thing I really had an issue with was that for the cremation she was required to explain the process and have us sign that we understand. I know what they do, in general. I really didn't need the details! I am a visual person and that just makes things even harder. The only problem we ran into was that the funeral home, which brags to be the biggest one around, only holds 100 people for services and only holds 50 people for a luncheon. So we set it up at the church my MOPS group uses and that is working pretty well so far. We're meeting with the Pastor and his wife on Thursday to figure out the details of the service. Today we were back at the funeral home to give them pictures for the slide show and create the card for the service. The main holdup has been the Pastor being out of the country. He'll be back wednesday night and we're meeting thursday. It seems so last minute. I also have to prepare a eulogy and decide who's going to do that.

Right now we are going through the motions, getting done what has to be done with the funeral planning. I've needed to do laundry since we got back Thursday and it still isn't started. I've needed to unpack more too and nothing has been touched. I don't feel overwhelmed, just unmotivated and numb. I've been meaning to take Dawson to a park, but haven't been able to. It has been cold out though, so that's a factor. He has this lingering cough from the cold he had and now this morning he woke up with his eyelashes caked with goop and his eyes were red. Took him to the Dr today and they confirmed that it's pink eye. I have some ointment to put in his eyes 4 times a day. Not fun! He was ok when I told him it would make his eyes feel better, and I asked him to lay down. He did! I told him I had to put it on his eye to make it better and he was ok with that. Until I started doing it. He really didn't fight as much as I thought he would though and once it was done he stood up and we just focused on the thought that it was all done and that his eyes are going to feel better. He didn't like the clinic much. He's used to going, but not as the patient. He did his usual thing, looked for a sucker and wandered around the room. He didn't like being put on the table and said "No! Tyler's turn!". He did hold still a bit when I told him they need to look at his eyes, nose and mouth.

This evening we got invited to go rollerskating and decided it would be good to talk to some friends and relax a little. Thankfully the friend who's been watching Dawson the last few days was happy to come babysit while we de-stressed. It's weird living on this side of town, the roller rink is only a few minutes away now! The 90 minutes flew by so fast. It was nice to get out of the house for something besides the funeral home though.

I have 2 Children

This is going to take a while to wrap my head around and break old routines. I have 2 kids in diapers instead of 3, I have an empty carseat in the back of my van. An empty booster chair at my table. An empty bottom bunk bed. A dresser that is no longer used. Food in my cupboard that only Tyler would eat. That's just the physical things. I've gotten used to not having him here. He wasn't with us at RMH, he's been in the hospital since Sept 6th, so that is not very weird. Except I am home now, so thoughts keep creeping into my head. We went to Walmart today, I found myself looking around for the special cart that holds 2 toddlers and realized I no longer need it. Then later I was thinking about the memorial services, wondering what I'm going to do with Dawson, who will not sit still for long at all. I'm betting 5 minutes tops. So then I think I'll just find 3 designated people to watch the kids while I'm mingling with the crowd. As I'm thinking of who all to ask, specifically who to watch which child I realize... I don't need 3.

There's always many people who say "oh he's with you, he never left". Come over to my place and see the empty spaces and see what you think. Perhaps the change won't seem big to most, but to us they stand out. Life with a 2 year old is busy, noisy. Remove that noise and it is very weird. He's no longer tearing papers off my table, tossing food on the floor, pudding mac n cheese handprints on my window or running down the hall with the end of the toilet paper roll hoping to make it to the end of the place without it breaking off. I see no big smile waking me up in the morning and doing our usual hour of cuddle/nursing time before we get up. I have no morning IV flushes and no bedtime meds to give. He may be with us in spirit and his memory will always be with us too. I will mention him if anyone asks about my kids. There's not a moment where I'm not thinking about him. But he is not actually here. Huge difference.

Our Life has Changed. Again.

I never thought I'd be here. I was going to come back with a great transplant story and a happy little boy who would be cured and live a long happy life. Instead our plans have once again been changed. When Tyler was first diagnosed that it was horrible. Our life changed for the worst and suddenly there was so many medical things to learn and my baby was sick. My whole life was suddenly all about medicine, hospitals and appointments. Annoying, but necessary to keep my baby alive. When Tyler finished his first 6 months of chemo I breathed a huge sigh of relief. He had made it past the worst. Anything else from there was tolerable. Appointments, meds, feeding struggles. Who cares, he was home and happy. We were all happy.

When he relapsed I was somehow not very surprised. I felt it coming. He was in the highest risk category and the other kids in our online cancer group had been relapsing too. The 3 months of chemo after relapse was very tough. Then transplant time came and finally there was a countdown. Only 100 days until I'm home with him for good. Sure there were risks, but there are dozens of little kids running around the Ronald McDonald House after having their transplants. If they can do it, my Tyler will have no problem. He did great for the first week, they even said one day "wow, maybe he won't even have many problems at all". Then things went downhill. He was admitted to ICU because he had too much bleeding and it got in his lungs. Not a huge deal, just needs some time to heal. A machine will help him breathe as we wait for those white blood cells to produce and work their magic. Heal those sores and bounce back to the 4th floor. Then he was retaining fluids. His liver went bad, followed by his kidneys, adrenal glands. He started to make progress and we were so relieved. He was going to pull through this, no doubt in our minds. He's been close to death before and pulled through. He always does, Tyler is a fighter. Before I knew it he stopped progressing and they were suddenly saying he was probably going to die. I couldn't wrap my head around it. This is Tyler, he pulls through, he always does. Yet things continued to get worse and we watched as our precious Tyler slipped away. They brought him back once after his heart stopped, but his body couldn't handle any more. His pupils got unresponsive, indicating no brain activity. He'd been on the breathing vent and sedated for 5 1/2 weeks. The day came to say goodbye and I finally got to hold him. One more time. Other moms have written about feeling their child's last heartbeat. I couldn't. His heart was still going, but was too weak and barely moving, not enough to feel it through his chest. He took his last breath and I was sad, but relieved that he was no longer suffering. Nov 2, 2011. I don't know how I walked out of that hospital empty handed. We were both in a daze. We sat holding him for an hour, then didn't know what to do. It was ackward. We didn't want to leave Tyler. Ever. We had to sometime though. A friend stopped by and we ended up going to the lounge to visit. Without her we would've still been sitting there for hours I think! We visited and it was a breath of fresh air to be out of the room, but knowing he and our stuff was still in there, we were mostly ok leaving the room. When we finally packed up and left, there was a mom I'd talked to earlier who was watching for us and walked us out. We managed to drive back to RMH, I somehow typed my Caringbridge post while it was still fresh, mostly wanting to get it out of the way so I didn't have to re-live it tomorrow as well, and promptly went to sleep.

The next day I had a plan. First I had hoped to wake up to find that was all just a horrible dream. Unfortunately that wasn't the case. We sent Dawson to the Autism Center for his last day, so his stuff could be returned with him and he could have some normalcy. I then planned to sleep in, shower and pack. I did sleep in, but I never got the shower and I didn't get too much packing done. Thankfully we had done a bunch several days back of stuff I wasn't using anyway. Then my cousin packed a bunch more the day before. I had a friend visit, which was great. It took my mind off things and got me going. Then 2 more friends arrived as planned to help us move back home. We got our stuff all packed up and loaded into the vehicles. Had our last supper at RMH, said our goodbyes and left. As we got onto the freeway, Dawson got excited. "Go see Tyler!". It was hard driving past the hospital, knowing Tyler was there, but not really. Knowing that I would never return and that part of my life, the current biggest part of my life for the last 2 1/2 years, is over. I was dreading going home, seeing his empty bed and his toys all over the place. I had posted on facebook that I could use some help moving back into our apartment. I was so weary and tired I just didn't think we could do it alone. Thankfully we got amazing help. People came, at 9pm and not only hauled everything up to our 2nd floor apartment, but also did dishes, cleaned up the toys and helped unpack some things! A friend had sent a lot of groceries, so those all had to find a home. My kitchen is now overflowing with food between the 2 people who brought some and I just found out tonight we have more groceries coming tomorrow. Amazing. By 11pm we were both exhausted and weary. We had 3 people left and we decided we needed to sleep, so they left. Gabriel had some issues getting to bed, he wasn't sure where we were. He fell asleep with me, but I did get him transferred to his crib.

The next morning we woke up and realized things were the same. We wake up, realize again what has happened and just don't want to get up. Thankfully I have Gabriel, who I can't ignore. He makes me get up, change and feed him. He makes me smile at him and keep him happy. His smiles are contagious. Then a few moments of happiness pass and I remember that I'm not supposed to be happy. Tyler is gone, am I allowed to smile? Probably not, it's weird. It feels wrong. How can anything be happy when my most joyful child is not with us anymore? Then Gabriel smiles again and I realize that Tyler would want me to be happy and would want his brothers to be happy. They deserve to be happy. Plus I promised Tyler I would be ok. It was part of my plea for him to get better or be done suffering. Still feels weird though.

I called the funeral home and they set us up with an appointment for Monday, Nov 7th. I thought it would be sooner, but he had to talk to people at the hospital first and they aren't there on weekends. It did give us some time to think about what we want first, we've been back and forth about what to do. I went online for a while, reading all the supportive messages, emails, facebook posts, etc. I had 1200 emails and about 100 friend requests. I looked through and chose the ones I knew were part of my new group, the grieving mothers. I don't know what I would've done without the other grieving parents who know what we are going through. Their messages, just knowing that the different feelings are normal, is very helpful.

I've had talks with Dawson. The Child Life lady gave me a book on how to answer questions. Only the preschool section is just a short paragraph that in summary just says that children of this age don't understand death. They think it's a temporary thing if they acknowledge it at all. They recommend to keep explaining things, looking at pictures and keeping his memory alive. I also have a couple books for kids of his level. Dawson liked the pretty clouds and other pictures as it described where you go after you die. He had no understanding though. I told him Tyler is gone, but that's not news to him, Tyler has been in the hospital for months! I told him Tyler is no longer hurt or sick, then Dawson said "go to 4". I had told him when Tyler went into the ICU that when he got better, he would go back up to 4th floor. I told him no, he is gone, he went to Heaven. He said "no" and walked off. He didn't sound upset, he was just done with me talking nonsense and wanted to go play. He's been watching Tyler's videos too. He can sometimes get obsessive about them. Once he starts, it's hard to pry him away from them. I've been using the transition preparations that his school does and that really helps. I said 1 more video, then all done. After he'd been watching them for quite a while. He likes repeating parts over and over. A word Tyler said, a giggle, etc. It's weird being in the other room and hearing Tyler's voice, even though I know it's coming from the video.

Today my mom came over and we got 4 poster boards done. Then the 4 of us (will take a long time to get used to that number again) went to the Pizza Ranch benefit that our friend set up for us. There was a line out the door and down the sidewalk. It was amazing to see all the familiar faces. I wasn't sure how I would handle it. The first time I went somewhere was Friday. I cashed some checks and went into Toys R Us for something for Gabriel's crib. I wasn't in there 5 minutes and there was suddenly a little blonde 2 year old boy in front of me with a huge grin on his face holding a Cars toy. Instant tears. I decided that was not the best place for a first outing. The benefit was different though. There were children there, but there were so many people I knew and I got so many hugs. I didn't even cry. I wondered if that was weird, or if the people noticed. I've had 2 1/2 years of practice with not crying in front of other people. I save it for later, it's just what I do. Most of the time.

The last few days have been tough. It's hard to describe this feeling. It's like an elephant is sitting on my chest. Another mom described it as drowning or being suffocated. My heart physically hurts at times and I often have moments where I can hardly catch my breath and I had just been sitting on the couch or something. During the day I have the pain, but less tears. The kids keep me pretty busy. Then when I'm alone, the faucet gets turned on. The bathroom, shower and bedtime usually. Knowing I have just spent another day without Tyler and knowing I will wake up an have to do it all over again is hard. People ask me how I'm doing and there are times where I wonder if I tell them the truth, if I'll end up in a padded cell someplace! I will be ok. It will not be the same level of ok that I was before, but as others have said, you learn to live with the pain and let life continue on. I just wonder how long it will be before I get to that point. It has been 4 days without Tyler and it feels like it's been 2 weeks.