Five kids at the park

Today was a gorgeous day. Finally sunny out, so I decided to head to the park. I loaded up my boys, picked up 3 extra kids on the way, and arranged to meet a friend there with her son. I got to the park to find the gates were closed. There were quite a few people there, but they weren't allowing anyone to park down there yet. Not a clue why, and I almost went somewhere else but decided to stick with the plan since it's my favorite park. The walk is good for us all anyway. It's actually a long windy driveway, downhill on the way down, but getting back up can be tough. I figured the kids could use the exercise anyway. I had thought of putting the double stroller in the van, but decided it wouldn't be needed. Oops! It went well though.

Unfortunately my friend couldn't join us. She couldn't find parking, then her rear brake hose blew out and she barely made it home. Her brakes were so hot that it melted the hubcap! So after we brought the kids home, Dan and I went and brought her car back to our place so he could fix it.

Gabriel wasn't really big on playing today. He decided to hang out in the stroller and have a snack. He liked watching the girls swing and run around.

 Managed to get them all to stand in 1 spot for a pic.

 Gabriel was super excited to watch the ducks and the kids playing by the river

 The girls hadn't been here before, they were pretty impressed. They started out by throwing rocks into the river.

 Then they decided to stand on a rock

 We watched some ducks

 Dawson loved the rocks. He did slip and fall totally on his butt once though! The water is very shallow there.

 The rock stepping ended up with wet shoes, so we ended up taking off the shoes and hiking up everyone's pants so they could wade in the water.

 Thankfully everyone listened very well and followed the rules of not going past the rocks.

Even more surprising, I had no complaints when we had to leave the park! I was seriously shocked. There's usually whining, crying and screaming, but they were hungry and wet. So we climbed the long hill back up to the road. I ended up pushing the stroller and carrying the 2 year old, so I got my workout for the day! We went home, changed into shorts, put the pants and shoes on the balcony to dry while they played for a few hours. I hadn't planned on bringing them back to our place, but I wasn't about to send them home super dirty. We even made some cookies for their mom. The girls loved helping with that.

We brought the girls home and I even got to hold the baby again. I showed the baby to Dawson and he got so excited and all mooshy. "Girls have a baby!"  He even had that face that moms get when they see a new baby. It was so cute. Then he asked to hold the baby, even had his arms all ready for him. So I gave him the baby and he started cooing at him and shooing my hands away. Thankfully he allowed he to support the head still. He even gave him a kiss. So adorable!

A Baby is Born!

My friend Sarah, who's kids I often watch, called me Wednesday morning saying she's in labor! So as planned I went and picked up 2 of her kids. The other 2 went to a lady from her church, to spread out the load. Plus if I took them all, I wouldn't be able to fit everyone in my van. So we had her daughter Rain who is almost 5 and her son Alchemy who is 16 months. It's crazy how exciting a new baby is. It's not even by baby and I had to call my mom because I had to tell someone the exciting news! The kids had a great time for the most part. There were times of missing mommy. The little guy had a harder time the first day and her daughter had a harder time the 2nd day, but overall it really wasn't bad. They spend a lot of time here anyway so thankfully they are used to us.

Eating breakfast Wednesday morning. The babies loved having eachother around! They woke up with big smiles and followed eachother around the entire 3 days.

 Buddies

 Having some banana bread for a snack before bed

 Gabriel walking! He is all over the place now. I never see him crawling. He stands up in the middle of the floor and just keeps going.

 Buddy is quite the climber! Gabriel had better not get any ideas. ;)

 Thursday morning was amusing. The little guy had kicked his sister out of bed. I had put him next to the wall to protect him from falling out! The next night he just slept sideways toward the end of the bed. Worked much better.

 Gabriel walking around. Always smiling and so proud of himself. :)

 My friend Katie came over with her daughter and brought a cookie making kit! That kept them entertained for a while.

 Dawson's cookie

 Rain's cookie

 Buddy was excited to get a cookie too.

 The boys were very "helpful".

 Buddy chilling in the evening. Gonna miss this little guy! He's so adorable, went to bed without a fuss, really never cried for anything. Even Gabriel already misses him.

 I've been ordered by many to get a pic of the cute baby, so here he is. :) Astronomy was 10 pounds, 11 ounces! Mommy needed a c-section. Please pray for her as she can't lift anything and now has 5 kids under 5 to care for. I've never had a c-section, so I can't imagine! It's hard enough to care for them after a regular birth.

We returned the kids at 6:30pm on Friday. I got to hold the new baby too. He's so cute and reminds me a lot of Tyler, my 10 pounder. :)

This was Tyler at 2 days old. He came home in a 3 month sleeper. Thankfully I had brought one, just incase!

He was pretty dark, bruised on the way out and a bit jaundice too.

Been missing my little guy more lately, as the weather has been nice and we always took advantage of nice days. Rain made me smile the other day. She was making sure to tell the therapists that Dawson used to have 2 brothers. I thought that was so sweet. I wasn't sure if she knew. I love it when parents share those things with their kids.

Autopsy Results & Grief Wish List

We got a call from the transplant Dr today. I knew the number when I saw it and hearing his voice was as familiar as if we were just there yesterday. He apologized for taking 5 months to call me. He's a very busy researcher but he still felt bad about it. The report wasn't ready for a while and then he'd forgotten about it. I'm getting a copy of the results in the mail as well. They checked for Leukemia and none was found. They checked for Adenovirus and that was gone also. The primary cause of death was VOD (Veno-Occlusive Disease) which is liver failure. It was more severe than we all realized. He had fluid around his lungs, which we knew and is a side effect of the VOD. The only thing they found that we didn't know about was bleeding in the lungs. He said it's common for people on ventilators for a long time.

He said there was nothing we could've done. We made all the right decisions and it all just comes down to Infant Leukemia being very difficult to cure. Since Tyler died, I've known of 4 other Infant Leukemia kids who have died in the last 5 months. It's not fair at all. To suffer through treatment is horrible enough, but to have no reward for all that and to have to live without them is so much worse.

It all just sucks! Getting that call just brought me right back to where we left off in the hospital. It was weird getting an update and knowing this is the last update I'll ever get. This is how it ended. I hate how bad everything got and I just hope he was on enough meds not to feel any of it. It still feels like a bad dream sometimes and I get those sudden moments of realization that he's really actually gone forever and it all hits me like a brick wall all over again.

I found this on another grieving mom's caringbridge site. It's all so true!. It's tough to deal with people who don't try to understand. I know that it's impossible to truly understand, but some have just lacked compassion and even told me to stop mentioning him. I sure hope they never have to truly understand this pain. I don't need a pity party, but sometimes I just feel the need to post a pic because it feels good to see his face and talk about him. I share things in hope people will gain understanding and know what we are going through. He is still part of our daily life. What we talk about, have to explain to Dawson, have to wonder about, the things we miss. There isn't an hour that goes by without thinking about him. Thank you to all who have stood by me through all this and been so supportive. The things people have done for us will never be forgotten and have truly made our lives much easier!

A Bereaved Parent's Wish List
(Author Unknown)
I wish my child hadn't died. I wish I had him back.

I wish you wouldn't be afraid to speak his name. He lived and was very important to me. I need to hear he was important to you also.

If I cry and get emotional when you talk about my child I wish you knew that it isn't because you have hurt me. His death and absence is the cause of my tears. You have talked about my child, and you have allowed me to share my grief. I thank you for both.

Please don't remove his pictures, artwork, or other remembrances from your home. It helps me to know you want to remember him too.

Being a bereaved parent is not contagious, so I wish you wouldn't shy away from me. I need you now more than ever.

I need diversions so I do want to hear about you: but, I also want you to hear about me. I might be sad and I might cry, but I wish you would let me talk about him, often my favorite topic of the day.

I know that you think and pray for me often. I also know that his death pains you, too. I wish you would let me know these things with a phone call, a text, a card or note, or a real big hug.

I wish you wouldn't expect my grief to be over in six months. The first months are traumatic for me, but I wish you could understand that my grief will never be over. I will suffer the death of my child until the day I die.

I am working very hard on my recovery, but I wish you could understand that I will never fully recover. I will always love and miss him, and I will always grieve that he is gone.

I wish you wouldn't expect me "not to think about it" or to "be happy." Neither will happen for a very long time.

I don't want a "pity party", but I do wish you will understand when I have to grieve. Sometimes you have to hurt before you can heal.

I wish you would understand how my life has shattered. I know it can be miserable for you to be around me when I am miserable. Please be as patient with me as I am with you.

When I say, "I'm doing okay," I wish you could understand that sometimes I don't feel okay and I often struggle daily.

I wish you knew that all of the grief reactions I'm having can be completely normal. Depression, anger, hopelessness, and overwhelming sadness are all to be expected. So please excuse me when I'm quiet and withdrawn or irritable and cranky.

Your advice to "take it one day at a time" is excellent advice. However, a day is sometimes too much and too fast for me right now. I wish you could understand that I'm doing good to handle an hour at a time.

Please excuse me if I seem rude sometimes; it is certainly not my intent.

I wish you understood that grief changes people. When he died, a huge part of me died with him. I am not the same person I was before he died, and I will never be that person again.

I wish very much that you could understand my loss and my grief, my silence and my tears, my void and my pain. BUT I pray daily that you will never have to understand.  

9/19/2011, 4 days after transplant and 4 days before he was sedated for the rest of his life.

Healing and Helping

It's been a long weekend of meds, coughing and feeling yucky. Thankfully the worst appears to be over. The kids and I are still on inhalers every 4 hours and Gabriel takes the last of his steroid in the morning. Poor boy has been moody, irritable and overall just feeling yucky. Especially in the morning. They wake up all clogged and coughing. Tonight I'm going to attempt the inhaler while they're asleep so they can get a dose to keep breathing better and hopefully not feel so bad in the morning.

It's been a long day with no therapy since we're sick. They had no school anyway, this was supposed to be our fun spring break. We have had some company though, Megan and Bali have been over for the last 2 days. They actually spent the night last night and tonight too. Bali just got out of the hospital and there are lots of drugs right across her apartment and that smell is getting into their place. Since the Dr's orders were to make sure he isn't around smoke for a while, they decided to stay here instead where they are safer so he can heal. Thankfully today he was finally feeling good enough after a week to start eating and was happier. They are working on getting a better place to live. So frustrating for them. I can't imagine being a single mom. Thankfully the boys all like having eachother around. Dawson woke up this morning and said Bali!!

 Gabriel giving him a kiss.

Gabriel has been walking all over the place. He stands up in the middle of the room. When he falls, he just stands right back up and keeps going. It's crazy seeing him just walking around all the time now. He's very proud of his new skills and is getting so much better each day. He has even mastered the transfer from carpet to kitchen, that metal strip bothered him before. Also turning around isn't as troublesome for him either. He's going to be running around this place in no time!

Dawson had a frustrating, boring day. He was getting into some things and being generally restless. It was cold outside, so we stayed in to protect the lungs. I'm really hoping he'll be coughing less tomorrow so we can have some therapy come work with him.

Having a friend here is rather nice. I had someone to chat with while Dan was at work. It was his 2nd day of work and he's really enjoying it. He puts together engines at Arctic Cat. They are working mandatory 50 hour weeks! She got a relaxing bubble bath and after Dan got home we ran some errands without the kids. So much faster that way! She has a meeting with someone tomorrow about getting a better place to live.

I worked on cleaning the boy's room for a while today. I got a box of medical papers and things gone through and sorted through a few other things. At least 1 box is empty. I was really on a roll until I ran across Tyler's little broken leg shoe. It looked so tiny and just reminded me of how brave he was. He rarely fussed about having a broken leg, he just adapted and figured out how to keep going despite the cast.

Dawson likes having Tyler's bed emptied out again. I had been storing some things in there, but now Bali has been sleeping there. Dawson crawled in and was grinning.

 Since I was cleaning their room, of course that was the place to be. Even though we only use the room for sleep and they are never in there otherwise. Unless I'm trying to clean of course. :)

2 year olds are the best helpers. I've learned I now have to make sure there's nothing in my milk jugs or cartons before I throw them out. I had to cut open and retrieve several pieces of silverware from them today. Never a dull moment! Makes me miss my rambunctious little guy.

Bronchiolitis

It's been a very long several days. We've been watching Megan's son Bali a lot and he came down with a respiratory infection. We caught it before he was diagnosed, so we've all been pretty miserable. On Thursday Gabriel and I went to the clinic. They refilled my inhaler and gave Gabriel steroids for his lungs. He also has an ear infection so he got antibiotics for that as well. Thankfully that took care of the fevers, but his cough got worse. This morning I took Gabriel to the ER and they did a chest x-ray, RSV test and monitored him for a bit. They ended up giving him an inhaler too and sent us home. Such a relief! I'm not ready to be in the hospital again. Even visiting Bali, who had to be admitted due to dehydration, was tough. I was holding Bali and Gabriel, and it just reminded me of how much I miss cuddling in the hospital.

He was happy to have visitors. We stayed for 4 hours on Friday and 2 hours Thursday evening. I didn't bring the boys on Thurs because I wanted to give her a break to go home and get some things she forgot.

 The inhaler we got. I was trying to explain it to people so just decided to take a pic. The inhaler goes at the end and the chamber allows it to form gas and be breathed in, since they don't understand to inhale and hold their breath.

 Starting to look like a pharmacy here again.

 Sleepy baby. He slept about half the day. This is really wiping him out. When he's not sleeping, he's usually cuddling, but he was walking around, smiling and giggling for a while. It cracks me up about the pillow. He likes sleeping with his head up against something. It was the crib rail. So I put a super thin pillow in his crib, so now he sleeps against that. At least it's soft. :)

 Dawson's reward page we use. His therapist made it and he finally understands the cause-effect thing better. So he knows that once he gets all his cars on the page, he can have his reward. Sometimes we work for a treat, or to play something specific, computer break, movie, etc. He gets cars for doing good things. Being nice to Gabriel, listening to a direction. It depends on the day, how difficult he's being. On harder days he'll get one just for coming to me when I ask him to. That gets his mindset excited about getting that reward and sometimes gets him a little more agreeable. We took this with us to Target and he even held my hand willingly in the parking lot. That has never happened! They are going to give me a smaller one to travel with so I don't have to bring along a big folder.

 2 good buddies playing in the toyroom

We are stuck at home over Easter because of our respiratory infections. My mind has also been on last Easter. It was the day we packed up and headed to the cities. We stopped and did Easter at my Grandma's house on the way there, then continued to a hotel near Children's so we could be in town to get admitted in the morning. Being a year past the beginning of the end is causing more anxiety. So many memories and so many dates that will always stand out to us.

Our last year's Easter pics. Tyler cuddling with Daddy at bedtime. He looks so little!

 Watching cars out the window. I forget he had so much hair!

Today at the ER I had an interesting experience. The pulse ox is a picky monitor sometimes. It has to be tight around the finger or toe to pick up a reading. Gabriel had it on for monitoring his oxygen level and heartrate. It was being picky and kept losing signal. I was happy to finally be told we could leave so we could take it off. I put Gabriel in the stroller and was packing up our other stuff. Suddenly the monitor started beeping again. Nobody was near it. It picked up a normal heartrate and 100% oxygen. After about 20 seconds it cut off. We walked out and saw a bald boy wearing the green cancer mask. It was hard seeing that reminder of our old life. I miss it. Mostly the little bald boy.

I got a text from a friend tonight who said she was talking to someone and out of the blue she said Tyler is ok. She had no clue where that came from or why she said it, but she just had to tell me. I found it ironic since the mysterious monitor this morning showed perfect stats. So I'm trying to concentrate on the fact that he is ok, and he will never suffer again. I just wish we didn't have to suffer so much missing him.