Friday, June 30, 2006

Living without Alex 6-30-06

FRIDAY, JUNE 30, 2006 12:20 PM, CDT
Last night I had a dream that I was running around this big city and I couldn't find my way. I was afraid, lost, but refused to give up. I woke up and kind of chuckled how that dream so truly reflects the past 5 months.

It's hard to beleive that Alex would be 5 months old now. He would be a "real baby" as I like to call babies that are no longer lazy newborns, but are playing and learning. I cannot picture him 5 months old. He is truly forever a newborn to me.

I've been very busy. The parade preparation is taking a lot of my time. Bears had to be shipped yesterday, summer in a tourist town is hectic anyway. The kids have been running from one summer school activity to another.

Wednesday I had lunch with another heart mommy. The first I've met in this area. It was so nice to just talk and have someone actually GET what I was talking about! Thankfully her sweet daughter is a survivor, but it seems she still went through some feelings of loss, loss of the child they excpected maybe. No one ever really thinks thier child will be born sick, especially when the pregnancy doesn't indicate anything like that. Anyway, we are going to work on implementing a support group in our area.

Well, the work is never done!

Sunday, June 25, 2006

post moved from Alex's blog 6-27-06

TUESDAY, JUNE 27, 2006 11:42 AM, CDT
I'm feeling a bit better about things. Well maybe not so much BETTER about them, but I'm able to distract myself pretty easily.

We are going to be in the local 4th of July parade for the Bubba's Bears project. Due to mis-measuring I get to dress up as the big blue "Bubba Bear" instead of Hailey, joy! So, pray for cool weather!! It'll be fun though, were gonna have quite a few people with our group, we'll have a little "float" with a Big bubba's bear on it and then the kids will hand out Candy and my friend and I will pass out blue and red keychains. We'll be playing Laurie Berkner music so the kids will get a kick out of it all.

Yesterday we recieved our official documents stating that we are, in the eyes of the law, licensed to "practice the business of charity" hehe. It's nice to finally be all recognizable and legit.

Well I'm off to pick up the kids from summer school and then to work more on the parade stuff!

post moved from Alex's blog 6-25-06

SUNDAY, JUNE 25, 2006 01:26 PM, CDT
I'm finding myself asking some hard questions today, questions that I don't have the answers for. Questions that I'm not sure I WANT to answers to.

Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...

Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.

I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?

That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?

In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.

I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.

Friday, June 23, 2006

Post moved from Alex's blog 6-23-06

FRIDAY, JUNE 23, 2006 06:06 PM, CDT
Upon learning that children will be soon having a new sibling, most kids will speculate as to whether the baby will be a girl or a boy, or in the case of Shaylin, will declare her hope that the baby will just simply be cute. However my children, instead now just say they hope the baby will be healthy.

Innocence is something we take for granted with our children. We watch them learn and marvel over butterflies, the moon, clouds and take simple joy in thier experiences. It's very difficult when a part of that innocence is taken from your children, through no fault of anyone it's gone, forever.

I first became aware of this at the Ronald Mcdonald house when one day as I was sitting by the fireplace watching Shaylin and Jacksen play with thier little friends, I witnessed a game that both interested and saddened me. The game involved a baby doll and the children played out the scenario that the baby was sick and needed an ambulance, when the ambulance arrived these children, the oldest a mere 6, began putting "lines" in the baby and instructing each other on life saving measures.

My children now worry about things that are far beyond the imagination of most children. They worry if thier new sibling will be healthy, if he or she will live. They confront thier own mortality...... if babies can die, then children can too. They now know that people die and go away forever, aside from Jack who insists that every pair of baby shoes we see at the store would looke insanely adorable on "baby wex".

As sad as it is, there are also blessings involved. My children have a much greater appreciation for thier safety and thier lives than most other children. The families and special children we met at the house have shown them that people may not always be like them on the outside, but that's ok. They don't see things in black and white anymore. The fact that they know that nothing is forever, makes them more inclined to make the most of every day and to appreciate what they have been given. And that is a lesson that as parents we cannot teach, it's a lesson only learned through experience.

Thank you "baby wex", for helping show us ALL the way.

Thursday, June 22, 2006

post moved from Alex's blog 6-22-06

THURSDAY, JUNE 22, 2006 02:54 PM, CDT
It's not often something can send me back to that place. The sobbing mess on the floor place. It happened this morning.

The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.

It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!

Monday, June 19, 2006

post moved from Alex's blog 6-19-06

MONDAY, JUNE 19, 2006 04:04 PM, CDT
Once again I need to ask for your prayers. This time for a little sweet girl named Ashley who also has a special heart.

Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.

Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.

Saturday, June 17, 2006

Post moved from Alex's blog 6-17-06

SATURDAY, JUNE 17, 2006 09:18 PM, CDT
I don't really know what to write in here anymore. My thoughts and feelings seem clouded lately. Not a day goes by where I don't think of Alex and I don't expect that will ever change, nor do I want it to.

So many people take for granted. Take for granted that they will give birth to a healthy baby and take that baby home, that they will watch that child grow and learn. So many people just expect that thier child will be here tomorrow. Of course they do, they haven't seen what i've seen.

I ask you all to pray tonight. For a sweet little girl named Tiahna that is in the U of MN hospital fighting for her life from Leukemia. Such a beautiful baby. Her parents received some disheartening news today, the kind of news that really sets you back in the knowledge that your child might not live through this test. Not that I'm sure they've ever forgotten it, but sometimes you let yourself drift to the other outcome and by the grace of God you can keep yourself there in that happy place of "my child will come home". And then things change and you have to look in the face the possibility that kids DO die. They die suddenly, they die after long illnesses, they die because of mistakes, accidents, murder. Children die. Treatments sometimes can't work and we fight with God for our children until the time comes to realize that these children aren't ours to keep and it's a fight we can't win. This is a hard reality to swallow for anyone, but when you are the parent of a child who might die, the feeling is undescribable.

I'm probably not making much sense tonight and that's ok. My heart is heavy tonight. I feel like since Alex died death follows me. Although I may not always personally know the children or thier families, children dying is everywhere I turn. Sometimes I wonder if it's me lol maybe i'm bad luck or something. I wonder why God lead me to this place I stand right now. What purpose does it serve to keep death in my sights? What do you want me to do with this wisdom and knowledge that you've given me through the life and death of my dear sweet son? I pray for direction

Tuesday, June 13, 2006

Post moved from Alex's blog 6-13-06

TUESDAY, JUNE 13, 2006 12:01 AM, CDT
So I didn't go to Tyler's funeral on Saturday. I won't elaborate.

I'm really glad that I got pregnant again so soon. I find myself being able to see babies again without being so sad, I almost ALMOST was able to go into the infant department at walmart today........ big step.

I have however been feeling a little guilty. I look at Alex's picture on my computer desktop and I just search his little face and try to remember him........ my memories are so hazy and I hate it. I can't remember anymore his smell, I can barely remember what his fuzzy hair felt like. I vaguely remember the way he scrunched his face up during his silent cries. I find myself angry about that. If I can't have my baby why can't I have my memories at least? Why do I have to lose those too? Sometimes I look through the photo album at the pictures of him and I can remember the day, but I can't remember that moment the picture was taken. I can't remember how it felt to hold him. It's frustrating.

Friday, June 9, 2006

post moved from Alex's blog 6-9-06

FRIDAY, JUNE 09, 2006 10:00 PM, CDT
Tomorrow is Tyler's funeral. I'm a little nervous still waiting for the part of this that's going to suck me right back to losing Alex and tear me apart. So far, so good though.

Yesterday we had a bbq at my moms for Craig's birthday. It was a beautiful day and we spent the day just being lazy and watching the kids do 'stupid human tricks' as my sister liked to put it....... you have to understand, her sense of humor is even more left field than mine (corrected the I before E thing there Jana, in case you ever read this aren't you proud?)

Today we went to the MN zoo and had a blast. Allen snuck out of work and joined us and we made a day of it. After we went and saw a IMAX 3D film which was awesome, it was hilarious to watch Shay and Jack (who have never before even been to a normal theater) reach out and try to touch the 3d pictures. I'm not sure the poor man in front of Shay appreciated it much though. They would get scared at the jumpy parts and then just giggle like insane little elves lol

I noticed about halfway through the day that although I still find my eyes wandering toward babies, especially newborns (since Alex will forever be one in my mind, even though he'd be over 4 months old now) I don't look at them and feel that overwhelming sadness I use to.

It's amazing how the heart can heal. The problem I battle now is how much healing is fair and how much should I make myself feel guilty for if that makes any sense. I like to beat myself up when life is going well for me I guess and I need to stop doing that.......

Wednesday, June 7, 2006

Rest in peace Tyler 6-7-06

WEDNESDAY, JUNE 07, 2006 04:56 PM, CDT
Last night I had the honor of being in attendance as Tyler earned his wings and went to be with God and Alex. It was a very moving, spiritual experience. The 'wonder twins' are together again, for eternity.

Godspeed little Tyler, I am forever grateful for the opportunity to know you.

Monday, June 5, 2006

Post moved from Alex's blog 6-5-06

MONDAY, JUNE 05, 2006 08:53 PM, CDT
As when Alex was in the hospital, no news is good news. As we heal, this journal becomes less needed as a venting place for our pain.

Things with Bubba's bears have been plugging along. We are getting a growing number of bear requests and I'm happy to be putting the time into this. As soon as I get all the bugs worked out I can start handing more off to the many people who have volunteered to help with it, which is going to become a welcome break since it really has become a full time job and I find myself pretty exhausted at the end of the day sometimes.

Today miss Shaylin graduated from her pre-kindergarten program. She was a doll in her little cap and gown and they always just make those things absolutely adorable, you can't help but get a tear in your eye........ go class of 2019!

Tomorrow is the last day of school for all the kids. This school year has just flown by with everything that has happened. It's kind of strange how this time last year we were in exactly the same place in a lot of ways as we are now. Expecting a baby, preparing for summer with 5 active children keeping us busy with summer school activities. The only thing that is so very different is that we are different people than we were. It's strange that such different people are living the same life.

Of course it's not the same. It will never be the same. But to all outward appearances it really has to be. We are showing people that we can survive, our family has taken a hard hit, but we will stay together and be stronger than ever.

Friday, June 2, 2006

Post moved from Alex's blog 6-2-06

FRIDAY, JUNE 02, 2006 12:07 PM, CDT
So, someone stole the flowers off Alex's grave that my mom put there for memorial day. How nice is that? Stealing flowers from a deceased person is bad enough, but a BABY? Do people have no morals?

Otherwise, things have been going well. Bubba's bears is keeping me busy and I like that it does. Craig has even learned how to do the bears which is a great help! It's neat to see the pictures we get of kids with our bears all smiling and happy.

Asking once again for your prayers today. For Luke, who is being extubated today for the final time, if he struggles too much they are going to give him a tracheostomy, so please say a little prayer that he does well and doesn't need one.

And for Tyler. His family isn't getting very good news about his prognosis and may have to make some difficult decisions soon. Please pray that the doctors can find some way to turn things around for him, and if that is not in God's plan, pray to give him and his family some peace.