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!

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.

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.

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!

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.

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.

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.

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.......

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.

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.

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.

Post moved from Alex's blog 5-30-06

TUESDAY, MAY 30, 2006 02:38 PM, CDT
Now that the news has really started to sink in I find myself torn. I am very excited but I'm SO scared. I'm not so much scared of them finding something during the tests they will do when I'm pregnant , I'm more afraid they will miss something and we'll think once again that we've just had a perfect healthy baby and then he or she will get sick like Alex did unexpectedly.

I guess this is normal. And we won't breathe easy until after the baby is born and we get an echo done to be sure there is nothing wrong

Moved from Alex's blog 5-26-06

FRIDAY, MAY 26, 2006 03:50 PM, CDT
Well, I am happy to share the wonderful news that we have been given a gift from Alex and God.

We are expecting a new little miracle February 3, 2007

Moved from Alex's blog 5-23-06

TUESDAY, MAY 23, 2006 04:18 PM, CDT
Well, I finally did it...........

You may be aware that after the birth of a baby there is a '6 week' post partum appointment that every new mother must have, and every new mother thoroughly dreads. In my case, dreads enough to put it off for months.

My original appointment was to be March 14th, I decided not to go that day because Alex was really unstable and I couldn't bring myself to be 2 hours away from him. After he died I just didn't want to do it, it was another one of those things where I was suppose to be bringing him with me and showing him off to all the midwives and nurses, and I couldn't.

Well, my reproductive health at stake, I did bite the bullet and go. I should really have called first to make sure the staff was aware that Alex had passed, but I didn't. I kind of figured that they would already know.

So the nurse takes me back and is doing the bp and all that and she askes 'what is your babies name?' And I swallow hard and say 'he's deceased'. She of course said she was sorry a few times and finished up her part and left to get the midwife.

The midwife comes in and starts crying, which of course makes ME start crying, it's just a chain reaction every time. I'm ok until people cry. I jokingly yelled at her for making me cry and she said 'i know, but we feel like these are OUR babies too'. I can't explain it, but that made me really happy to hear.

All in all I was there for over an hour. We talked a lot about Alex's condition and what happened and our plans for having more children. She went over with me how things will be a little different my next pregnancy because I will be involved with a perinatologist in Marshfield for level 2 ultrasounds and fetal echo's. (A perinatologist is a high risk obstetrician, although I won't be 'high risk' unless they in fact find something wrong with the baby) The only thing that remotely makes me high risk is that I had a premature baby, and honestly that was probably due to him starting to struggle in the womb and initiating labor because it was time to be born.

I was pretty happy that I will still be able to have the pregnancy followed by the midwives rather than seeing an OB (again, unless there's something wrong) because I really love them and the way they do things.

Anyway, everything looks fine in that respect and we were officially given the green light. It was really nice, after the crying to be able to talk about Alex, and someone really wants to listen.

One more point to add, to anyone who might still be harboring doubt about my mental health. We talked about depression, about things that can help etc and she agreed with me that antidepressants probably aren't the answer as long as I can still be productive and live life. At the end of the visit she said that I surely don't seem 'depressed', sad yes. But not depressed.
So I am taking care of myself, and I do have the doors open for help if it's needed.

Living without Alex 5-22-06

MONDAY, MAY 22, 2006 11:20 PM, CDT
I've been a little off the past couple of days. I think I know why, but it's the sort of thing that you don't really share with mixed company;) I've just been a bit weepy and cranky. I KNOW I'm overworking myself but hey, someone has to do it.

On Thursday I'm planning another trip to the U of MN to deliver some bears and see some of my favorite babies (and big boy Caleb too!) . Craig had planned to go but now he changed his mind. He may never be ready but that's ok too.

Not much to write about tonight.

Living without Alexander 5-21-06

SUNDAY, MAY 21, 2006 03:32 PM, CDT
I would like to start off by thanking everyone who has shown us that there are good people in the world by thier kind words and generosity contributing to the Bubba's Bears 4 CHD project. I never in a million years expected the kind of response we have gotten.

I look back and think of all the events in our lives that have led me to this point where I am now. All of the times things just didn't work out the way we planned were just preparing us for the road that God meant for us to travel.

It's funny because a couple of years ago I heard in a country song the line 'if you want to hear god laugh, tell him your plans' and I thought that was sooo true. I never realized until now just how true it actually is.

We spend so much of our time trying to plan and control things and some of us are hard to teach I suppose. Life is so much less stressfull when you just let Jesus take the wheel and buckle up and enjoy the ride.

The elevator incident

SATURDAY, MAY 20, 2006 05:35 PM, CDT
So, I said i'd be sharing stories of our adventure and here's one that I am remembering today.

The Elevator incident.

When we first got to the U of MN we noticed that the elevators tended to be a little quirky. Sometimes they wouldn't recognize that the door was shut and you'd have to jump to get it to shut enough and go (yeah, and what'd they do with that 4 million donation from the Vikings?) And Craig and I joked that one day, one of us was going to get stuck in one. My biggest fear.

Fast forward about 4 weeks. Craig was at home working for the weekend. Tyler's mom and I decided to go up to the 8th floor (yes, that hospital is backwards, the cafeteria is on the top instead of the basement) and have some dinner. We have our 'is this really meat?' cheeseburgers and headed back down to the 5th floor.

The elevator stopped on the 6th floor to allow more passengers on. An elderly woman, her daughter who had previousely had a stroke and was in a wheelchair, and 2 other seemingly fairly healthy daughters. Along with another woman who was traveling alone. While they were getting on the door was goofy and was trying to shut on them. Wierd

So they get in, the door is finally allowed to close and..........nothing happens. All the buttons go dim, and instead of the little LED thing saying what floor we were on it instead said ---.

We all sat there for a minute just waiting and processing what was happening. After pushing all of the buttons and nothing happening to our dear dead elevator we called for help.

The nice security guard comes and from outside the door we hear him say in very broken english something about resetting the system. A few minutes later we feel ourselves move, we thought we were going up (except for the lady in the corner who insisted we were falling to our death), but the doors didn't open.

The broken english security man said he was going to call maintenence. He told us to back up as he was going to try to shove something in the door to 'get us some air' (as if elevators are air tight or something). Then inquired as to if we would like him to try to get us some magazines. About this point is where I succumbed to the unrestrainable urge to laugh hysterically and yelled that the magazines wouldn't be necessary, but a margarita would be quite nice.

A few minutes later the maintenence gentleman comes and tells us he is going to reset the system (didn't we already try that?) Nothing happens.

By this time we had been in our close quarters for approximately 30 minutes. They informed us that thier meneuvers hadn't worked (oh, really?) and they were calling the elevator company. A few minutes latery they informed us that they man from the elevator company would be there in 20 minutes, as he was coming from across town.

I offered my phone to the other unfortunate souls in the elevator so they could call anyone they needed to call. (my phone worked so nicely in MPLS, sigh) and when they were finished I called Craig at work.

Me: You'll never guess where I am
Craig: Jail? (WHAT?!?!)
ME: errrr. no. stuck in the elevator at the hospital
Craig: LMAO

Well, not exactly the response I was after. So I call Alex's nurse and tell her where I am, she too found it rather amusing but was kind enough to inquire as to whether or not I was ok.

I'm still trying to repress my laughter, thinking 'yep, THIS is my life!' When the elderly woman sits down on the floor, begins hyperventilating and promptly insists that we were all going to die, she had it all figured out. We were going to crash to our deaths'

The rest of us are trying to calm her down, lest the poor soul go into cardiac arrest on us. She did regain her composure after a few minutes and everyone in the elevator breathed a sigh of relief that we were not, in fact, going to have to preform life saving measures in the elevator.

A bit later we heard someone from outside tell us to stand back. It was like something in a movie and I pictured they were going to try to blow the door up with dynamite or something, they were quite dramatic.

Then this big buy prys the doors open in some heroic effort akin to a superman move. We all stepped out and strange lady in the corner proceeded to hug everyone, apparently going through such a 'traumatic' experience showed her the love.

Someone from the hospital took our names and addresses. I guess to prepare thier legal defense if any of us decided we were going to sue for pain and suffering or something and gave us all $4.50 meal vouchers for the cafeteria. Apparently we HAD actually gone up when we thought, because we were now back on the 8th floor.

A few of the folks then refused to enter another elevator and took the stairs down. Myself, thinking that 8 floors down was a bit ambitious (was going down to smoke) decided to get in another elevator. The nice security fellow demanded he ride with me, apparently he was afraid I'd break another elevator.

Living without Alex 5-20-06

SATURDAY, MAY 20, 2006 03:29 PM, CDT
After some thinking about the entry on Thursday (2 before this) I have come to the conclusion that this journal DOES tend to be a bit misleading. I mainly post entries here when I'm struggling, so that's what people see.......

Rest assured folks. I'm as sane as I always was (which may or may not be a good thing).

Last night I had a baby dream. Not sure if the baby was Alex, but it felt like it was. A healthy baby boy and I was just doing all the things you'd do with a healthy baby boy. Interestingly enough, I knew it was a dream and didn't wake up upset.

I don't have much to say today. It's a gloomy day and I have a pile of laundry waiting for me. A great day to preform some bear surgery and get some things done around the house. Which you can tell from this entry, I'm not doing.

Living without Alex 5-19-06

FRIDAY, MAY 19, 2006 01:02 PM, CDT
For those of you who've seen me make mention of Tyler, please pray with everything you've got.

A little background. Tyler was born January 17th with the same diagnosis Alex had. Alex and Tyler were roomates for over a month and we got to know his family well.

Tyler has been struggling lately. He has from what i'm told a blood clot in his heart and there was some concern he was becoming septic a few days ago.

At 1:30 this morning I received a phone call from his mother that his hemoglobin had dropped, she was on her way to the hospital and all she knew is they were doing a scan to see where he was bleeding from (if you remember from Alex, when your hem drops, it's bleeding somewhere).

Then at 3:30 she called me again. Tyler had taken another turn for the worse and was very dusky (hospital lingo for turning blue), they had gone up on his vent settings but it wasn't helping and at that time they were bagging him and his mother heard them say he was 'hard to bag'. I asked her to ask the doctors if she should have someone come, and the doctors told her to give them 30 minutes and they would come talk to her. I haven't heard anything since.

So I ask for your prayers again, your prayers were amazing in helping Alex to overcome so much, they are very powerful. I'd also like to ask you to pray for our other former roomate Luke, He's having some issues he's trying to overcome as well.
___________________________________________
Update: I got ahold of Tyler's mom. He pulled through but is still less than stable, the docs really aren't sure what's going on.....

Living without Alex 5-18-06

THURSDAY, MAY 18, 2006 10:59 PM, CDT
hmmm. After reading the latest entry in our guestbook I am left pondering. Are my posts in this journal painting an accurate picture? Or am I just not seeing the accurate picture myself?

I'm not sure if that makes any sense or not. What I mean is, do these entries make me sound more depressed and grief stricken than I feel like I am, or am I really THAT depressed and grief stricken and I am the only one who can't see it?

You see, I actually think I'm doing fairly well. The bear project, the warm spring weather, and doing things outside with the kids have been keeping me busy, and happy lately. Sometimes I feel guilty almost, like I shouldn't be as 'settled' as I am with all of this. Am I just lost? Am I really battling demons so deep that everyone can see it but me? I'm not sure.

To the person who posted the last entry, thank you for your concern. I could tell it wasn't accusatory, but rather genuine and I thank you for that. The kids are doing well, I am very proud of them.

As far as antidepressants, I am not one of those people that thinks badly of them. There was a time when I needed them to get things under control and If that time comes again, I will. I do remember though that although they helped me to deal with things better, they also made it difficult for me to express my emotions,, and I really think that is important as of now. I'm told there are phases of grief, and a book I read said that if you dont' allow yourself to go through them, they will come back to haunt you. So I think it's important that I grieve properly, which, at least with my history I don't think is possible on medication.

Counseling may be an option, but I'm not entirely certain at this point anyway that it's needed. I fear it will just keep me in those depressing moments to talk them to death if you know what I mean. Alex is gone, there isnt' anything I can do to bring him back and I'm trying to pick myself up and carry on, and up until right now I had been sure I was doing a decent job of it, but maybe I'm deceiving myself. hmmmmm

I will have to spend some time thinking about this.

Living without Alex 5-17-06

WEDNESDAY, MAY 17, 2006 10:20 PM, CDT
Please pray for Alex's old roomate and 'wonder twin' Tyler, he's a 'very sick little boy' as per his doctors at the U. It's never good when they say those words.

Kat

Living without Alex 5-15-06

MONDAY, MAY 15, 2006 12:31 PM, CDT
Why is caringbridge eating my entries? I'm not all that happy with it I'll have you know. From now on I'm going to have to start copying what I wrote before I click save just in case.

Anyway, so onto what I just wrote........ deja vu going on or something.

I think Forrest Gump had it all wrong with his Life is like a Box of chocolates thing. Life is actually very little like a box of chocolates. A box of chocolates comes with that nifty little map in the top of the box to tell you precisely where your beloved caramel chocolates are located. And even if you somehow, by chance LOSE that little map, you can be fairly certain that you are still going to get....... chocolate, yes?

I've been thinking about this, as if I have nothing better to do (and yes i'm certain I have certifiably lost my sanity) and trying to think of a clever metaphor for what life IS actually like. All i've been able to come up with is a pile of &*#$ and well, that's not very clever or nice....... although maybe fairly close to being accurate.

So anyway, that's my wisdom for the day, or lack thereof. And btw, I'd like to thank the FDA, FBI, CIA, NBA, of whoever it is that ensures that when I buy a box of chocolates, I DO know what i'm gonna get.

Living without Alex 5-13-06

SUNDAY, MAY 14, 2006 05:32 PM, CDT
Well, I thought i'd be ok. Really I did. Mothers day is just another day. I dreamt last night that it was the evening of mothers day and I thought 'whew, i got through it!' Only to wake up this morning realizing it had just begun.

I woke up crying, quickly got dressed and went to the cemetary. I sat there for a while, crying and talking to Alex and asking all of the mommies in heaven to take special care of him for me.

This afternoon my brother visited. He had been gone on vacation and it was nice to see him.

I now have a migraine. Strange because I haven't had one since I was pregnant and didn't quite know what it was when the vision changes hit me. So this will be short, the bright light of the computer monitor isn't so pleasant. I just have to get through dinner and then I can rest for a bit. Craig, bless his heart tried to get today off but couldn't.

Living without Alexander 5-13-06

SATURDAY, MAY 13, 2006 10:29 PM, CDT
I sit here tonight worrying, not about my own child but about someone else's. Apparently little Tyler is septic. If you remember, this is what ultimately took Alex's life. No child should have to go through any of this, it's not fair!

I'm feeling especially cranky tonight, since mothers day is less than 90 minutes away. I am a mother, but one of my children can't be with me. I miss him so much.

I read journals here on caringbridge about other kids who are in various phases of struggling with problems much like Alex's. The constant roller coaster of emotions. I am reminded of our stay in the hospital. I remember sitting on that first chair at the end of the hall in the waiting area during Alex's many OR procedures, waiting with baited breath for a glimpse of a doctor I knew was with him to come out, signaling that they were finishing up and I could see him soon. When they did come out I would wander down the hall and turn the corner to see if the door to his room was open. My heart always skipped a few beats as I walked in there because I couldn't be sure if he was stable or if he was having trouble. I remember the internal sigh of releive when I would see his monitor and every number was where it was suppose to be. I became very good at scanning that monitor for those numbers. If they were above 130 for heartrate, above 60 for systolic bp, above 80 for sats, between 36 and 37 for temp, and below 15 for CVP I could rest easy for that moment.

I became fairly good at teaching myself to only live in the moment. It wasn't possible to think ahead longer than that. Things could change in the blink of an eye and you never knew which way they would go.

I also became pretty good at reading people. You see, dont' tell anyone....... but I loved eavesdropping. I listened to everything. Hipaa laws be damned, I am a very curious person. Sometimes I would overhear that a baby was sicker than mine, and although I didn't want any baby to be sick, it put me at ease a little. One time when they were doing an echo on Alex, they were talking about another kiddo and the nurse said to me 'you know your kid isn't the sickest anymore when they are talking about someone else while looking at his heart'. Little things like that would just make your day.

I've read back on entries in this journal and come to the realization that while Alex was in the hospital, there was a lot of things I left out of his journal. Not intentionally but because my time on the computer was limited, and because at that end of the day my mind wanted nothing more than to just shut down from information and emotional overload. The memories are still fresh in my mind, sometimes they come in spurts. But I will put them here when I think of them and you all can once again, for the moment....... live with us in the pediatric intensive care unit.

Living without Alex 5-9-06

TUESDAY, MAY 09, 2006 02:43 PM, CDT
Dreams.

Last night I dreamt I had twin baby boys. I have no idea what was wrong with them except that they were in the hospital and both had trach's. It was one of those riled up worrying dreams, worrying about how I'm going to keep them alive and where the next curveball is coming from. I hate those dreams. I feel that all too familiar knot in my stomach, the knot I had while Alex was in the hospital. It feels like when you suck your belly in and breathe like that all day..... your muscles are sore. It's strange.

Apparently Craig dreamt of Alex last night. I realized that I don't dream of Alex anymore....... not him precisely anyway. I dream of hospitals, illness, fear, but the baby involved is never Alex. What does that mean?
Kind of makes me feel guilty and even sad. Sad because at least if I dreamt about him for that moment I would be in some remote way WITH him.

I do however dream of twins a lot. Maybe it's because I worry so much about Tyler and Luke that in some way I feel like I had more than one sick baby. I don't know.

On another note, I think Austin and Chris might have mono or something. I won't go into it but lets just say that my boys, who NEVER get sick..... are really being kicked in the butt by something these past few days:( I'm watching the situation closely.

Anyway, looks like it's gonna thunderstorm and Jack could use some cuddling I bet.

Living without Alex 5-7-06

SUNDAY, MAY 07, 2006 07:37 PM, CDT
It's been a while hasn't it. I really feel again like I am starting to normalize. For a while I cried all day long, then it was a few times every day, now it's more like a few times a week. I feel guilty for that but I remind myself that Alex really woudln't want us to be sad, but to celebrate his life and celebrate his eternal life. some days it's easier to remember than than others.

We are trying for another baby an that gives me some of the hope back that I felt I had lost. I don't expect it to happen right away and I'm sure that we will have a hard time if months pass without it happening. But it really is all in God's timing. He was patient with us when he so much needed Alex back, we will be patient with him.

I find myself meeting so many people I otherwise wouldn't have. Parents who have lost children, all with thier own special wonderful and sad story to tell. It's like this secret club that no one wants to be in, yet we are and we rely on each other to get through.

Craig and I are planning another trip to Minneapolis, not this coming week but the following. We want to deliver some teddy bears and there's a woman I met on a heart babies board who's son is having another surgery this coming week so we will get to meet him and his mommy.

I use to really long to be there, at the hospital, the RMH. It was like we left so much behind. Now that is starting to fade. I miss everyone, but I don't have this need to be there. In fact I hope that for the rest of my life I never need to be there again.

Living without Alex 4-28-06

FRIDAY, APRIL 28, 2006 07:29 PM, CDT
Today was an especially hard day. 3 months old. You would be laughing, learning to roll over, preffering my face to any other, reaching out to play with your toys..... The visions of this that I get in my head are beautiful and so painful at the same time.

Every day, in everything I do I think of you. When I wake up in the morning I feel like I should be doing something and then it hits me....... I should be getting you out of bed and feeding and changing you, excited to start our day together. I remember when the other kids were little, just waking up every morning and being glad that it was finally morning........ now I wake up every morning and feel sad that I have to live yet another day without you.

Today daddy and I were very sad and we opened your box. The box sits on our headboard and seems to only get opened when we are feeling especially sad and you know it only makes us sadder. Everything that was connected to you is in that box:
your footprints from the hospital,

your booties, both the blue baseball ones that the nurses loved so much because they fit on your swollen little feet so well and the jingly horsey ones that were on your feet the day you left us, that still have blood on them from when nurse Kelsa made them messy a couple of days before.

The invitations to your 'birthday party' we had for you the first day

Your hospital bracelet taped to the disk that has your first echocardiogram images on it.

Your lock of hair, crib card, the pacifier the nice nurse at Marshfield gave you. So many things that in a perfect world would hold some sentimental value, but in our world they are our most valuable posessions. The one thing we don't have is your hat. The hat that your nurse searched high and low for because your sweet head was too tiny for the regular baby hats..... yours had to be special. We never got your hat from the hospital.

We miss you so very much. Daddy said to me today that he was scared to have another child because he was afraid that you would think we were trying to replace you. I told him that we all know, you included that no one in the universe could ever replace you.....

I hope you are having fun in heaven. I take comfort in the fact that you will never have to experience the pain that we feel, your new perfect body will always be young and healthy and you will never feel any pain again, only joy basking in God's light. I can't wait until the day that I can be with you again I dream of it a lot when the nights get quiet and I can't sleep. I envision me going to heaven and seeing you and scooping you up in my arms and holding you tight for an eternity.

Sweet bubba, I hope you know how much we loved you in life and how much we will always love you. I hope that all those long days in that hospital bed you felt that. I hope we made the right decisions for you, we made them out of our love. Until we meet again.........
____________________________________________

I'm not sure if I've shared this poem before or not, but it is one that the 'poetry therapist' (which I thought was kind of a hokey profession and she cried more than I did the poor soul) brought and read to me the day before Alex's surgery and it does a good job at explaining things

But not Today
-Brenda Neal

Sometimes
I can let go of the past,
a past locked behind the doors
of painful memories.
But not today.

Sometimes
I can accept the reality
that is me
and the journey headlong
into the unknown.
But not today.
Today change comes hard.
I wear my feelings on my sleeve,
and nothing seems right.

Sometimes
I feel I can
weather anything
tackle anything
do anything
But not today.

Living without Alex 4-27-06

THURSDAY, APRIL 27, 2006 02:56 PM, CDT
I haven't updated in a bit. I got a phone call from Alex's girlfriend in heaven, Gracie's mom yesterday. It was so nice to talk to her. It's nice sometimes just to be able to talk to people who have been there and ARE there themselves.

I'm still throwing myself into making the bears for kids with CHD. It's a nice way to pass the time and I can't wait until I get enough done to actually send them out. Again, if anyone has any nice stuffed bears laying around, please let me know. You can see some of the ones i've finished at http://profiles.yahoo.com/kat_maid_to_ahcsj not sure how long i'll have the pic on there.

Somethign to share:

Bereaved Parents Wish List

I wish my child hadn't died. I wish I had him back.

I wish you wouldn't be afraid to speak my child's name. My child lived and was very important to me. I need to hear that 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. My child's death 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.

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 my child; my favorite topic of the day.

I know that you think of and pray for me often. I also know that my child's death pains you too. I wish you would let me know these things through a phone call, a card or note, or a real big hug.

I wish you wouldn't expect my grief to be over. These first years 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 hard in my recovery, but I wish you could understand that I will never fully recover. I will always miss my child and I will always grieve that he is dead.

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

I don't want to have a 'Pity party', but I do wish you would let me grieve. I must hurt before I can heal.

I wish you understood how my life has shattered. I know it is miserable for you to be around me when I'm feeling 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 I don't 'feel' okay and that I struggle daily.

I wish you knew that all of the grief reactions I'm having are very 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 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, certainly not my intent. Sometimes the world around me goes too fast and I need to get off. When I walk away, I wish you would let me find a quiet place to spend time alone.

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

I wish very much that you could understand ~ understand my loss and my grief. But, I pray daily that you will never understand.


--Poem from Compassionate Friends

Living without Alex 4-22-06

SATURDAY, APRIL 22, 2006 06:55 PM, CDT
So I was thinking today about the possibility of having another child and I realized, I don't want another child. I want Alex. I love my 5 living children dearly, but no other child in the world is as special as Alex was and even if we have 20, there will always just be this special person who isn't with us. It isn't that i wanted a sick child, that I wanted to have to worry every day of my childs life that it might be his last, but we were so willing to take on whatever God had planned for us with him. I remember after his second surgery one of the cardiologists came to talk to us about the fact that they found the 2 small bleeds in his brain and that there was no way of knowing what this meant for him long term, I remember thinking "so what?! He's ALIVE" and even said so much to her, in a nicer way. She said it was a good thing that we had that outlook on it.

I'm reading a book right now called "Walk on Water". It's about a pediatric cardiac surgery center that specializes in CHD. It's a tough read, simply because so many of the scenarios that play out in the book we either dealt with ourselves, or were played out behind the closed doors of the OR with our son. It's very sad, some of these kids really do have terrible quality of life in the realest sense. I mean I've always said that we aren't capable of judging what someone else's quality of life is, but still.

And it makes me think about Alex.

We knew he would have had continued surgeries on that conduit, the tissue wouldn't have grown with him.

We definitely had another surgery this summer, an even more complex surgery than he went through initially. To further complicate an already complicated surgery, scar tissue building up in the heart area is a surgeons nightmare.

His right ventricle didn't work that great which affected his lungs. Probably would hve been on oxygen at home.

He was in acute renal failure, which may or may not have resolved, possibly would have made him need a kidney transplant, which he honestly might not have even been eligable for with a "bad heart".

He had those brain bleeds so he could have been impaired neurologically, to what degree who knows

He could very well have had significant hearing loss from the rounds of Vancomycin he was on for suspected or proven infections.

He would have needed extensive speech and language therapy because of the long term ventilator use. As well as physical therapy because his hips were stuck in the "frog legs" position and his mucles had atrophied so much from laying there all those weeks.

And that's just getting started. So what would his "quality of life" been? Of course don't think for an instant we wouldn't have gladly accepted him in any way shape or form he came, if we weren't willing to do that we wouldn't have worked so hard to get him the help he needed from the get-go. But if I'm honest with myself........ What kind of a way to live is that? To know that you are always going to be cut open, poked, prodded. To have to hand him off to the OR team time and time again while he cried. To have to watch him try to play with his friends and get winded and have to see him sad that he couldn't do this or that?

Of course from day one I was certain I was going to have that kid who amazed everyone. Who was a medical miracle in every sense of the word. But although Alex was a miracle, instead of doing things quickly and easily he tended to be a rather difficult little stinker.

I don't mean to offend or upset anyone with this. If Alex were still here laying in that room on unit 5C I wouldn't even be thinking this, but I need to come to grips with what his reality would have been, and what our reality would have been so that I can fully let him go, so that I can find some comfort within myself that he really is in a better place. Free of pain, "cant's", what-if's. And someday, I will get my perfect body too and get to spend the rest of my life with him and learn even more from him.