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.

Living without Alex 4-20-06

THURSDAY, APRIL 20, 2006 09:08 PM, CDT
I thought I had done the right thing by going back, but now I am left unsure. These past 2 days have seemed more challenging than the one's before. Is it because going back there really showed me that he's gone? Maybe there was some comfort in pretending he was still there.

I miss him. I barely got to know him but it's unbearable how much I miss him. He would be 3 months old as of next friday and I was brutally reminded of that by a pamphlet I got in the mail today 'your 3 month old'. It left me sobbing on my bed tearing everything out of the box.

It's been said that God only gives us more than we can handle. Did he screw up this time? Maybe God isn't omnipotent like we want to beleive and he made a mistake. Can I really deal with this? Can Craig? Can we ever become real people again or will we live the rest of our lives just this shell of who we were meant to be?

I try not to be angry. I try to just keep it all together and carry on with life like Alex would have wanted me to. He fought every single day for his life and woulnd't want us to just let ours slip away from us. But I don't know if I can. I don't know if I will ever be able to get through a day without my heart hurting so much.

It's just not fair. Babies aren't suppose to die. He was suppose to bury ME in the ground.

I have trouble beleiving sometimes that a good god would let people hurt this way. The way Alex did and the way I am now. Someone said to me that sometimes God chooses to heal, and sometimes he chooses to comfort those of us left behind. We'll I'm telling ya, I'm not feeling any comfort. I feel like God abandoned us just when we were starting to finally get it. It doesn't make any sense! I sat out on the deck the other night crying in the rain, telling God that if he's so almighty, to get his butt down here and tell me why he took my son, at least I deserve that......... Did I get any answers? no and beleive me i've listened. I've listened so intently for any speck of anything that would provide me some peace and it's not coming.

Yes, my faith is waivering. Just when I had really found it. Because God took my child from me and left me alone, in my own misery to deal with it.

People say stupid things, 'oh he's better off in heaven'.... Well if that's the case, why did God send him here at all? To feel pain? Are there no better ways to teach a soul than to destroy it? Maybe he didnt' destroy Alex's, but he did mine. I've always beleived that God molds us, to fight in his army when the time comes....... how can I fight if I don't have anything left to give? Alex may well be 'better off' in heaven, but he would have had a damn good life here too. He will spend eternity in heaven, life is in the blink of an eye....... why not let him live some of it?

The world is just going on around me and I'm struggling to keep up. Am I depressed? another silly question people ask.... I'm depressed, I'm scared, I'm unsure who I even am or what I beleive. The world keeps on turning and mine is just standing still....

Living without Alex 4-19-06

WEDNESDAY, APRIL 19, 2006 12:12 PM, CDT
So I went to the hospital yesterday. When we pulled into the ronald mcdonald house lot I started to panic and shake and couldn't even park. I started to wonder if this was maybe a REALLY bad idea. I had my friend park my truck for me cause I just coulnd't do it and Tyler's mom let us in.

We went to the hospital and our favorite nurse Susan was Tylers nurse that day. I was soooo happy to get to see her. We chatted with some of the staff and I really did good seeing everyone, I didn't lose it or anything. It was strange because for the last month I've felt like we left Alex there, that was his space but walking back in there it wasn't...... it wasn't his space anymore. I didn't have that stress knot in my stomach or anything and didn't even feel the urge to look into his old room.

We spent some time there at the hospital and I was really upset to learn that Gracie had died, she was our roomate and had TOF/PA as well and was back for her second surgery. Her family made some awesome t-shirts and left some for the kids and craig and I, they say Kardiac Kids on them. really nice.

I later learned that of the 6 heart babies that were there, 4 of them died in that same week, Alex was first. Only 2 are left, Tyler and Luke. My heart breaks for thier families, especially Gracie's parents because they were in our room that day, hearing everything that was going on with Alex's death, her dad comforted Craig that day, and then had to repeat it with thier own daughter days later....... they are such wonderful people too:(

Later on we went back to the rmh and I was really surprised to see a family still there that we had gotten to know. I thought they would have gone home already and it was nice to be able to talk with them again and thier son had become good friends with Shaylin and Jacksen and I was able to get a picture of him for them.

I'm really glad I went. And really glad Craig didn't. Not that I don't want him to go but it was my time to go, I needed to and he wasn't ready. When he's ready he will go.

I think it was very healing to me and really put some closure to things. I now feel Alex all around me where I didn't before because I just always felt like he was THERE. Seeing for my own eyes that he isn't is what I needed to do.

I terribly miss everyone there though. I told people that if I lived closer I'd probably just loiter all the time. It was so nice to get to chat with Susan again, makes me miss our days of just spending the whole day together, she really is a wonderful person and I am grateful for her and so many others for doing what they did for us, and for Alex and so many other families.

Living without Alex 4-17-06

MONDAY, APRIL 17, 2006 03:18 PM, CDT
So Easter was hard, harder than I even thought it would be. I didn't even want to do anything and if I didn't have kids I wouldn't have but it's not fair to deny them the simple childhood pleasures we have to go on living.

We went to moms for dinner. We didn't stay long and I feel bad for that but I just wasn't in any mood to celebrate anything. I wanted to go to the cemetary but I didn't, I just couldn't. I did go today though.

All in all, i'm just really glad easter is over. Mothers day will be the next obstacle to get through.

Tomorrow I'm planning to go the Minneapolis. Just me and a friend. I'm not sure if it will be as theraputic as I hope and the closer time gets the more I'm starting to panic.

We got some of Alex's medical record today, it wasn't exactly what I was hoping to get but it was something. I of course don't understand all of it because it's all in 'Dr Speak' but I understand enough. I think reading that kind of stuff takes me back, for the moment to when he was still alive. All those numbers and notes are relating to him so in a way through that, he's still here. Unfortunately I eventually have to stop reading and he's not here.....

I'm really struggling with being able to do everything. It's very hard to try to grieve, and be a mom to 5 other kids at the same time. There are sometimes too many hours in the day and not enough of me to go around. I hope this gets easier someday.

living without Alex 4-15-06

SATURDAY, APRIL 15, 2006 10:56 PM, CDT
A month ago, at this very moment I was kissing my son goodbye for what I thought was the night. I remember I didn't kiss him directly on his head like usual because Jack had a sniffle a few days before and I didn't want to give anything to Alex so I used the foam sanitizer and then kissed my hand and touched his head. I said 'see you tomorrow angel boy' and left. And that was the last time I saw him alive.

This last month has seemed like an eternity. It's hard to beleive that it's only been a month, it seems like so much longer.

Today I brought him his easter presents. A thomas the train toy that I had promised him when he was in the hospital because I knew Jack wouldn't share with him, and a little bunny that said 'my first easter' on it. Oh how I wish he was celebrating easter with us.

Thank you to whoever put the little baby sized easter eggs out there for him, they are adorable!

Living without Alex 4-14-06

FRIDAY, APRIL 14, 2006 09:59 PM, CDT
Well I went today after all, I just couldn't not go when it was my moms birthday. Instead of going to Chuck E Cheese though we went to the Como zoo.

As I was driving along I-94 and our exit came up, I had this insane urge to just keep on going and go to the hospital. I mean such a strong urge that I almost missed my exit completely. But I got it together.

So I take the exit and my cell phone starts ringing. I wasn't going to answer it because I am quite a danger to society if I drive and talk at the same time, but I just answered it anyway. Turns out, it was a mom of Alex's old hospital roomate, the docs use to call our boys the 'wonder twins' because they were born within a week of each other, had the exact same diagnosis, and pretty much followed each other's course of treatment, complications and all.

We chatted for a few minutes about how Tyler was doing, how we are doing and all that.

So now, I have this insane urge to visit. I really really REALLY miss it there. I miss the house, the hospital, the staff, hell even sometimes I miss the nasty cafeteria's 'is this really meat?' burgers. It feels like we just left such a HUGE part of our life at that hospital. We were forever changed inside those walls, like a factory where you go in and they completely remake you, and you go out the door headed for the big new world a different person.

I'm worried though. Will going there, seeing Tyler and Luke and all the nurses and stuff completely undue any healing I've managed to accomplish? Or will it help me to finally put it all behind me once and for all?

That is the question.......

living without Alex 4-13-06

THURSDAY, APRIL 13, 2006 02:12 PM, CDT
I was doing better today, until I got my mail.

Got an envelope from the funeral home. My first thought was that we must have forgotten to pay something, or maybe it was some sort of receipt so I opened it not even thinking twice.

What I found instead, right there sitting in my face was Alex's death certificate. No warning, just boom there it is.

I was shaken, but somewhat ok until I read

Primary cause of death: Metabolic Acidosis hypotension

Other primary: Suspected Sepsis

Other contributing factors: Post RVOT repair of Tetralogy of Fallot/Pulmonary atresia

Now none of this was such a surprise that it should have taken me off guard. But when I read the sepsis part the 'what if demon' totally took over and now I find myself wondering if in some way I made him sick. Now, really this is silly, he had so many sites that were just begging for bacteria to enter, but still I want to blame myself I guess.

The day has gotten better though. I went to the craft store in hopes of finding a nice project to occupy some of my time. I couldn't find anything I wanted to do and then I had a great lightbulb moment. So, i'm making and recycling old teddy bears, they will have a heart patch and a 'scar' on thier chest. I'm going to also write a little kids book entitled 'Alex the bear has s special heart, just like YOU' that fits in a little pouch on the bears back, and I'm going to give them to children's hospitals for 'heart babies' .

So, if any of you have any old clean stuffed bears laying around the house that your kids no longer play with, or if you'd be willing to watch some garage sales for some this summer, please email me.

living without alex 4-12-06

WEDNESDAY, APRIL 12, 2006 04:18 PM, CDT
For some reason today has been a very hard day. I am finding it very difficult to find my 'happy place'. Easter is coming, not only is it the first 'real' holiday we planned to spend with our sweet baby boy, but it is also our first goal 'home date' in the hospital, then when we realized it probably wouldn't happen, we were rooting for Mothers day. So Easter is going to suck this year because of that and to top it off it falls on the 16th and marks the 1 month anniversary of losing Alex. I just don't want to do anything anymore.

People try to get me out of the house. My mom wants us to go to Minneapolis on Friday, which is her birthday to take the kids to Chuck E Cheese and have a nice day out. I don't want to go, we had planned to take the kids to Chuck E Cheese on our way home from the hospital on the wonderful day when Alex would finally be sent home from the hospital and that didn't happen.

People think i need to get out of my house. My house is my safe place. I dont' have to see babies, pregnant women, any of it in my house. I can cry without being gawked at, and i'm not 'the woman who lost her baby'.

I find myself feeling very bitter today. I'm mad at God. I try to tell myself that God took Alex home and ended his suffering, but then on these hard days I think that's a bunch of bull, God preforms miracles every single day and he didn't. Why didn't Alex deserve a miracle? Why are prisons full of people that do awful things and yet for some reason Alex, an innocent child's life was taken from him before he had a chance to live it. It makes me so angry. Instead he felt pain every day of his life, for nothing. To have it end anyway.

I'm sure eventually I'll find my way back to my happy place for a while. But not today.....

God, Take This Child....
By Nancy Scott

Sweet child whom we never really got to know,
It’s hard for us to let you go.
We waited and we wanted you.
We had so many dreams for you.

We think of smiles we'll never see.
We think of events that will never be.
There will be no first steps and no first teeth.
There is only a void and our own grief.

We planned to take you to places far and near.
We yearned to keep you safe and free from fear.
We hoped to show you much of your new world.
We wanted to teach you as your life unfurled.

It’s hard to understand why you, our baby, died.
We feel so numb right now, many tears we’ve cried.
We have so many questions and no answers seem to come.
We tried so hard to save you; nothing could be done.

God, we stand before you broken-hearted
and ask you to heal these lives that must be parted
from this little one we can no longer hold,
who will always be a part of us, even when we're old.)

God, take this child in your loving arms.
No more can he suffer any harm.
Bless him always and bless us too.
Be with us and help us to make it through.

living without Alex

SATURDAY, APRIL 08, 2006 10:02 PM, CDT
I know, i haven't updated in a long time. Just trying to be normal. I don't feel like I have anything positive to say and I don't like to be depressing everyone.

They say this gets easier. I'm not sure who 'they' are, but that it gets easier doesn't help me NOW. I'm dealing with today, today.

I'm frustrated because people don't know how to react to me, and I don't know how to react back. I hate it when people try to avoid the subject because I love to talk about my son and quite honestly, not much else at this point in my life is worth talking about. Don't avoid me because you dont' know what to say. Ask me about him, about his life, even about his death..... but dont' act like he was never here.

I'm still trying to wrap my head around the fact that this is it, Alex is never ever coming back. His little body will be in the ground, in that cemetary forever. I will never again hold him, see him, none of it. How can something so wonderful just be gone just like that? In the blink of an eye it seems?

I'm really trying to be normal. Trying to appreciate what I have. I find myself short tempered with the kids and I hate that. It's not them i'm mad at, i'm not mad at anybody. They are hurting and dealing too and I'm not making it any easier for them and that sucks. This is a huge turning point in thier lives and my response to them can make it or break it, how's that for pressure?

It seems Jack must be reminded daily that Alex isn't coming back. Everytime he sees anything relating to a baby he will say 'that's for baby Alex, baby Alex in the hostible' and I'll say 'no Jack, baby Alex isn't in the hospital, he's in heaven, up above the clouds with Jesus' and he'll say 'baby alex get better and open his eyes' and I have to say 'no jack, baby Alex can't get better, he's gone forever and ever' Every day we have this conversation. I don't want him to forget Alex, but it just hurts me to have to say those words over and over again. Almost like I'm not only telling him, but myself as well. It's really emotionally draining.

I know I should go to counseling, we all should. But I have yet to make the appointment because I'm afraid. I'm afraid because I don't care how many years of schooling you've had, you DON'T understand and I'm afraid that I woudl be completely unreceptive to them because I would always be thinking that. Always be bitter about it.

I got on the scale for the first time the other day and realized that I have lost exactly 23 pounds, I gained exactly 23 lbs during my pregnancy. I had this though that it's like it never happened! Yet it did, and I don't have anything but pictures and memories to prove it.

Here's a poem I like

My parents, they tell a lot of lies
they never did before.
From now until they die,
they'll tell a whole lot more.

Ask my parents how they are
and because they can't explain,
They will tell a little lie
because they can't describe the pain.

Ask my parents how are they,
They'll say, we're alright.
If that's the truth, then I say,
why do they cry each night?

Ask my parents how they be,
they seem to cope so well.
They didn't have a choice you see
nor the strength to yell.

Ask my parents how they are,
We're fine, we're well or we're coping...
For God's sake guys, just tell the truth
just say your heart is broken.

They'll love me all thier life,
I loved them all of mine.
But if you ask them how they are
they'll lie and say they're fine.

I am here in Heaven.
I cannot hug from here.
If they lie to you don't listen,
Hug them and hold them near.

On the day we meet again,
we'll smile and I'll be bold.
I'll say, You're lucky to get in here guys,
with all the lies you told!

Facts about congenital heart defects

SATURDAY, APRIL 01, 2006 06:26 PM, CST
If you are visiting Alex's site because you received a Random act of kindness or a giving box, please sign the guestbook! We like to see how far Alex's love is reaching. While your here, take the time to read Alex's story, the journal, and browse his pictures.

Some people are born with special hearts, the rest of us have to work at it;)

Don't know what I'm talking about?! Read on!

Facts about congenital heart defects:

1. Congenital heart defects are the #1 birth defect in the U.S

2. It is estimated by the American Heart Association that nearly 1.2 million Americans are living today with a congenital heart defect, some of them don't know it until it is to late.

3. An estimated, on average, 1 in every 100 babies are born with a congenital heart defect (In comparison to Down Syndrome, 1 in every 900)

4. In the U.S nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined, yet, funding for pediatric cancer research is 5 times high than for congenital heart defects.

5. Congenital heart defects are the #1 cause of birth defect related infant deaths.

6. Of the children sticken with Congenital heart defects, 1 in 10 have fatal birth defects.

7. Currently, there is no known cause, cure or prevention of congenital heart defects.
8. On average, 40,000 babies are born each year with a congenital heart defect.

9. Currently, there are over 35 known types of CHD.

10. You CAN help to save the Heart of a child! Visit http://www.kidswithheart.org/

Also, when youre done here, grab some tissues and take a look at Alex's montage at http://www.onetruemedia.com/shared?p=42c59bc2e1dbedd5a18bd




A request in honor of Alex...

At the bottom of this post a little message Please copy and paste it into a wordpad or word document, duplicate it to use up the whole page, print off a few copies, cut the messages apart and participate in our effort to make the world a little bit better in honor of Alexander. All you have to do is what most of us should be doing every day, little random acts of kindness. It might be paying for the person's food behind you in the drive through, helping a little old lady carry her groceries, When your at the gas station for a coffee, buy a lottery ticket and hand it to someone in the store, buy a small toy for a child in the store, bake some cookies and bring them to the local city hall, goodwill, or police station....just the things that we all should do but rarely take the time or effort to.

Everytime you do one of these random acts of kindness, please give the person one of these messages. They have Alex's website on them so at the same time as we help others, we can raise awareness of congenital heart disease as well!

Please also forward this to your friends!


Thank you!
Kathleen and Craig and the kids

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