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Sunday, May 11, 2008 5:58 PM CDT

Time flies..............

Here we are on Mother's Day. I have three wonderful children. They drive me nuts at time but I am fortunate to have them because there are many who don't have them anymore.

Jack Corbo
This little guy has touched my heart in ways I can't even explain. I found out about his soon after he was diagnosed and found out he would need a heart transplant. Then he got his transplant on my brother's birthday. The brother I lost who was waiting for kidney. Seemed like my brother, Kevin, was his guardian angel. Things went along for a while and it was discovered last summer, that Jack would need a new heart. He spent all winter in the hospital but the new heart was not meant to be. Now mom and dad and twin brother, Cooper, are left behind to miss him.

www.caringbridge.com/mn/corboboys

Gabrielle Paquette
Gabbie was one of the first kids I knew on caringbridge. She is the daughter of friends of my neighbor. She was diagnosed with neuroblastoma shortly before her 2nd birthday and passed away in May 2002. I cried like a baby when Gabbie died. I believed she would make it and it broke my heart when she didn't. I still visit her site at least weekly and her mother has such faith. Next Saturday (5/17/08), Gabbie will have been in heaven for six years. I can't hardly believe it........

www.caringbridge.com/mn/gabrielles.prayers

Marko Bratulich
Ahhh little baby Marko. Such a small guy born too early. He is the son of at that time my daughter's teacher. Now they are good friends of mine. Marko lived a very short time but was so very, very loved. Now he has two little brother's to watch over. He was such a wanted and loved child. His spirit was strong, his body was not.

www.caringbridge.com/mn/markobratulich

God Bless,
Susan


Friday, January 25, 2008 2:52 PM CST

Wow - it's been a while since I updated. Just very busy with other things.

Knock on wood, Zachary has been doing very well this winter and hasn't had pneumonia! Thank goodness!!

I still struggle with the sadness of not having my mother here - some days are much worse than others but some are really good. I think a death of a person close to you changes you forever and to think you will be the same as you were before is crazy. The way I look at things is completely different and in that way I wouldn't go back. I appreciate people more and try to slow down and enjoy things.

Tomorrow is the anniversary of Marko's death. He would have been three years old now. Please visit his guestbook and leave a message if you can.

www.caringbridge.com/mn/markobratulich

God Bless,
Susan


Monday, September 24, 2007 9:27 AM CDT

Fall is here again even though right now it feels like summer still but I'm sure it will change soon.

Zachary is doing well - had a check-up recently and adjusted his meds and added a new one. He has an active cough and they put him on Zyrtec for that. He will need a thorough allergy testing eventually to see what the cause of it is. He also needs a flu shot as soon as they are available. They definitely help him each year to escape a lot of illness during the winter.

He's just a busy guy getting ready to start hockey. Yes, I said hockey! He will be a mini-mite and can't wait! I will post pics as soon as he starts!

God Bless!!


Monday, July 23, 2007 3:16 PM CDT

Zachary is doing pretty good. He's not happy right now though because he is forced to stay in the house. It's so hot and humid and the air quality is questionable so rather than have issues, he has stay in. It looks like the rest of this week will be that way too.

He has his next check-up right before school starts and they will begin doing breathing tests with him. He hasn't had to do that before so I guess that's part of being a big boy.

Please pray for the Corbo family. Jack is three and had a heart transplant when he was 4 months old. It has now been determined that he will need another. It's heartbreaking as he and his family have been through so much! I hope and pray he gets what he needs and can get on with the rest of his life with a new heart.

Jacks's Website

Jacks's WCCO Story


Thursday, May 17, 2007 7:21 PM CDT

It's been a busy time in the Bernhardt household with school functions, field trips, soccer, T-ball, dance recital, birthdays................no wonder I am tired all the time!!

Zachary is doing pretty good - he's having a few allergy issues at the moment but otherwise doing well which I am very happy and thankful for.

I am missing my mom more than ever right now. She always visited this time of year to go on field trips and be at the dance recital and of course celebrate Zachary's birthday. Today I went on a trip to the Como Zoo with the kindergarten classes. I haven't been since 2005 and when I went, Mom was with us. It was a lot of fun but hard to walk around and remember all of those things. I have learned one thing, no one can tell me how to grieve or how long to. I believe I will grieve the loss of my mother my whole life. I feel alone a lot but I guess I am getting more used to it. Lucky for me I have Zachary, Sarah and Hannah to brighten my days. Doug is a big help when he can but he doesn't understand what I am going through so it's difficult for him to give me what I need.

Anyway - here is a picture of Zachary at the park in Princeton last night. My girl scout troops met and had a pizza party and planted flowers in our garden there. It was fun. His blue eyes get me every time.....


Friday, February 2, 2007 1:39 PM CST

Zachary is cruising right along as usual. I haven't updated a lot, not a lot to talk about. I have had little time to do it and to be honest, I don't want to get anyone down. The sadness of my mother's death overwhelms me all the time. I hope in time, it will ease.

Zachary has escaped illness since December when he had pneumonia. (KNOCK ON WOOD!) He's happy going to school twice a week and is really working hard on potty training.

It's cold here and we are getting close to the end of the regular hockey season. Hannah's team is still doing well - 26-1-1 and rated #2 in the state.

Please say a prayer for this family as Jennifer is in the last stages of cancer. She will likely pass soon and will leave behind a husband and two young daughters. She is only 27.

http://jenniferireland.blogs.com/


God Bless,
Susan


Thursday, December 14, 2006 9:22 AM CST

It's been a while since I've had a journal entry but I've been busy.

My mom passed away since the last time I journaled. It was very sudden and very difficult. I am so sad sometimes because I know Zachary probably won't have a lot of memories of her at all. He talked on the phone with her almost daily and we have tons of pictures but I just worry he won't remember her. I hope I am wrong.

It's been hard on the whole family. I was very sad when my father passed away four years ago but this has been so different. Maybe it's because he had been sick for about three years and I knew that would be the outcome sooner or later because his only option was a heart transplant and he wasn't willing to go through that at his age. I know loss is never easy but this has been especially hard for me.

Zachary's cold had turned into pneumonia. He's been feeling really horrible. This is round number two with this in 2006. I hope 2007 keeps him free of being so sick. I think he's getting a bit better as the week goes along.

Please pray for the Bergstrom family. Baby Ellis was born with a heart defect and he fought hard for two years and had a heart transplant earlier this year but his little body couldn't take anymore and he earned his angel wings. I feel so horrible for his family.

http://www.caringbridge.com/mn/ellis

God Bless you during this holiday season!
Susan


Tuesday, October 31, 2006 9:31 AM CST

Happy Halloween!

I hope everyone has fun with this "kid" holiday. I try to ignore the "evil" that goes with it and just watch the kids have fun for once. Life is so hard at times, it's nice to sit back and watch them have their fun in their innocence.

Zachary suffered his 2nd concussion in his three short years of life. He climbed in a stroller at Mall of American and it fell over backwards. Huge egg on his head. We had to take an ambulance to Children's Hospital and have a CT scan. It's still pretty big and bruised but I would say he is back to himself for sure.

My mom is very ill and in the hospital in Missouri. It's very difficult to be so far away.

Have fun today and hug your babes!


Thursday, October 12, 2006 8:36 AM CDT

After a very long week - here I am.

It's been hard to be upbeat about things. The deaths in Princeton of three teenagers over the past 7-8 months has been very difficult for all. More so obviously for the families and the young friends left behind. As I was busy on Tuesday morning making yet another funeral dish, I kept thinking why? Of course everyone thinks that, I have a tendency to take death harder than most. I feel fortunate, my kids are still very young and somewhat untouched by all of this except for Hannah who is almost 11. She is very aware of what has happened, she has had friends who have older siblings who were friends with those that are now gone. Jon, the one who died last week, was a hockey player and that seems to have affected the whole community whether you knew him very well or not. I knew who he was - always had this mischievious look about him. He was a jokester and had tons of friends. That was obvious from the turnout of his funeral. They were expecting up to 800 people. I know a lot of people that are deeply affected by this and it's so very, very sad. You expect that through these kids school years that they might lose a classmate or two. However to lose three in such a short period of time. Princeton has lost a kid every year for the past seven. Might not seem like that much in some communities but even though it is growing, this community is still small town. Just a lot of sadness....

Zachary is doing okay - got a bad cough right now but that's the way it is. The weather going back and forth can be a little hard on him but he just keeps going.

There are new pics on the picture page - take a look if you have time.

Susan


Saturday, October 7, 2006 9:39 AM CDT

Tragedy has struck once again in our community of Princeton. In the past eight months, we have lost three high school kids to traffic accidents. I often wonder what more can these poor kids take? You have to imagine the pain, confusion and sadness they feel is overwhelming. As a teenager believing nothing can touch you, I would imagine that these kids know all too well that it can. I am hopeful that our community provides the support that is needed so they can get what they need to get through this. Jon had already gone through so much this year as had his family when he broke his back during a hockey game in January. There is a link to his caringbridge website below from that incident.

That said, the horrible ache these families who have lost their child has to be the worse thing possible. I know this most recent loss has to just open up those wounds for the families that lost their children last spring and make them raw all over again.

My kids are all doing fine. All of my prayers are for those who are going through this tragic loss. It's painful to be in Princeton and see these kids and remember Jon as he was.

Please join me in praying for the families and my community.

Jon Schnackenberg's caringbridge site


Jon wrote this poem...

Pen marks the page
A footprint in the snow
Tears flow strongly
In the hope that you'll know;

I never meant to hurt you
My emotions were too strong
This letter that i write you
Will perhaps explain it all;

Every person touches another
In ways not known to all
You all touched my heart
and i reached right back

but now ive got to go

I loved too much
worried too much
My fears i made come true

You see
when we think too hard
Of all the bad
that evil comes too true

so, everyone,
please understand
Why i'm leaving you.



You thought i was happy,
But that was not true,
Now something has gone wrong,
And you all dont know what to do,
You go and search,
So you can get a way from the pain,
You wished this all was a dream,
You wish everything went back to the same,
Now tears roll down,
and drop off your chin,
You cant believe whats going on,
I cant believe you didnt know,
There was nothing wrong
But now there is nothing you can do,
Or that could can redo for what has happend,


Thursday, October 5, 2006 4:59 PM CDT

Time flies when you have kids in school. A lot of the time I can't remember where the week went! I can only imagine how it will get to be as they get a big bigger.

Zachary is doing well except he is a bit wheezy and coughing. I am looking forward to his check-up at Children's next week and I hope to get him a flu shot then. There is so many viruses going around at school right now. In fact, I have pneumonia but getting much better. It seems like every other day a new person in the house is coughing!

We have a couple of kids in our area that have caringbridge websites. If you have a minute, stop by and leave them some good thoughts!

Colton has just come home from Gillette's in St. Paul and is back at school.
Colton Benner

Cole had brain surgery a week ago today and fortunately his tumor was benign! He is getting better and better every day!
Cole Heinemann


Now for some very, very sad news....please pray for the family of little Jake Owen. He has been battling liver cancer for a long while and earned his angel wings today. It's just heartbreaking for me as I have followed him for such a long, long time.
Jake Owen

Hug your kids whenever you have a chance, tell them you love them, you just never ever know.

God Bless,
Susan


Monday, September 25, 2006 8:48 AM CDT

Here we go......cold number one of the season. I knew it wouldn't be long before it would hit us with school starting. Zachary seems to be doing pretty good with it, he is waking up quite a bit though and lots of coughing. Regular maintenance meds are the key. I think I feel worse than he does, this cold has hit me like a brick! OH well!

We don't have anything going on until this afternoon so I am happy to stay at home. His sister, Sarah, starts Learn to Skate and oldest sister, Hannah, has hockey clinics. I can't believe she is starting her 6th year in hockey. Never, ever thought she would stick with it. I'm glad though - she is a great player and it's a great lifelong sport here in Minnesota. Zachary isn't totally potty-trained so he can't start hockey until he is. He wants to but not enough because he is still in pull-ups. It's getting better though.

Say prayers for all who have been lost this week and one that has hit me particularly hard, Christi Thomas. She fought so bravely for so long. I can't imagine her parents pain. They are so eloquent in their journal entries, it amazes me. I'm not sure I could hold it together like that.

http://www.christithomas.blogspot.com/

Hugs,
Susan


Wednesday, September 20, 2006 6:30AM

Wow - the first two weeks of school have gone by fast. Zachary is enjoying preschool - has a hard time separating at first but he's good once he gets past that part. He couldn't understand on the first day why he couldn't get on the bus with the girls. It was funny.

He's doing pretty well with his asthma so far. He does have his moments. Last week, he didn't get his evening nebulizer treatment because he was so sound asleep. I paid for it at 3am. He woke up crying and coughing and vomited all over the side of my bed because he couldn't get those airways cleared out. Poor guy! He was so upset but I threw him in the bathtub and he and I went downstairs to sleep after he, the floor and my bed were all cleaned up. Luckily he did it on Doug's side of the bed and Doug was out of town. So instead of trying to find some sheets, we just went downstairs and slept together on the couch. Not the most comfortable but it worked. Lesson learned? Always wake him for his neb no matter how asleep he is.

A few children have passed onto Heaven in the past few weeks which has been hard. It's so sad and so sad for those families. One good thing has happened, Bart Corbin plead guilty in Georgia to the murder of his wife and his girlfriend 16 years ago. He finally did the right thing (pretty much forced to) and told the truth and spared the family the agony of a trial. God Bless Jenn and Dolly.

http://www.caringbridge.com/ga/jennifercorbin

I am trying to not sound too callous but it just proves you never totally know someone. Most people in this world are kind and good and then you have the others that can appear that way as long as things go their way. Jenn's sister and family have gone through hell and still are. Two little boys will have to grow up without their mom and dad. They are in wonderful hands with Aunt Heather and Uncle Doug but their murderous father left their mother for them to find. How does he think that will affect the son that found her? Obviously that wasn't in his mind or he just didn't care. They will grow up surrounded by love but nothing replaces Mom. I am infinitely sad for this family as I have followed this and read Heather's entries and belong to groups she is a member of. We need to send prayers their way as I know this is a relief but still very, very sad time for them.

Hugs,
Susan


Monday, August 21, 2006 6:15 AM CDT

Please take time today and pray for baby Max Jordan. This little guy is quite the fighter. He was diagnosed with ALL or Acute Lymphocytic Leukemia when he was about a month old. He went through treatment but has relapsed. He is having a lot of other issues going on at the moment but keeps on fighting.

Stop by his website and give his family an uplifting message if you have time:

http://www.caringbridge.com/visit/maxjordan

Baby Max lost his battle today and has flown to heaven. The sadness overwhelms me.



The kids spent last week with Grandma Bernhardt. Had a blast. I was nervous about Zachary because he never has been away from both Doug and I. He was fine. The one who got homesick was his big sister, Hannah (age 10). She's a homebody though. I'm sure he had more than enough to keep him busy so he didn't even seem to care.

His cough seems a little worse to me though. I thought maybe it was allergies but I am going to step-up his nebs a bit and see if that helps. He just keeps on going though.

Hug your kids and tell them you love them every chance you get!

Susan


Friday, August 11, 2006 8:17 AM CDT

My heart is heavy today. I worry about Zachary a lot, a little more than my daughters because they are "healthy." There are so many little children in this world dealing with cancer. Some days it is very overwhelming when you look at the pictures of their little faces and know what they are going through when they should be out playing and enjoying the sunshine.

This week was the 2nd anniversary of the passing of little Hanna. How hard that must be as a parent to go through these milestones??!! We have terrorists running around plotting to kill whoever they can and these poor people are trying to live their lives without their babies and have to live with the memories of what their child suffered?! Hanna's parents are planning to adopt which will help as they will have something to focus on but can never take the place of what they lost. Please visit Hanna's site if you can and offer some good thoughts.

http://www.caringbridge.com/ms/hanna

Little Max Jordan has relapsed with Acute Lymphocytic Leukemia. He isn't even 14 months old and has been dealing with this beast since he was about a month old. Our sweetest and most innocent can't even escape it. I am hoping and praying sweet little Max will get back into remission, get a transplant and go on to live a long happy life. I know the odds are against that but I hope and pray anyway.

http://www3.caringbridge.org/cb/inputSiteName.do?method=search&siteName=maxjordan

Now for my guy, his breathing has been a bit easier in the past few days with the lessened humidity. That humid air causes him lots of problems. He has thrown up a couple of times in the morning in the past few days so I am thinking I need to up his nebs again because he appears to be having trouble clearing out his airways in the morning. He is persistent though - he doesn't let that stop him from going and going and going............

I am so very thankful he has only had one hospitalization this year. I am thankful every day that he is such a happy kid. I am also so very thankful that the worst thing I have had to deal with is this and not cancer.

Take time to smell the roses!

Susan


Monday, August 7, 2006 8:36 AM CDT

Thank goodness the humidity has died down some. It makes it much easier on Zachary and everyone else in our household. He lives to be outside playing and the heat and humidity has made that impossible some days the past few weeks.

He still seems to have this really bad summer cold where he coughs something terrible. I have given him his nebs which seems to clear him out some but I imagine it could also be some kind of allergy. He has underlying allergies but because of his young age we haven't had him fully tested.

Only a few more weeks until school starts. I can hardly believe it. I'm getting ready to celebrate another birthday. It's difficult to get excited about that at all. The kids don't understand why - they think birthdays are great. I told my oldest, Hannah, when you get older, you just don't care as much. I'm only 37 but that's closer to 40 than I care to ponder about.

Anyway...enjoy your week! Stay safe and hug your loved ones.

Susan


Friday, July 14, 2006 8:50AM

Zachary has been having a terrible time in the past few days with this heat! He wheezes if he is outside much at all. It's very difficult to keep a 3yr old in the house when it is sunny out but I have been doing my best. I am hoping to take him to an indoor swimming pool or something this weekend to get out some of that energy of his! He seems to have a cold and I have been giving him his nebulizer treatments but he still has his "active" cough. Which means he coughs a lot because he is quite the active 3yr old. I'm not sure what will be done to ever get this under control because we have done a lot of different medication changes for him and nothing has helped. I worry eventually it will cause him problems but I guess that's because I am mom. I really feel lucky he has only had one hospitalization this year. His first year of life was so hard and he was so sick most of it. I'm grateful for his wonderful doctor and he is doing so well.

At the bottom of the page is a link to an article about pectus excavatum. If you look on our photo page, you will see that Zachary has a quite severe case of this. We have yet to see a surgeon about it because he is so little but it will have to be done eventually.

Keep cool!

Susan


Friday, June 16, 2006 8:35 PM CDT

It's storming outside and our temperature as dropped about 20 degrees in the past half hour! It was so hot and humid today. I kept Zachary in because he just wheezes a lot when he has to deal with that.

He's been doing pretty well. He has a cough when he is active. The doctor has tried different meds on him but nothing seems to get rid of it. Just a side effect of what he has to live with I guess. It doesn't slow him down too much. He's one active guy.

At this point, I feel fortunate that is the problem I am dealing with. The Duckworth's from Florida just lost Jacob. He has had a rare cancer and lived so much longer than they ever thought he would. He is one of a set of triplets. He comes from such a wonderful family, the tears just rolled down my face when I found out he passed. I know in every sense he is better off now, not suffering, with God but I just can never make sense of why a child leaves their parent? There are so many kids every day dying of cancer, why can't we stop it? As much as I stand behind my President and our troops, why don't we pour the money we are putting overseas into cancer research or premature birth or why children are born with heart defects? So many people are so giving and willing to donate their organs for those in need, why doesn't everyone? I lived through losing a brother to kidney failure and a father to heart failure. Transplants could have saved them both. Could still save so many. You shouldn't take it with (your organs that is) - donate them and save lives! I know what it's like to be on the side of the family waiting. It is my hope that everyone will donate and give those children and mothers and fathers, brothers and sisters, aunts and uncles, the chance to live their lives.

Okay, I'm off my soapbox. Just feeling very sad today and missing those that have left before me.

Hugs,
Susan


Friday, June 2, 2006 8:44 AM CDT

School's out for summer!!!!!!!!!!

Is that a good thing or not? So far so good but with the three kids you never know.

Zachary has a terrible cough right now that just doesn't go away no matter what. His meds have been switched and switched but we can't get that under control. It's tough because he is such an active little guy but he keeps plowing on. I would say that age 3 is the most difficult yet so far anyway. He's a very persistent little guy.

Zachary has a new nickname, "Riverdance." Why, you ask?? Let's see.......he got a hold of a bottle of water, got it open and poured it on the window seat which has a beautiful wood on it. He then proceeded to dance and stomp in it. Funny, huh?? It is now but when I heard the stomping of the feet and splatting of the water, Mommy was not laughing. He figured out that wasn't such a good idea pretty quickly. He keeps us on our toes for sure!

Sarah is one week post-op after getting her tonsils and adnoids removed. I was very hesitant about her surgery however now I can say it's been one of the best things we have done. Her sleep apnea appears to be gone and she sleeps so peacefully. Before she would toss and turn and had such dark circles under her eyes. Her throat is still sore and her voice is a little weird but she is doing well otherwise.

Enjoy the beautiful weather, you never know what's going to be like 5 minutes from now.

Susan


Monday, May 29, 2006 11:19 AM CDT

Remembering all the ones who have lost someone today.

Hugs,
Susan


Wednesday, May 17, 2006 6:41 AM CDT

Today I write in memory of Gabbie Paquette who left the earth four painful years ago today. I have included the journal entry from her mother from that day.

Friday, May 17, 2002 at 11:10 PM (CDT)

WHAT SHOULD I WRITE TONIGHT?

I guess I want to share how Gabbie left. At 7:00 a.m. this morning, Gabbie was sitting in her highchair with sunglasses shielding her from the bright morning light. She asked for noodles...but we knew she wouldn't be able to eat. She was so uncomfortable in her highchair that, against her wishes, we put her back in her crib, which we had moved out to the living room. From 8:00 and on, she mostly slept and her breathing was labored. I knew. I just didn't know when. Due to her discomfort, we have not really been able to hold her in our laps. But, after watching her labor in sedation for almost six hours, I decided I wanted to hold her. We thought that with heavy sedation she might be comfortable enough for me to hold her. After less than 10 minutes of holding her in my arms, I noticed a dramatic change in her breathing. I told John to get close. She left.

We have such a long road ahead of us. But we want everyone to know that our marriage is strong, we love Aubrey, and most of all, we still love Jesus. We will still, eventually, make God our number one priority.

WHAT HAPPENED?

We don't know. I read some very good books on healing but always felt that something was missing. I've decided that while healing is offered and sometimes happens, God is simply too sovereign and infinite for our finite minds. Not one person on this earth can write a book that says "if you do this, you will be healed." I did all of it, and I am glad I did because now I know that I did all I could possibly do to try to save Gabbie's life.

John and I have already been reviewing Gabbie's life. Gabbie had her happy moments but really was a very solemn and sometimes sad-looking baby. Maybe Gabbie at a very young age realized that she was just a traveler on earth. Maybe she truly was not of this world. Just as He commands.

We will continue to write for a while. We will continue to request prayers. We believe. But we are hurting so much. And if you remember, I've commented on how God has been very silent. We need to really "feel" His presence. It has to be more than "knowing" that He is present.

Love,
Monica, John, Aubrey & Gabbie


I remember spending that whole day praying for Gabbie and feeling heartbroken and sobbing when I found out she was gone. What I felt is nothing compared to her family's pain but she definitely touched my life in a way I cannot explain.

Today - send extra special prayers to the Paquettes. Every day is hard but this one is especially.

Hugs,
Susan


Saturday, May 6, 2006 12:35 PM CDT

Happy 3rd Birthday, my sweet son! I can't believe it's been three years. You are a joy, a sense of pride and my special little guy.

Mommy loves you so much!!



Sunday, May 7, 2006 2:35PM CDT

Happy Birthday in heaven to Zachary Buckentine. He would have been five today. Instead he fought bravely but could not overcome the cancerous tumor on his brain. I am lucky, my little man is here and I can celebrate with him. The Buckentines have to live their earthly lives without their Zachary. Their faith gets them through..............

Stop by their site and give them an inspirational message if you have time.

Hugs,

Susan


Friday, May 5, 2006 9:04 AM CDT

Zachary has been coughing and wheezing for the past couple of days. I don't think he's forgotten about his trauma of the hospital though because he absolutely refuses to sit still for his nebulizer treatments! I'm pretty sure it's just a cold but I will feel a lot more worried from now on everytime he gets sick.

Tomorrow is his birthday - I can't believe he's going to be 3! This time three years ago I had an amnio at 7am and was laying on the couch waiting to hear if I was going to have my c-section tomorrow. About 1pm I found out that we were going to have our little boy on the 6th. It was scary but I was ready for this very difficult pregnancy to be over. From bedrest to high blood pressure to polyhydramnios (too much amniotic fluid), I needed this to be over. The scary feeling each day of not being able to feel my baby kick and having ultrasounds every other day was almost done. The worry was almost over.

As I sit here three years later I still wonder, would he have all the problems he has had if I had been strong enough to wait three more weeks for him to be born? The doctors say no, but the guilt mother's have is enormous and overwhelming at times and I'm sure I will always wonder.

Take care,
Susan


Friday, April 28, 2006 6:46 AM CDT

It's been a while since I did an update but this house has just been crazy!

Zachary recovered from his pneumonia. He's back to his old self - busy, climbing, teasing sisters, messing Zachary!

I would say after that ordeal, he is difficult to get medicine into. I think with time, he will begin to get easier but right now, it's very, very difficult.

His big sister Sarah (age 5) is going to have her tonsils and adnoids (sp?) removed at the end of May. She snores so loudly and has some sleep apnea. Hopefully this will help the situation. I hate that she has to go through surgery but the poor thing has dark circles under her eyes and I am concerned this could cause long-term physical issues.

Hug your kids, enjoy the weather!

Susan


Friday, March 24, 2006 9:16 PM CST

Well, we are home from the hospital! Thank goodness.

It all started earlier this week - Zachary just seemed to be getting a really bad cold. Then the wheezing started so we called Dr. McNamara's office, upped his meds and added his oral steriods. Nope, no good, doesn't help. Last night I take him to urgent care under the advice of Dr. McNamara's nurse because she thinks he has a secondary infection.

His oxygen levels were low and after an x-ray, he has pneumonia. Two choices - go to the ER in Princeton to be admitted or go to Children's. We decide on Princeton because it is closer and we have two other kids to get from place to place as well. We get up there about 8pm, they give him some more meds and wait a bit to see if they help. They decided at 10pm to admit him.

I spent the night with him and he slept pretty good except when he had to be woke up for vitals and nebulizer treatments. He also leaked out of his diaper onto the bed so we had to change his clothes and bed at 4am. He was NOT happy about that at all.

We then spent most of the day there and they decided to release him this afternoon. He's had a barky cough like nothing I've ever heard and the steriods must have him feeling pretty silly because he's been running around like a maniac! I finally told Doug to give him a little tylenol to settle him so we did that and now he is getting another neb.

I think he'll be fine but there's nothing quite as scary as to have your child spend the night in the hospital. Especially when you are dealing with oxygen levels as little ones go downhill fast.

Please pray for us for everyone to get better (big sister Hannah has a sinus infection)!

Also. please pray for the Princeton community. In 18 days we lost two high school kids due to tragic car accidents.

http://obit.williamsfuneralhome.com/obit_display.cgi?id=297365&listing=Current

Tate was a 9th grader who unfortunately didn't have his seat belt on. The wake and funeral for this family was a tremendous outpouring of concern from this community. There were over 400 people in attendance.

http://obit.williamsfuneralhome.com/obit_display.cgi?id=292642&listing=Current

JoBeth was a junior who did have her seat belt on however with a driver traveling at high speeds and being reckless caused her to lose her life. Her family misses her so much as does everyone whose life she touched.

If you have time, leave a message of hope for these families.

Take care,
Susan


Monday, March 20, 2006 9:07 AM CST

Zachary is not doing so well today. He has a terrible cold, was up a lot and is wheezing loudly. I gave him a nebulizer treatment at 8am. We will see how he is doing in about an hour because if it's not much better, we will be heading into Children's to the hospital. I hate that idea but I hate how terrible he sounds and he even says he is sick. You know it's bad when a 2 yr old says he is sick.

I got a wonderful email from Steve Nielsen's family. They have lost another member of their family so please stop by and give them some encouragement. Steve was their only son and the best friend of his sister, Laura.

http://www.caringbridge.org/page/stevenielsen/

Please also send prayers to Ashleigh's family today as they go through the last stages of her illness with her. They are about to go through a most terrible loss. I can't imagine their heartache.

http://www.caringbridge.com/mi/ashleigh

God Bless You All Today!

Susan


Tuesday, March 13, 2006 8:58 AM CST

Today is the 19th birthday of Steve Nielsen. At the end of next month, Steve will have been gone from this earth four years. It's hard at times for me to believe it has been that long.

I found Steve through my friends, the Paquettes. Their daughter, Gabbie, had neuroblastoma. She died almost 4 years ago too. Two families forever changed by the children that died way before their time.

Take a minute today and leave a word of encouragement for the Nielsen's. They are hurting today as they have every day and always will because they have lost their precious son.

http://www.caringbridge.org/page/stevenielsen/

Give your kids a hug today and be grateful for their health!

God Bless,
Susan


Tuesday, February 21, 2006 8:26AM

Feelings of Loss

Today, my father would have turned 72 years old. He died almost four years ago after a long illness. He died young but lived a full life and is very missed.

Feelings of Joy

Today, a new baby is going to be welcomed into the world. My good friends, Becky and Steve Bratulich, are having their baby today. After so much heartbreak in the past year since they lost Baby Marko and the difficult pregnancy they have gone through, they will feel much joy today as they welcome their new baby. I am so very excited about this baby. I can't wait to meet him or her.

Update on Zachary

Our little guy is doing pretty well. He has made it so far (knock on wood) through this winter with no major illnesses; just a few colds. He still has his nebulizer 1-2 times per day but I think along with that and his flu shot he has had, has kept him out of the hospital so far these past two flu seasons. I'm so very greatful for that. He's so funny and full of energy!! We are truly blessed with him and our girls.


Tuesday, September 13, 2005 7:00 AM

Today I am paying rememberance to a beautiful baby girl who was taken away from her parents way too soon.

Allison "Allie" Scott was born in December 2003. The first child for Andrew and Jenny Scott with beautiful blue twinkling eyes. Things were normal for the Scotts in the beginning.

In late April, Allie began spiking fevers. Doctor appointments, tests run and the most horrible diagnosis parents can get, Cancer!

Allie had Acute Myeloid Leukemia or AML. She began a long and hard fight but it was not meant to be in the end and Allie flew to the angels on September 13, 2004.

Allie sparked a nation of people to continue the fight and find a cure for cancer. There is a Light the Night Group called "Friends of Allie." You can find a link to their website at the bottom. We are dedicated in our cause to help these children. Our inspiration is Miss Allie and her wonderful parents!

Her mother has co-founded another organization called "Heros for Children." Their mission in Texas is to help families dealing with children during this crisis. Paying their utilities, getting them laptops for use while they are in the hospital among other great outreach things they do. There is also a link to them at the bottom of the page.

I will never forget sweet Allie. I cried like a baby when I found out she was gone just as I am now thinking of it. No child should have to suffer through this. Their life is about exploring and playing and getting love from their families.

Thank you Allie, Jenny and Andrew for what you have brought to my life. You are an inspiration.


Monday, June 27, 2005 2:35 PM CDT

I hope everyone is having a great summer.

Zachary is doing well without his nebulizer. He does have quite the cough often but seems to get through it okay.

He's just quite the busy and adventerous boy! If he was there, he would try to climb Everest. This kid can climb! He's so funny and really just trying to figure out the world and what he can and can't do. It can be frustrating at times but he's a joy!

I ask you all a favor and spread it on.....Sweet little Hanna died on August 9, 2004 after a long battle with a brain tumor, Anaplastic Astrocytoma. Her mom is having a balloon release on August 9, 2004 at 5pm and is hoping to get people all over to participate. Please take a moment to do this and remember Hanna and all the other special little children that have died of cancer. There are way too many.

Hanna's site is: http://www.caringbridge.com/ms/hanna

After seeing what these parents suffer through, I feel so very, very thankful for what I have. I hope you do too.

God Bless,
Susan




Tuesday, May 17, 2005 8:09 AM CDT

Today's journal is in memory of a sweet little girl who was taken from this world way too soon.

Her name is Gabrielle "Gabbie" Anna Paquette, age 2 1/2 when she died from neuroblastoma. Neuroblastoma is a tumor(s) of the nervous system, found mostly in infants and children.

Gabbie was diagnosed in September 2001 just before her second birthday and she fought it with all her might until May 17, 2002 when she went to be with Jesus.

Before Gabbie became sick, I didn't know her family. Her father has been friends with one of my neighbors for many, many years and that's how I found out that she was so sick. I began to follow her story and she found a special place in my heart. Her story was shared on the news in the Twin Cities the Monday before her death. I prayed and prayed a miracle would happen on the day she died and cried like a baby when I got confirmation she was gone.

I developed a relationship with her mother, Monica, that continues today. The pain her mother feels is lifelong and never goes away. These "anniversaries" make it that much harder.

Before she died, her mother explained to her that she was going to heaven. Gabbie then pointed her finger and asked, "Will you be dere?" The thought of that exchange between a mother and daughter still brings me to tears. As a mother myself, I can't imagine having that conversation with one of my children. Unfortunately it is a horrible reality for many parents.

In the three years since, I have come to know so many families fighting for their children to live. Many have passed and many are still fighting. For those lucky few, the cancer is gone and they are continuing to grow up.

Please take time out of your busy life and support research to find a cure for children's cancer...all cancers.

Also, think of Gabbie's question to her mother...."Will you be dere?"

God Bless,
Susan


Friday, May 6, 2005 12:35 PM CDT

Two years ago today, my son came into this world! What a wonderful moment in my life. As I reflect on that, I am so grateful for so many things.

He is such a happy, energetic, busy boy. He's doing well with this respitory problems with a few bumps here and there but otherwise he's good. He's so loved and was so wanted. I would love to believe that all children are wanted but I know that is not so. All of mine were wanted desperately. I am so grateful for my son.

I am grateful for my husband. For the hard work he does, how he provides for his family, how he lives with my shortcomings and how he loves us with all his heart. He doesn't always say everything right but it doesn't matter. He shows us each and every day how much we mean to him. I am grateful for that.

I am grateful for my wonderful daughters. They bring such joy to my life. They are growing up so quickly and get more beautiful each and every day. They make me laugh and make me feel like I am the most important thing to them.

I am grateful for the rest of my family and friends. I am lucky to have such a wonderful group of people to share my life with.

I am grateful to have the opportunity to know and be able to be there for these mothers I know that have lost a child. The heartache they feel is enormous and lifelong but they forge ahead, strong, determined and courageous. I learn a lot from them. Becky, Monica and Jenny - what a light you are in my life and lives of others.

That being said, I am so very grateful for the health of my children. I have spent endless hours worrying and crying for these children who have suffered and left this world. Even as difficult as Zachary's RAD/asthma has been, I know I could have it so much worse.

Bless all of you - those mothers with children on earth and those with angels in heaven. Have a wonderful Mother's Day.

Susan


Tuesday, April 26, 2005 9:13 AM CDT

I have to say - Zachary is really healthy right now. I hesitate to even say that as it might come back to haunt me. Even when he gets a cold, he gets through it pretty good. It takes him a bit longer than anyone else to get over it, but he's doing so much better than he was at this time last year. I was in the doctor's office almost every other day last year with him. He was so sick for such a long time. My boy has come a long way!

He still seems a little behind on growth but I am sure he will eventually catch up. He adds many new words to his vocabulary every day. He's so funny and laughs so much.

The girls are well too. I think we are finally out of vacation mode and back to normal. Hannah wasn't feeling great yesterday or this morning but has testing at school she couldn't miss. I think she will be fine.

Have a good one!!
Susan


Tuesday, April 19, 2005 9:03 AM CDT

Ten years ago today, the Alfred P. Murrah Building had a portion of it blown off because a monster put a bomb in front of it. At the time, it seemed totally unbelievable that something like that could happen in the United States. After April 19, 1995 and September 11, 2001, we all know anything can happen.

168 lives - gone just like that. 19 precious little children some barely alive for more than 6 months, just learning to crawl or pulling themselves up. Now there parents have had to live with what could have been. Unfortunately it happens every day. Children die from a terrible disease such as cancer, babies are born prematurely, and horrific accidents happen. All of those parents are left wondering, "What if?"

At the time of the Oklahoma City bombing, I didn't fully understand the pain of those mothers and fathers. We lived in Kansas City and I was near the end of my first trimester of my first pregnancy. I felt horrible for those people and I cried for them but until I had my own children, I didn't understand the horrific pain they will go through until the end of their life. I believe in time you learn to live with it but you never, ever get over that loss.

Five months later, I lost my own brother. He had been living with kidney failure for ten years and his body just couldn't go anymore. I was devastated but still didn't understand the pain my own parents felt. I still don't think I do. I haven't lost a child that way. I did have two miscarriages but it's not the same as losing a living and breathing child.

I pray today for all the families in that lost a loved one in the Oklahoma City bombing. I also pray for all those who have lost children for whatever reason whether it's an accident, being born too soon, or a childhood disease.

Don't ever forget about those who have lost someone near and dear to them. Don't be afraid to mention their names. I think it means the world to those who are silently grieving.

Hug your families!!
Susan


Thursday, April 7, 2005 2:31pm

Zachary had his "spring" check-up with Dr. McNamara yesterday. It was a great check-up - Zachary didn't even have a cow when he being checked over. He has spent so much time in his life with doctors, he doesn't want anything to do with that. He did great though.

We are down to pulmicort once per day unless of course he hits the yellow zone and then we go back to the normal routine. From Memorial Day to Labor Day - he doesn't have to have it at all!! YEAH! But once school rolls around, we are back to the usual routine.

Oh yeah, everyone in our family is getting a flu shot next fall!!

Hugs,
Susan


Sunday, April 3, 2005 1:57pm CST

Please join me in prayer in the loss The Holy Father, Pope John Paul II. The world has lost a wonderful leader and man full of faith. Heaven is rejoicing!!


Baby Marko flew to heaven on Wednesday, January 26, 2005 while in the arms of his mommy and daddy. His time on this earth was too short but he taught me a few things along the way.

Faith, hope and love.......he renewed my faith by being born so early and being so strong. He allowed me to have lots of hope when sometimes it's very hard to. And love..that baby brought people together and showed them how precious life is. You never know how long you will have someone so you must make the most of every minute.

"God's Loan"

"I'll lend to you for a little time,
A child of mine," He said,
"For you to love the while he lives
And mourn for when he's dead.

"It may be six or seven years
Or twenty-two or three,
But will you till I call him back,
Take care of him for me.

He'll bring you charms to gladden you
And should his stay be brief,
You'll have these precious memories
As solace for your grief.

"I cannot promise he will stay
Since all from earth return.
But there are lessons taught down there
I want this child to learn.

"I've looked this world over,
In my search for teachers true.
In the crowds that throng life's land,
I have selected you.

"Now will you give him all your love
Not think the labour vain,
Nor hate me when I come to call
To take him back again?"

It seems to me I heard them say,
"Dear Lord, thy will be done.
For all the joys a child shall bring,
The risk of grief we'll run.

"We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known
Forever grateful stay.

"And should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that comes
And try to understand."

I'm not sure we can ever understand but have faith that sweet little Marko will be reunited with his mommy and daddy someday.


Wednesday, January 26, 2005 9:25 AM CST

My thoughts today are with my friends, Steve and Becky Bratulich and their sweet son, Marko.

Marko was born at 23 weeks on 1/3/05 weighing lb 8oz. He has been fighting and fighting but the fight is almost over. There are too many obstacles for him to overcome and now his parents face the nightmare that too many parents do...letting their baby go and be with Jesus.

I often question why this happens even though I have a lot of faith and belief in God. I think it's just human nature. Why do these wonderful people lose their baby, their firstborn?? It tears me up inside to think of the pain and grief they are feeling. I've lost two children myself to miscarriage and remember too well how that felt. I never got to know those children. It's so different when they are here and fighting but there is nothing that can be done.

There is a link to baby Marko's site below if you would like to leave them a message of good thoughts.

All I can do is pray. Please join me in doing that.

Hug your babies,
Susan


Thursday, January 20, 2005 8:25 AM CST

The bitter cold has left Minnesota for now thank goodness. We are supposed to get more snow which would be good. We love to play in it!

Zachary has a nasty cough right now but otherwise he seems to be doing well. We have discovered he has a really bad temper though. Doug put him in his crib the other night and he was not happy about it. I would say he screamed for a good 30 minutes at least. I then went and got him to try to calm him. He got away from me and just stood in front of Doug and me and screamed and stomped his feet and turned in circles. I've never seen anything like it. You couldn't help but laugh at first. He was so MAD! I finally got him to calm down by singing to him, which is a scary sound for most people, but it works for him. I guess he's showing us what age 2 might be like with him. Doug thought he had a lot of gray hair, I think it's going to get worse.

Please continue to pray for baby Marko and Ben Bowen.

Have a blessed day,
Susan

UPDATE:
Just talked to Marko's dad and he is doing much better. He is fighting the infection and the spinal tap came back negative. Great news!! If he continues in this direction, he will be back in Mom and Dad's arms by this weekend! Go Marko!!


Monday, January 17, 2005 6:00 AM CST

Today I am asking for prayers, prayers, prayers for two families.

First for my daughter Hannah's teacher, his wife and their newborn baby, Marko. Marko was born on 1/3 at about 23 weeks. At birth he weighed 1lb 8oz and 12 inches long. He is a very, very strong little boy. He has developed an infection though and is on antibiotics but needs prayers. Please remember this wonderful family in your thoughts.

http://www.caringbridge.com/mn/markobratulich

Next is the Bowen family from West Virgina. Ben is a sweet little 2yr old boy suffering from a rare brain tumor. Ben is in the end stages of his disease but continues to fight. It is so apparent as his parents try to control his pain but he is agitated. This family is full of faith, never waivering with all they have been through. Ben's father is a firefighter who worked to recover remains at the World Trade Center site.

Please take time to pray for this family and sign their guestbook if you can. It is very uplifting to them to get messages.

http://www.bens-story.com/pages/3/index.htm

Please be thankful for your blessings!

Susan


Sunday, January 16, 2005 3:04 PM CST

When I am frustrated and weary, I read this as a reminder of how I need to be grateful for my children. There are so many I know who have lost a child.....Hug your kids! Feel fortunate that God has lent them to you. You never know when it will be time to go to heaven...........

"I'll lend to you for a little time,
A child of mine," He said,
"For you to love the while he lives
And mourn for when he's dead.

"It may be six or seven years
Or twenty-two or three,
But will you till I call him back,
Take care of him for me.

He'll bring you charms to gladden you
And should his stay be brief,
You'll have these precious memories
As solace for your grief.

"I cannot promise he will stay
Since all from earth return.
But there are lessons taught down there
I want this child to learn.

"I've looked this world over,
In my search for teachers true.
In the crowds that throng life's land,
I have selected you.

"Now will you give him all your love
Not think the labour vain,
Nor hate me when I come to call
To take him back again?"

It seems to me I heard them say,
"Dear Lord, thy will be done.
For all the joys a child shall bring,
The risk of grief we'll run.

"We'll shelter him with tenderness,
We'll love him while we may,
And for the happiness we've known
Forever grateful stay.

"And should the angels call for him
Much sooner than we've planned,
We'll brave the bitter grief that comes
And try to understand."


Friday, January 14, 2005 9:00 AM CST

Holy crap! It's cold here in Minnesota!

Zachary sounds terrible today. His cough sounds like his lungs are going to come up! Poor guy. It's good that I can just keep him in and out of this cold air. He just couldn't handle it at all. Sarah didn't have preschool today as school was two hours late. Hannah wasn't feeling so hot in the middle of the night or this morning so I decided to keep her home. If she's coming down with something, I don't want it spread around in her classroom. Her teacher really doesn't need that right now as he and his wife just had a baby that is a preemie and they don't need to get sick!

Regardless he is still running around and playing. He has to feel really, really bad to not do that. I think he has just adapted to what he has to live with. That seems a lot easier for kids to do than adults.

I still have to get over the guilt I have of having a c-section early. Even though they did an amnio and his lungs were developed, I always wonder if he had stayed in a few more weeks, maybe he wouldn't have this disease. On the other hand, it may not have made a difference either way. That's what the doctor's tell me but mother's always live with guilt.

Have a great day and stay warm!

Susan


Thursday, January 13, 2005 11:33 AM CST

Well as you can see above, Zachary had lots of fun in the snow yesterday. First he wasn't too sure because of trying to walk in his snow boots, but he got the hang of it quickly. He decided he needed to smear snow on my camera and yell, "No!" That is his favorite choice of word lately. It's all he ever says. The joys of toddlerhood!

I should have had my camcorder out recording him laughing at Hannah and Sarah. They were throwing the snow up in the air and he thought that was the funniest thing ever.

I'm glad he got to enjoy it because he is housebound for the next few days. It's a cold one right now! Our temp is -2 with a windchill of -24. Winds are 15-25 mph. A little nippy! Guess I have no excuse but to work on those household projects.

Enjoy your time with your kids!!

Susan


Wednesday, January 12, 2005 8:59 AM CST

It's snowing!!! It's amazing that someone in who lives in Minnesota would get this excited about snow but I am and probably everyone else I know is too. We have had a major snow drought.

On the bad side of this however is it's going to get very frigid in the next few days. When it gets that cold I have no option but to keep Zachary at home. When that really cold air hits him, he has a very, very difficult time breathing. So if it stops snowing a bit sometime today, I will be getting him outside to enjoy it before that cold air sweeps in. He was so excited to see it this morning. He was so happy. I'll be interested to see how he reacts when he gets out in it.

Have a wonderful day!!

Susan


Tuesday, January 11, 2005 3:34 PM CST

Zachary has had a better day today. He seems to be feeling good without a lot of coughing or wheezing. He adds new words to his vocabulary each day and his favorite of course is, "No!" Everything is no. I try to not even say it.

He has taken on another new thing - hitting! He thinks its funny of course and sometimes it's hard not to smile at those dimples. He's such a stinker! Of course when he gets in trouble then he incorporates lots of drama. He puts his hands over his eyes and lays his head down as if he is devastated!

I supposed this is part of living with a 20 month old. I can deal with this as long as he stays healthy. The thought of him getting sick and doctors, just makes me cringe.

Hope your day is great!

Susan


Monday, January 10, 2005 7:56 PM CST

I've had Zachary down to one nebulizer treatment per day but will now go back up to at least two. He had a coughing episode this morning which forced him to vomit. All mommy's fault! I didn't have time to give him his treatment before I had to leave.

Besides today, he has been doing very well. He had a few times over the holidays where his breathing was labored but we got it under control quickly. As times goes by, I seem to know when he is going to have a problem and try to keep it from getting out of control. Thankfully we have not entered the "red zone". Children with these type of issues are usually put on a treatment plan with different zones; green=good (maintenance), yellow=getting a cold (up treatments), and red=bad (go to the hospital!).

I have to say this winter (knock on wood) has been so much better than the last one. I felt like a permanent resident at the hospital.

Take care,
Susan





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