Remembering past Halloweens

Hadley's First Halloween

Karson's First Halloween

Karson was here for 3 Halloweens but only got to dress up for 2 because he was sick.

Last year Halloween was the best ever! Karson was feeling good so we took him to trunk or treat with Hadley and they had the best time.

I won't lie it's hard without him. If he was I would dress him up like Woody.

Disney World Trip

Swan And Dolphin Hotel
Hadley had lots of fun in the kids activity
room. As you can see she had her face painted and she was able to choose what animals she wanted stuffed (it's kindof like build-a-bear). She made her a monkey and she made the giraffe for Karson that Dr. Swoboda's holding. The other cute lady is Dr. Reyna. I love these ladies!

I love these ladies too Donata and Abby
Hadley made her crown too.

This is Veronica with Hadley. I can't believe she's 7 with Type 1.

Cute little Nora always had a smile

This family was so sweet. This cute baby is named Journey and she has Type 1.

Hadley got this in the activity room.

We got a free ticket to the Epcot with the Conference. Thank goodness it was free because it rained soooooooo hard.

We loved this band! They were playing at the Epcot

This was the SMA Party at the Epcot. Everyone was soaking wet!

There’s so much I need to talk about since this last January. I'm going to start talking about our Disney World Trip but I'm going to have to do several posts about it because there are so many pictures.

This Summer we had the oppourtunity to go to Disney World. It was our first vacation since before Karson was born, so we were way overdue. Every summer there is a SMA Conference and this last June it was held in Orlando Florida. The Conference was held in the Disney Dolphin and Swan Hotel right by all of the Disney parks.

The first day we got to the Conference they were having the meet and greet. We were able to meet people that we had only talked to over the internet and see our friends from here too. It was such a wonderful experience to be around so many people that knew how we felt.

It was so cute to see tons of little kids in electric wheelchairs racing through the halls. There were all ages of people with different types of SMA. There were lots of oppourtunites for the kids to meet the Disney characters and tons of fun activities that Hadley was able to go to. It was so good for Hadley to see all of these other kids that knew how she felt and also seeing all of these other kids that did have SMA. Hadley made lots of friends while we were at the Conference but there was one really special little girl she bonded with named Veronica. Hadley actually met her when they were both 4 yrs and Karson was in the hospital and Veronica was there visiting Dr. Swoboda. Veronica has SMA and although she couldn’t talk to Hadley they just had so much fun being around each other.

We constantly were thinking of Karson and we felt like we were honoring him by being there. It truly helped us with our grieving.

After the conference was over we stayed and extra 5 day’s to go to all of the parks. We went to Magic Kingdom, Sea World, Universal Studios, and Hollywood Studios. We had the best time!! There was so much to do we could have stayed another week .

Make A Wish Party

Last November we were able to Make a Wish for Karson. Our first choice was Disney Land but as time went on Karson was just to unstable. (I know I’ve already done a post about his bed) We decided to get a full size bed so that we could lay by him. That bed was truly a blessing. We also wanted to do a party with characters but there was like a year waiting list for Woody and his friends to come. They still continued to plan and they found some teenagers to dress up like Woody, Jessie, and the army guy.
Karson wasn’t doing so well but the wish granters continued to plan his party and I’m so glad he did. Unfortunately Karson didn’t make it to his party but we were able to have it a couple days after his funeral. We loved it because it was all about Karson and wonderful way to honor him. Our family and friends were there with us. It meant so much to us to have that support from them.
They had the characters walking around interacting with everyone and they even sang the Toy Story song.Hadley LOVED it!! She had so much fun with Jessie.
They had pizza and cake for everyone then we were able to sign Karsons star and then Hadley was able to raise it up with all of the other stars. I loved that some of his friends stars were up there with his.

Missing Him

Karson loved to clap his hands

The black circle is going to be a picture of Karson.

It's been 6 months already since he left us but someday's it feels like yesterday. It's been really hard to learn how to live without him! Everything is still in the same place and I just can't bring myself to put his machines away. When I hear a high pitch sound it still makes my heart rate increase thinking for a split second it's his alarms going off . I think about him a million times a day and just wish he was here and healthy.

Catching up

Sorry it's been so long since I last posted. I guess I have let the grieving consume a lot of my time. I have so much to post about so I will be updating my blog often.

First, I have to talk about Hadley. She turned 7 on April 16th (the same week Karson turned 3). We are so proud of her the strength and faith that she has. It definitely hasn't been easy for her, she too is going through the grieving process and it is a slow process. She has been struggling with anxiety so we have taken her to therapy and I pray that she will be able to one day be rid of it permanately. She just misses Karson so much. He was the one that could comfort her the most just by me wrapping his arms around her. I remind her all the time that Heavenly Father is slowly sewing our hearts back together. She is so cute this one night as I was tucking her in bed she told me that she could feel Heavenly Father sewing her heart. Most of the time she thinks he's with her. She'll set him a place at the table or buckle him in the car. She takes him where ever she goes . I hope that Hadley will one day be able to help other kids that are in her same situation.

Happy Birthday Karson!

Karson's Birthday Chimes Karson's Birthday Balloons

April 12th 2008 our beautiful son Karson was born. The day he was born he began to fight to live and now it's our turn to fight. We miss him more than anything. We have had to learn how to live again without our sweetheart and it's been very difficult. I still hear his monitor beep, I still look up at the pulse ox to see his sats (oxygen level) and the list goes on. It gives us comfort knowing that he doesn't have to struggle anymore and that he's free of his broken body! We are happy for him but our hearts ache and I'm sure they will until we see him again. Today we had a Toy Story party for him and I wanted to share some of the peoms that were shared with us. The first one was given to us by Kristen (Darren's sister). The picture above of the woody wind chimes goes with this:

Think of me as Karson's voice, here to make your day I hope that when you here me, a smile will come your way. I hope that I remind you of your precious little son, that touched the heart and soul of simply-everyone, As I blow in the wind and sing a pretty song- know that Karson loves you and won't be gone for long, To infinity and beyond is where Karson is for now; I know our Savior will help you get through this time some how, Each time you hear me chime a tune, think of Karson's love, And know that he is safe and happy with our Father above.

The next one is from our Grandma Sorensen.

I will lend 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 his charms to gladden you, And should his stay be brief. You'll have his lovely 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 the wide world over, In search for teachers true. And from the throngs that crowd life's lanes, I have selected you. Now will you give him all your love, Nor think the labour vain. Nor hate me when I come To take him home again? I fancied that I heard them say, 'Dear Lord, Thy will be done!' For all the joys Thy 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. But should the angels call for him, Much sooner than we've planned. We'll brave the bitter grief that comes, And try to understand.

Then finally from my friend Gayle.

A sweet little child, at a party one day, when toys were being given away, discovered a broken one and with a smile said, "I'll take it you see, I know my Daddy can fix anything, and soon it will be good as new." And once, perhaps, in Heaven one day, when bodies were being given away, A sweet little child, discovered a broken one, and with a smile said, "I'll take it, you see, I know my father can fix anything and someday it will be good as new"

Thank You all for your love and support!!!

The video clip below is of Karson swimming in the bath...I miss him sooooooooo much!!!

I wrote this down for us and our kids as a journal entry. Darren and I debated on whether to post this because it's so personal and I probably will take it off in a few days. We decided to post it with the idea it could help another family in a similar situation.

I haven’t felt like doing this post because it’s a day I don’t like to think about but I know people would like to know about the day Karson passed. Maybe if I write about this it will help me with the grief and I won’t have to tell this story again.
It was Saturday January 8th and Karson started showing signs of distress. His sats (O2 level) were low 90’s and he already had about 5 liters of O2 running through his Bi-pap. The next afternoon I had him on 10 liters of oxygen and that’s the highest our concentrater would go. I had checked his temp and it was almost 103 and his Heart Rate was ranging from 150’s to 170’s so I knew he had a virus . I did the cough assist more because it seemed to be respiratory since his sats were so bad but when I listened to his lungs they sounded clear. We all knew, even Hadley, that no matter what we weren’t taking him to the hospital. Sunday night I slept with him (thank goodness for his new bed) but not soundly because I listened to him making a sound of distress. I was giving him Morphine to take away the hunger for air but he still made the sound of distress. The next couple of days his heart rate and sats were doing better but he was still in distress even with having Morphine every 2 hours. We just kept thinking and praying that it would pass. I continued to sleep by him the next few nights. I’m so glad for the chance to lay by him and hold his hand and snuggle close . Darren and I have talked many times about what we would do if Karson was suffering. We decided long ago that we would always do what’s best for Karson, even if that meant taking off his Bi-pap and letting him go. Well that early morning we were talking about it again not knowing what to do, so we knelt down and prayed and then went to bed. . Soon after that I woke Darren up because I was so worried about Karson. We wanted to see if this would pass but he was really struggling. Once again we were on our knees pleading with Heavenly Father to have Karson tell us what he wanted us to do. About 15 minutes later he got even worse. I then decided to call Dr. Swoboda so she could listen to his breathing. She said that his stomach was probably shutting down so the Morphine I was giving him wasn’t being absorbed. She told me to give him a shot of Morphine in his leg and to call her back to see if it helped. Within 5 minutes Karson was the most relaxed that I had seen him in 5 days. He stopped making that distressing sound and was able to go to sleep. Dr. Swoboda had then called back and was asking me if we were thinking that it’s time to take the Bi-pap off. I looked over at Karson and I thought to myself I can’t do it . She then told me that either way her ,Whit, and Abby were going to come and see us because of how much they love us and Karson. I hung up the phone, looked at Karson and thought to myself I’m not doing it today. A few hours later they arrived and the first words out of my mouth was “I’m not doing it today”. Dr. Swoboda started to examine Karson and couldn’t find anything that would be causing this. She did bring to our attention that Karson wasn’t even trying to breathe the bi-pap was just blowing the air in. His poor little body was worn out. She then talked to us about taking the bi-pap off because she didn’t want him to have a respiratory arrest at 3 a.m. and have it turn out bad. I always thought that I was doing what was best for Karson but I realized at that moment that time I was thinking of myself. I saw how relaxed he was and I thought that I could continue to give him shots and everything will be fine. Darren knew that it was time when I had given Karson the shot of morphine in the leg, Karson just cried and cried because it was so painful for him and if that is what it took for us to keep him here Darren was not willing to put Karson through that. But for me it took Whit telling me to take my feelings out of the situation and focus on what Karson wanted and what was best for him. It was at that moment that I looked at Karson and I just knew that he was so tired and he had fought for so long to stay with us. I then received a confirmation that it was time. We both had come to the heartbreaking, life altering decision that I wish no parent ever had to make, it was time to let our sweet baby boy go. Then Dr. Swoboda gave him a shot of Versed and another shot of Morphine to help him relax so he wouldn’t freak out when his bi-pap came off. A few minutes later, Dr. Swoboda began to take the bi-pap off and I stopped her because I needed to be the one to take it off, so I finished taking his mask off and he didn’t react at all. It didn’t take long for his color to change and for the first time in over two and a half years I picked up my baby without anything to support under him. I held him while Darren and I hugged and kissed him and told him how much we loved him and how proud we were of him. Within seconds he stopped breathing and finally I was able to hold him the way I have wanted to ever since he was diagnosed, like a normal little kid. I put his head on my shoulder with his chest against my chest and just held him. Darren then held him and even after 10 to 15 minutes his heart was still beating, but shortly after that he did pass away in his Daddy’s arms. Unfortunately, we were rushed because Hadley had a short day at school and we didn’t want her to see him. Darren then wrapped him in his blanket and carried him out to Dr. Swoboda’s car. It was very comforting to have her take him. He then went to primary’s to have an autopsy to help with SMA research. To this day everything is in the same place even his feeding bag and the garbage that was in the trash can. I don’t know if and when I could ever move or throw anything away. We now know that it doesn’t matter how long you have to prepare for the death of your child it doesn’t make it any easier.