What it’s like for a sibling?

A couple of days ago we were all out for lunch as a family. I had taken most of the day off after a busy week of travelling for work. I have been trying really hard to be conscience of how this is all impacting Carly but at lunch the other day I realized how hard it has been. She said “You guys argue so much.” I said “What do you mean?” She said “You guys are always so serious and talking about so much.” I then realized that my sensitive sweet girl is picking up on the stress and anxiety we are feeling as we prepare for William’s surgery. This also made me realize that we need to be mindful of not talking about the surgery and preparing for it too much while kids are up. I find that it is always on my mind so I need to take more times to just chill, be goofy with kids and take some downtime myself. I decided to then ask Carly some questions and this is how she answered.

Do you have any concerns about William’s surgery?

“I’m feeling a little scared.” “I have a weird feeling.”

Do you find it hard that you know Mom and Dad will be at the hospital a lot?

“It’s hard because I won’t get to spend much time with you.”

What would help you to make things easier when we are not around?

“If I had a special small stuffie with a clip on it and I could carry it everywhere I went. You can put hugs and kisses in it and then I have them for whenever I need them. I would also like to bring Lion, and my dolls and some of my favorite things.”

She also said William is going to really miss playing hockey and running around and I’m sad for that.

Any family going through a difficult time together will have ups and downs but I know that the best thing we have done was to talk about it together and be honest about what is going on in an age appropriate way.  Now time to find a stuffie on a key chain!

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Emotional Rollercoaster

 

This week has been filled with so many ups and downs that I am glad I was able to take most of the day off to spend with the kids. With my position at the Heart and Stroke Foundation, one of the things I do is help schools run Jump Rope for Heart. Doing their kick-off presentations has always been one of the most enjoyable parts of my job. I love seeing the kids get excited about the program but also having the opportunity to share my connection to the Heart and Stroke Foundation. William is the reason that I took this position and I feel blessed to be able to share my story and to connect with many people who have gone through similar or more difficult situations.

Since getting William’s surgery date I have found it more challenging to present to the schools. I was literally sitting in the car taking deep breaths and saying you can do this to myself. I felt so proud that I had made it through the presentation without crying. I never thought that I would find it so hard.

This week the presentations have been easier but the emotions are still there and I feel so blessed to have all the support from the wonderful schools that I get to work with. Yesterday I presented at St. Brieux School and I was quite nervous as I was having an emotional day. I took my time and went over things slowly. Once I told the children about how William had asked if fixing the hole in his heart was like fixing a tire and the kids all smiled or giggled it helped. I could tell they were connecting as well. After the presentation was done the students of the skipping team presented me with this beautiful card for William. They had known that their presentation was moved up because we had a surgery date. Inside the card it says things like:

“Good Luck, Be Strong”

“Hope you feel better soon”

“We all hope you get better”

“Hope your surgery goes well”

It meant a lot to me that they did this for William. After the other students left the gym they were able to ask me questions  and I was happy to connect with them more.

My emotions have been all over the map because I have been feeling so blessed by all the love and support people have shown us this week but have also seen the impact and support that we can provide to other people going through what we are. Sometimes I feel undeserving of all the support and often think that there are people that could use this support more. There have been people that I don’t even know, or know that well offering to help. There have been friends that I never get enough time to spend with and family that have supported in more ways than I think they understand. I feel truly blessed to have all the support and love we are receiving. Right now things are so busy but I want everyone to know that all the conversations, texts, well wishes, financial and emotional support have meant so much to me. Your support inspires me to continue to share our journey and to pay it forward. Thank-you from the bottom of my heart! ❤️

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Little Hearts Family Group

Yesterday evening I spoke with Charlotte from the Little Hearts Family Group. Speaking with her about her experience through her son’s numerous open heart surgeries and recovery has been so helpful to us. I know her and her husband along with other members of Little Hearts Family Group just want to help other people who are going through what they have gone through. I also know I can call them anytime which means more than I think they know. I met with her and her husband a few weeks back after seeing their pamphlet in our package from the hospital. I was feeling overwhelmed with all the information that is given to you so I reached out to them. You receive a package from RUH in Saskatoon as well as from the Stollery in Edmonton. There is a lot of great information but for me nothing compares to talking to someone that has been through it.

We met for coffee and discussed what they had been through and any questions I had. I think it’s one thing to read through information but it’s a complete different thing to hear first hand what it was like. I find I absorbed more and felt more prepared. I think the hardest part of the conversation was when Jason, Charlotte’s husband asked me if I wanted to see a picture of their son after surgery. Seeing the picture was overwhelming, I guess I wasn’t expecting so many tubes and machines. I think if they hadn’t shared this with me I would completely lose it in a few weeks when he comes out of surgery. When you read through the After Surgery information in your package you can’t really picture what it will look like. The Little Heart Family Group is a Saskatchewan family support group for children with an acquired or congenital heart condition and their families. Their website is: http://www.sasklittlehearts.com

Thank-you Charlotte and Jason from the bottom of our hearts for giving us support that has truly helped us to feel more prepared.

William’s Pre-Op Questions

This morning we were getting ready to leave to bring Carly to school and William asked if he had daycare. I said that you have a Dr. appointment today. He said “I’m not putting my jacket and boots on, never ever!” “Is the Dr. going to hurt me when he fixes my heart?” I said “The doctor will give you special medicine so that you don’t feel pain but today is just your eye appointment not your surgery.” Then he was fine to get dressed and he visibly relaxed.

In the car he asked me how they fix the hole in his heart. I told him that they will put a special patch on his heart to cover the hole. He said “Is it like when you have a hole in a tire and they put a patch on it?” I was so amazed that he made that comparison. He then said once the hole is fixed the air will stay in and not keep coming out. I then told him that then the blood in his heart will go where it needs to to keep him healthy. I feel so fortunate that he talks so well and asks lots of questions because then he will understand as much as he can or should for now. Each day he asks us if it is today that they will fix his heart. In fifteen more days we will be able to answer yes to that question.

Sibling Convo

William: Carly you can’t lay on me like that when I have my surgery
Carly: I know that! That’s why I’m doing it now. I’m also going to pick you up lots because I can’t do that after your surgery either
William: Oh!

Understands more than sometimes I think. He asked if he could go tomorrow for his surgery and get his heart fixed 💞

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Hockey Fan!

William absolutely loves hockey!!! So unfortunately now I have two people in the house wanting to watch hockey and it’s harder to say no the little one asking. William has taken over the living room rug as his ice. He will not allow anyone to lay on it, change his diaper on it or put anything on it. This has caused the odd sibling dispute. He plays hockey on there anytime we are home and announces the plays as he goes.

On Wednesday, January 13th at the CJVR CK750 sponsor Melfort Mustangs hockey game in support of the Heart and Stroke Foundation William was the 7th man. He went in the dressing room before the game to meet the players, watched the warm-up from the player’s box and was on the ice for the national anthem. Then the highlight for him was when he got to drop the puck to start the game. He told me that he gets to be the referee for the game. He was beyond excited and I cannot thank the Melfort Mustangs enough for this opportunity.

How inquisitive kids are!

This morning I was getting William dressed and he said to me “Mom the doctor needs to fix my bones”. I said “What do you mean?” He said they are sticking up all funny and was pointing to his ribs. I said “No that’s the way they should be”. He just said “Weird!” He has always had a large vocabulary for a three year old and has such a great sense of humor.

Every time I get William dressed or put him in the bath I think about how his chest will soon never look the same. They will cut his breast bone for his open heart surgery and he will have a scar that will never fully go away. It’s hard not to think about and it. It was hard to not break down this morning when all he was doing was being his inquisitive self.

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William Summer 2014