Heart Month Day #23 Future

What does the future hold for Severin? Is he done with surgeries? He's good now right?
We have gotten past the stats and percentiles of viability. Severin is very Heart stable right now. But his future hangs heavy in both our minds. The truth is we just don't know, Doctors don't know, Researchers don't know. I remember the first time I bought Sev some sandals to wear for the next year, he was 3. I was so shocked that I let myself think of him being here the next year, I never had been able to think that way.

From Thoms perspective:
His future is by no choice of his own, it is his burden to bare. But he has and will continue to have all the support in the world to see him through. In spite of whatever challenges he may face, he is here for a reason, and because that reason is only known to the Lord, his future is certainly bright. I've always known that it is not Sev's intent to die, but to live and accomplish great things. The Spirit revealed this to me years ago, and I know that it's true.

Heart Month Day #22 Friendship

Heart Buddies, Heart Moms, BFFs

Everyone is put together for a reason, there is no accident we are part of each others lives

Heart Month Day #21 Family

Our Family has been the best! Supporting us in the way we need it most. I tease and say my parents retired to take care of me for the first year of Severins life. There were too many times they would come for a visit and end up staying because we had to go to the ER.
Beyond our Family we have been blessed with an amazing Ward Family. I will never forget the conversations I had with my very kind and loving Relief Society President. Our Bishop was always there to offer words of support and Priesthood blessings. We never went hungry. Neleh had the best play dates.
I could not go without mentioning our Heart Family. There is something about people who have been there, done that. They really get what is going on. I have been able to forge long lasting friendships with fellow Heart Moms. I love their kids like my own. We celebrate together because we know what it takes to get to where we are. When we get together it as if we have always known each other. It is a true Sisterhood to a club none of us want to be in but we are sure glad we are all in it together. Heart Moms are the strongest bunch of women I know.

Heart Month Day #20 Grief

I have been to too many funerals. I have stood by too many parents as they bury their child. Although I have not lost my child I grieve for their loss. I know I could be in their place at any moment. There is nothing you can say to a parent whose child goes to Heaven, nothing will comfort them, nothing will make the pain stop, nothing will bring their baby back. Some do not want you to say 'sorry for your loss', no one ever wants to hear 'they are in a better place'. I ask you on behalf of those who are grieving their child, please love them, and never forget their child. Because they never will.
My personal grief takes on a different look. I grieve the right after delivery snuggle. I grieve nursing. I grieve blessing him with family all around. I grieve that family couldn't come and see him. I grieve rough housing with Dad. I grieve because I have so much CHD information- the things you didn't know you didn't know. I grieve that he has to have so much pain so early in life. I grieve the winter lock downs to keep him healthy. I grieve that he can't keep up with his friends running. I grieve he gets too hot or too cold. I grieve for his future. I grieve the what ifs.

Heart Month Day #19 Scar

I knew Severin would have a big scar. But he has a lot of little ones too. I have kept a journal for Severin. After each surgery I would draw a "Severin body" and note all the lines he had that would become scars.

I wanted to be able to tell him His story. I wanted to have the answers to his questions about his scars. His physical scars are fading. His chest scar is so light it is hardly noticeable the others are all but gone.

The non physical scars are the ones we worry about now. We have NO idea what the medication he has been on will do for him/to him in the grand scheme of things. He had to deal with a lot of pain at a very young age, before all receptors were developed. It has made him have different coping skills then other children. When he doesn't like what is being said or done he checks out. This appears to people that he is just ignoring or being a brat. He has high pain tolerance. He can be very hurt and not say a word and never cry. This appears to others that he is fine, when he is not. It is treated as "not a big deal" when to him it is the worst thing ever, and he just wants acknowledgement and a hug. He has low physical endurance. This appears that he is being lazy, or that he is disobeying staying with the group. He does the best he can but sometimes his heart hurts. He has to learn to self regulate, and it doesn't look the same way as your kid does. He has to listen to his body-ps he is 5! But he does it, even when he really, really wants to run the bases! One time he self regulated during a game of tag. When we talked to him about it and reminded him of his special heart, and that it was ok to take a break he said "I know or else I will die" Seriously what 5 year old has to think about his own death!!! It is just a reminder to me that everyone has battle scars, not all are seen.

Heart Month Day #18 Hope

If you remember back 5 1/2 years ago to when Severin had his first OHS, it was 3 surgeries in one. He only had a 60% chance of living through it. They would stop and start his heart several times, as each piece of his anatomy was altered. His heart was the size of a walnut. It would be a long day for everyone. The day before surgery, after all the preliminary tests were done and his surgeon had all the information he could without being inside, he came to meet with us. Dr. Kaza and Dr. Mart sat with us in the CICU and explained what was necessary for Severins heart to keep going until the next surgery. Dr. Kaza (not LDS) told us he has prayed for guidance for what to do for our son to have the best outcome. He said he has spent the weekend in the Temple. He told us it does not get more complex then Severins heart. He prepared us for the possibility that he would not live. This is where I could not hold my composure any more and I started to sob. The uncontrollable ugly cry sob. I was so embarrassed for letting my emotions get the best of me. Dr. Kaza hands me some tissues and tells me 'it is ok Mrs. Quist I will do all that I can for your son' all I could say was an inaudible Thank you. The hours that followed after surgery where slow and fast all at the same time. His heart was so swollen from the trauma of the surgery, they could not close his chest. He had a big bandage over it. I sat there holding his hand, only moving when the Nurses reminded me to go pump. Hour after hour Nurses, Intensivists, Nurse Practitioners, Cardiologists would walk past, stop at the foot of his bed, look over the Nurses charts, look at the monitors, look at him and shake their heads. All in Amazement that he was doing so well. At times since I have dealt with guilt, did I WILL him to stay with me when he should have returned to Heavenly Father? Was I being selfish? I have resolved I did not, I simply did my part that I had agreed to do long ago. I loved him. I had HOPE. I would fight as long as he did. It wasn't until a follow up visit after OHS #3 that his Cardiologist, who was SO pleased with Severin, said "I really didn't think this day would come". We spoke silently through our eyes, mine filled with tears. I knew what he meant. Severin should not still be here and yet he is. He is not only living but thriving in a high quality of life way! 

Because of Severins successful Heart Journey he gives hope to others. Because as Parents facing the mountain called CHD in front of us we have nothing more then HOPE. We hold on to HOPE like it is the last thing on earth. In a few months he will be the PICU/CICU Parent Hour presenter, and offer HOPE to those parents first hand.

Heart Month Day #17 Courage

I am so thankful that Courage follows Fear in this journal prompt
.
Some days I have no idea where my courage comes from. But when I think about it I am reminded of a visual I have in my head. It is me kneeling at the feet of my Savior, Jesus Christ. He is telling me about this amazing boy who comes into my life and I get to be his Mother. A Mother is all I ever wanted to be. This boy comes with a set of earthly challenges. He will have an imperfect body. He will struggle. He will have limitations on earth. His time on earth may be short. The reason I get to be this Boys Mother is because my Heavenly Father knows I have the courage to be the Mother he needs. A Mother who isn't afraid, who will speak up for his needs when he doesn't have a voice. A Mother who will research and plan and never stop fighting for him. A Mother who will teach him. Not only all the little things in life but about His life, and His purpose in the greater plan. And I agree.

Every night, when Severin is asleep,  I put my hand on his chest and feel that crazy heart beating inside. And I thank it for giving me one more day with my boy, one more day of being his Mother.