I have confidence in my surgeon’s ability to pull it off. I don’t doubt that. But, I fear the recovery. Will I be claustrophobic? I have felt uncomfortable in the past for simple procedures. Will I go crazy or feel extremely restless? I've experienced some of those feelings before in the hospital and this is my greatest fear. I'm not afraid of the surgery and the physical pain as much as the fear of having no control over my mind and body. I’m sure these questions and emotions are natural. Despite these insecurities, I am at peace knowing that the entire team is prepared.I am also preparing my mind and soul. My daughter, wife, and whole family is on my mind. And now with the sudden death of my dear sweet friend and brother Brian I want to fight that much more. I want to live for these people who I love.
But, my brother Brian inspires me. He climbed the face of mountains and accomplished many great things. As my wife and I climb one of the grandest peaks of our lives I’m ready and comforted because I know he’ll be close by. Others won’t see, feel, or notice him. But, I know he’ll be there along with so many others pulling me up that steep mountain of recovery.
In the meantime, we’ve been spending more time together as a family doing a few fun things. I have some renewed energy, which I attribute to everyone’s prayers and good medicine. In fact, last night we ran for Ice Cream at Baskin' Robbins. My girl Eden always orders the clown, bites off all the decorations, and then offers to trade deserts with my wife. Eden will eat most of Lynnette’s ice cream and then want to swap back leaving her mother an empty cone. We laugh. Eden is a character.My sweet girl has been asking about Brian. We went to the cemetery and she wanted to see what she terms his body as the “pretend” Brian. We told her that he’s not there and has gone to be with Jesus. Trying to explain death to a toddler is quite difficult. It was helpful that the day before Brian’s death Eden and I walked outside to find a dead robin. I said, “Look, it’s not moving.” She asked why? “Because he’s died. The life inside of him went to be with Jesus leaving his body behind.” I got a shovel and we dug a little hole in a section of our garden. I put the bird in the ground and we covered him with the earth. She said, “I want to see it again.” I said we couldn’t, at least not now, but possibly someday. I didn’t realize the profound impact of all of this dying talk until a couple evenings later. It was after Brian’s funeral, while Lynnette was working, Eden slept next to me. With some sadness and frustration on her face she said, “Dad, I don’t want you to go with Jesus.” I told her I would do my best but if I had to go be with Jesus, Brian and the bird would take good care me. She understood.
What a wonderful post. I have to tell you a secret, I too am claustrophobic, with a pinch of anxiety added to a racing mind. I know your fear exactly, but I know that others have it too, so the Doctors will have just a pinch of medicine for you to be fully relaxed if you let them know how you are feeling. Plus 99% of the things we worry about never even happen and worrying is a waste of precious time. Right? :)
ReplyDeleteI love the ice cream story. One of my favorite memories my was dad and I having pink grapefruit ice cream at Baskin Robbins when I was small. I never liked the cone either ;)
My prayers are with you.
Some of the conversations we get to have with our little ones are so touching! I love moments like that. I have been following your blog for sometime. I LOVE your music, it's all we play in our car! My favorite is the childrens songs. You are so talented and I just wanted you to know that you are in my thoughts and prayers. You are such a strong and amazing person. When I've had a bad day I always look at your blog to see your amazing spirit. You have such a Christ Like heart, and it's always what I need to hear on a bad day! May the Lord be with you and your sweet family always! And hang in there...it's so close I can feel it!
ReplyDeleteThese sweet little spirits understand so much more than we think they do. Garrett also called him the "pretend Brian" (maybe he got it from Eden). He asks about Brian and death a lot as well. We also want you to stick around for many many more ice cream dates!
ReplyDeletePaul:
ReplyDeleteYou amaze me brother. Your faith and trust in god and the medical team help give me strength as we approach this mountain as a family.
Brian inspires me as well. Life can end at any minute for any of us. We have to live, love and cherish every moment as he did. But if we are taken, Brian will be there (along with the robyn) to greets us with open arms.
I have no doubt you will climb this mountain as well as others in your life with amazing success.
I have to say that I think Eden is a very lucky little girl. It just isn't common for a child to get to spend so much time with their daddy. My children wake up every day and ask if daddy is at work, or if it is Saturday. They live for the weekend when they get to spend two whole days with daddy. I can only imagine the bond you two share. So special.
ReplyDeleteI am a stay at home mom & I often wish my husband could experience some of the day to day happenings.
Anyway, thanks for sharing, as always!
Brian
ReplyDeleteI am a complete stranger to you, but I must tell you that I have followed your blog for some time now, and you and your sweet little family have been such an inspiration to me and my family. Whenever I am having a hard day or feeling sorry for myself, I log onto this blog, and it puts everything in perspective and makes me realize what is truly important in life-family, friends, and our faith. We pray for you everyday, and can't wait for the day that we log onto this blog and see that you have finally gotten a heart. Thanks for all you do, for your posts that are so inspiring, and keep fighting!
It sounds like you had a perfect moment to teach Eden about life and death. It breaks my heart though, it must be so hard to try and explain to your own child when it is something you are possibly facing... although I pray for healing and full recovery for you and a long healthy life. For myself I don't think it's the dying part that frightens me most, it's the living but not being able to really live. I worked in a nursing home for a while and would come home and tell my husband that when I get old I think the hardest part will be having to slow down, I want to be able to take care of others not others needing to take care of me. It helps to know that God is in the details of every day and all will work together for our good. He's so amazing!
ReplyDeleteHow interesting that you had that experience with the robin right before Brian's death. My son's fish died and we had a fish funeral and a whole family home evening about death. This happened a few months before Annika died, and I was so grateful we had recently had that opportunity to explain it, under less painful and difficult circumstances.
ReplyDeleteI hope Eden gets her wish.
You leave me in tears and speechless. That' last comment from your daughter, well it broke my heart. I hope our Father in Heaven allows you to stay for many years to come.
ReplyDeleteSweet Eden, she's so cute. I can't imagine how you tell children. We have been discussing it with the pallliative care team, so if we have to explain it with Jaxson, we know what to say. Its so, so hard.
ReplyDeleteYou are in my prayers. Still praying for you!
ReplyDeleteI like how you explained to Eden "death". It is hard for a toddler; I had to do the same with Ashleigh. Oh, did you get my message about your brother's website? Email me.
You are such an inspiration. I'm glad to hear that you have energy and that you were able to go to Baskin Robbins. When you have the surgery, you will do great. I know it might be hard to not have control over your body, but there will be prayers for you that will help. Also your brother Brian will give you strength. Eden is so adorable! She looks a lot like you and she's lucky to have such a great father like you. God Bless!
ReplyDeleteWow, what a conversation! Reading it has brought me to tears. You put things in perspective for me every time I read your blog. Thank you!
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ReplyDeleteThank you Paul for sharing this journey with us! Your family seems so amazing! I am sorry to hear about the loss of your brother. Thank you for your example of faith in our Heavenly Father! What a great message of hope in these times. I LOVED your post on enjoying the here and now. I stopped reading the article, and turned to see my 7 year old daughter sitting next to me, making up a book with her own illustrations and words. I was SOBBING. I was just so grateful for her, and I was in the moment! It feels good to be in the present and recognize all of our blessings! Thank you. Thank you. My prayers are with you and your family. Your daughter Eden is PRECIOUS!!
ReplyDeleteI have many conversations about death with my children at various ages. It is what happens when you have siblings die. One very very short story that I've found helpful is called "Waterbugs and Dragonflies" by Doris Stickney. You might want to get that and read it with Eden. You can even find it online to read so you don't have to buy a book. I wonder if it would help your brother's wife explain things to her daughter, and the baby in the future. The thing is, once you experience it, as the child grows and their understanding grows, it comes up again and again and they have to learn to reprocess it again in their new understanding. I also try to shy away from saying that my children are with Jesus or that they are in Heaven. Jesus is a resurrected being, and the spirit world is more correctly called "paradise" for those who are resting until resurrection. While I believe that Jesus does in fact visit the spirit world, the same way He sometimes visits this mortal world, I believe He resides in a glorified state with our Father. I have found many people are much too simplistic in explanations (which in some ways you have to be). But if you can start with correct principles, it makes it easier to understand the whole Plan of Salvation and decreases the risk of confusion there. This whole death topic is tricky with children. They can easily become vulnerable or afraid. It is also hard to avoid making them feel they are supposed to feel the same way we do. So much to consider. I think about your brother's wife and child and baby much more than I think about how the rest of you are grieving, because I know how difficult it is to have lost not only that person but the lifestyle/routine that the person was in your daily life. But I do also wonder how you process it all and grieve, or your mom (being a mom who has buried children I think about her a lot) and it's just difficult all around. I'm glad that you mentioned how this is just one more way you will be able to feel more gratitude for the sacrifice that will be made for you.
ReplyDeletePaul,
ReplyDeleteI have been following your blog for several months now. My daughter was diagnosed with genetic cardiomyopathy on Dec. 1, 2008. She received a heart on December 16 and is currently doing will. Please know that your blog is very inspirational to our family. Thank you for your strong faith and your insights into your feelings on your journey. We are praying for you here in Michigan! We love you!
The Butchers
any day, any hour, any minute, you will be blessed with all you have given to others with your kind heart.
ReplyDeleteExtra hugs for needed patience :0)
When my daughter was 4 years old my grandmother died and it prompted lots and lots of questions from my little Emma. I found this great book that helped her so much. I got it at Deseret Book and it's called "What Happens When People Die?" Written by Timothy Robinson. It's this beautiful board book with great illustrations. Just FYI.
ReplyDeleteI stumbled across your blog today.... fate I suppose. I added your blog button to my blog so that everyone can continue to pray for you during your journey with CHD.
ReplyDeleteYour music is just beautiful....I am on my way now to order your CD. My daughter has a chromosome deletion and she is very interested in piano music. How wonderful this will be for her.
Thank you for your inspiration.
Christina
I pray and pray your heart will come soon! Your fears and anxiety are to be expected..but I know your wife, child, family, friends, Heavenly Father, and your dear brother will put his arm around you as your earthly body gets its repair. Then, when you are well, we will play your next collection of songs for my litle Grandson Owen
ReplyDeletewhen he gets his new miracle heart.
Thank you for sharing your talents, your honesty, and putting your innermost feelings out there to help us who are much weaker that we look. Love to your family
OWEN'S GRAMMA VICKI
Dear Paul,
ReplyDeleteI am praying for you and your family. I am so sorry about your brother. I can't imagine the shock and pain this has brought to your lives. I want to thank you for the beautiful music for Gracie. I cried during the entire video. I too lost a baby girl due to an infection and heart defect many years ago. She would have been 19 now. I pray that a heart is found for you very soon and you can be there to watch your precious little girl grow up.