We are coming to grips with normal life with an LVAD is never normal. No day has been the same, and all days present some new and/or trying challenge. Tonight's small example: Danny got out of bed to use the bathroom and a coat hanger that was on the floor got caught on his power cord. He had trouble getting it off and quickly became frustrated. I felt so bad for him that I didn't even find it funny...I think I would have had it been someone else in a different (but similar) situation.
Something happened yesterday morning that I've been worrying/wondering about. I'm not going to discuss it other than to ask for prayers because it's pretty sensitive...the good news is that the Lord will know what the prayer is for and He already has an answer for us!
Danny goes to the dentist first thing in the morning (Wednesday) and he is not at all happy. He has a true phobia of dentists and anxiety is already eating him up. There is a significant connection between teeth and the heart, so it's important that Danny face his fears and go. Part of me thought that maybe he was just exaggerating his phobia a bit, but he told me to imagine being locked in a box with spiders and every other kind of bug in the world on me. No way!! That made me a believer in his phobia. I've known this doctor for many years and know Danny is in good hands.
The prospect of returning to work Monday is just scary and overwhelming. For both of us. Even though his body is recovering, emotionally we are both still pretty raw I think. I feel selfish even thinking about how I feel because I cannot even imagine how he must feel...but I'm scared, tired, overwhelmed, faith-doubting, disappointed/angry at my faith-doubting, did I say tired? I'm learning and working through some parenting strategies that are tough...I'm not a perfect parent and that's so hard. It's important to let our children make their own decisions and therefore suffer their own consequences and/or blessings. That's hard. I've come to realize that I'm a controlling nut and I don't want to be. How do people go through life without God? It's hard enough with Him.
After the dentist appt in the morning, we go to New Orleans. He's having a CT scan done to show the docs exactly where the LVAD is currently (it shifts). He should be reactivated on the transplant list tomorrow. That's another whole level of overwhelming and scary. I don't know how to be prepared for the emotional roller coaster that is getting the "call" and then finding out many hours later that Danny wasn't a perfect match. Also, it's terrible to receive the gift of life through someone else's death. So now I'm thinking of God having his son Jesus die on the cross to pay for the sins of man. Jesus felt emotions like we do when he was living on Earth...how did he choose to die willingly? Because he loved us (all of us) so much. He had the strength to die willingly because he kept his eyes and heart solely focused on his Father. organ donation (through death) isn't exactly the same I realize because the donor didn't plan to die...but it's still the concept of death for life and I'm just reminded again at how blessed we (humans) are that Jesus died so that we (those who believe in His name)might live (eternally).
Lord, I pray that Danny's donor knows you and is prepared for eternity. Prepare the donor and his/her family for what is to come and provide comfort & peace as only you can when the time comes. Help us to never take for granted or forget the precious gift Danny will receive. Help us to trust you with our fears, failures, doubts, frustrations...Teach Maggie and Charlie about you through this whole experience...your love, mercy, kindness, patience, gentleness, hugging arms, carrying arms, strength, courage, wisdom, responsibility, and whatever else there is to be learned from this. What you can do in them is limitless and I pray that you would keep them. Though all four of us are in different places emotionally right now...all of our needs are great and can be met best through you. Draw our eyes to you so that we are solely focused on you.
One of the doctors calls Danny "heart boy" and my brother had fun illustrating that on Danny's bandage...
D definitely has those muscly arms!!!!
I'd just really like to be able to paint that sky!
This little guy is way too cute to not be included...my nephew!!
Thanks for your prayers...it's what keeps us going!