A Mother’s Perspective
Written by Alison Beier
Evan’s kidney transplant is scheduled for Wednesday, March 21st, 17 days away. We’ll be the first and only case that day for the team. My donor surgery is to last 3-4 hours; Evan’s is to last 6-8. Evan will be closely monitored afterward for two weeks and is expected to stay in the hospital for a month post-transplant.
Evan starts a rigorous schedule of immunosuppressants tomorrow, two weeks and a few days before the date. This is one week more than most transplant recipients and much higher doses than the norm.
He’s to be admitted on March 14th, one week before and will undergo two, possibly three, plasmapheresis treatments, among many other intricate preparations. His plan is very detailed and the course of treatment will be determined by many ever-evolving variables. What we concretely know is we have the best Surgeons and Doctors aligned, and this team has plans A, B, and C through X, Y, and Z. As stated in previous posts, this transplant isn’t straightforward and is extremely high-risk; however complex this procedure is, we have been offered hope. He is going to be given this opportunity and a chance at life.
Without a transplant, Evan isn’t guaranteed much time here on earth. With one, though, Evan is given a life and the prospect of a long one at that. Once successful, it’s believed this kidney, an almost perfect 5 of 6 antigen match, will last for up to 30 years. That right there, that glimmer of hope, that’s surely something to hold on to.
Even before Evan was brought into this world, we were given very grave and finite scenarios. Time and time again, we’ve been offered little hope and frightening solutions, but little hope is all we ever needed. From the beginning, his father and I made the decision to stay present, productive, and positive. Some days, it’s a bit easier to stand by our choice. On other days, it’s a struggle, but our decision and the work it takes to follow through is the only thing we have control over. It’s hard for me to accept the fact that I cannot fix everything, snap my fingers, and make my son all better. It’s not something I can easily turn over, but I do it daily. I must.
You see, Evan doesn’t realize his life is any different than yours or mine. He’s by nature a happy boy and loves his life. He has fought diligently and defied medical laws time and time again to be here. He has no idea of the magnitude of his journey and what lies before him. He shouldn’t have to worry about all of that; he’s a two-year-old boy. It’s his job to be a toddler, and it’s mine to ensure he stays the course. I owe it to him to strive to be at my best every moment; worry has no place in the game plan.
Evan and the family have been on lockdown for a few days now, and it’s heightened even more starting tomorrow. We’ve been following Doctors’ orders to avoid the public, and as his donor, I’ve done everything expected of me. Any tasks the Doctors request of us are met, but there is something that separates our family from others before us: our decision to remain focused and positive. To carry out that notion creates this idea of limitless possibility. By that, I mean this: upon learning of Evan’s transplant, I chose to fight as hard as I possibly could for him. I did whatever I could think of. I still do. I didn’t just think; I took and continue to take action. Here’s how:
1. Communicating our specific needs, leaning on others, and asking for positive thoughts and prayers from anyone willing to help.
2. Creating wristbands for people to wear asking the recipient to simply think of Evan every time they glanced at it and share his story with others. We’ve distributed over 500 of them so far.
3. Going online and placing Evan on prayer lists around the world. Ensuring services will be said in his honor.
4. Asking others to have mass, a service, or worship directly in Evan’s name.
5. Designing tee shirts and asking others to wear them on Evan’s transplant day as a symbol of solidarity. The goal being that every single person who sees that shirt on that day will think of Evan. They may not know what the shirt is for, but I believe getting them to purposefully notice it will catapult them into our field of consciousness that day. We’ve sold 179 to date. Envision how many people you see in an entire day, multiply that by 179! Every family member and friend in the hospital transplant day will have a shirt on. Imagine the buzz that alone will create; it’s limitless!
6. Working with alternative medicine via a Qi Gong Master, Psychic, and a team of healers.
7. Creating lists of songs to play to Evan now and when he’s in the hospital. Reading the same stories. Making sure there are familiar patterns developed to establish a calming environment. Taking pictures of things he enjoys so he can have a link to the outside world. Creating a scenario that will feel as normal as possible.
8. Telling Evan every single day multiple times a day how much we love him. Letting him know how strong he is and how much he has accomplished in his life.
9. Indulging Evan in his interests and ever-expanding his awareness and accessibility to those things. Allowing him to fully enjoy his life.
10. Meditating, exercising, eating well, enjoying family time, creating the most healthy and peaceful environment we can in this moment: resting, simply existing in this space.
11. Vacuuming, bleaching, washing, and Lysol-ing every single surface in the house (including walls, ceilings, screens, switches, and accessories). Instilling clean practices. Antibacterial soap for hands and dishes, new sponges, masks, gloves, air purifier, taking apart the vacuum and removing all old dust. Buying a lockable box to place all shoes in upon entering the house. Carrying antibacterial wipes and gel. Ensuring not one precaution is missed.
12. Initiating and creatively working to increase Evan’s protein and caloric intake while balancing his fluid intake with his blood pressure.
13. Communicating every scenario I can think of with his transplant and dialysis teams. Being an active and instrumental part of his team.
14. Making list after list after list to ensure we are always productive and always moving forward.
15. Participating in a voluntary transplant program provided by the insurance company. This one fell right in my lap. When working diligently fortune often does align seamlessly in one’s path; preparation meets opportunity.
16. Not worrying about things out of my control such as the surgery; the money needed to pay for our expenses while he’s in the hospital; or anything I miss in my preparations. Trusting every need will be met. Everything we need will be provided and any energy spent on intangibles is energy wasted.
17. Continuing to give back to others. It’s with our deepest gratitude we are all alive in this moment and it’s important to always give to the universe what we receive or need; the law of reciprocity is ever-evolving.
18. Taking the time to ensure you have the information you need to be of the best service possible to us. If people want to help, I need to ensure we utilize you in the best way we can. It’s important to give to you if we are to expect anything in return.
19. Making sure you understand how much we love and appreciate you and your efforts. Without the masses, what Evan does, and what this family does, would not be possible. You’re an integral part of the team. Thank you for always being there.
20. Continuing to take the next indicated action, whatever it may be. As long as we’re moving forward, as long as we’re doing everything in our power, the answers and support will come. They always do.
It’s interesting really; by admitting I have no control, by accepting the things I cannot change, I am given this world of unending possibility. I am inspired! Do you see the distinction? Yes, there are many tangible reasons why Evan’s transplant may not be successful, but I assure you there are many, MANY more intangibles that make its success almost certain. I will continue to do everything in my power to increase those odds. I will continue to turn over all worry and doubt and anything else mucky that comes up. I will daily, hourly, however many times I need to. I will remain in this moment only. In this moment, there exists unlimited potential. Today, like every single day of my son’s 2 and 1/2 year life, is a beautiful day. Today is now; it’s all there is and ever was, and it’s perfect.
A Mother’s Perspective
Sunday, March 4, 2012
https://prayers4evan.blogspot.com/2012/03/mothers-perspective.html