Have you ever thought about all you would like to accomplish in your lifetime? This thought has come to my mind so much these past few months. I often felt bad about how I lived life as if there was no tomorrow. The guilt flooded me especially as my body would break down. I would blame myself thinking, if only I would’ve just took things much slower, waited or did things differently. Looking back I now can say I wouldn’t change the decisions I made, with all that I was able to do. I have stepped back from basically everything I was doing. Not that I had a choice in the matter. Here I had a raging infection ready to take over my little body. In this post I think it’s time to show you exactly what it has done to me physically and mentally. I’ve painted the picture in past blogs but I think by showing the wounds as they heal; you can see how blessed I am to be still be here. I think it’s one thing to know but if you can see visually what I’ve endured you can take another deep look into my world and my perspective.
I’m real good about picking myself back up and moving on. That is probably one of my greatest strengths. This time around I have to look at every little thing as a step forward in the right direction. Even though everything isn’t certain. I had battled a long time with open wounds which was a constant reminder how slow the healing process was for me. This would be the first time I could see how vulnerable and acceptable I really was. I would be so irritated at the lectures my mom would tell me about wearing a mask everywhere I go and now the doctors were telling me the same thing.
Here I was encouraged by my doctors to live a normal life post transplant. First couple months avoid large crowds, take the regimen of pills, labs and regular doctor appointments. Since I already learned this ritual being on dialysis and doing home treatments it wasn’t hard. I had more energy and felt great. Every step I called the doctors. Can I start volunteering at my son’s school? Can I go to church? Can I eat this? Can I do this? Diligently I called my social worker to confirm the guidelines and timelines given to me in my transplant handy book.
I was ready to be a role model transplant patient especially being able to go back to volunteer as a Donate Life Ambassador. I now can share that I finally received my transplant and share how it was giving me a better quality of life. Physically you would see that too. I no longer had the off colored skin and shifting water retention. I’ve shared in earlier post how 2010 was a year full of blessing yet the most challenging as it would be the year we would lose many loved ones. These challenges brought an even more urgency to live. To see how unexpected a loved one would be with you one day and then gone the next. So I took each day and did all that I could do with it. I really felt everyday was a gift and the true way to live is to give back. It’s what I believe is our purpose. Not to live self-centered lives but to give what you can. Which is a challenge when you have to put your health first.
I know I never compromised this because I found new ways to do the things I loved. I no longer went into the classrooms but I learned to volunteer behind the scenes. In my heart I didn’t want my boys and the kids to lack the fun school experiences tight budgets couldn’t provide. I went back to Celebrate Recovery and started attending meetings masked up than gradually going into the leadership roles as health permitted. I knew how important this ministry was for me to keep growing spiritually and be accountable for healing physically and mentally. I did the same with youth group and it was natural since this is where I took my boys and other kids. At the same time fulfill the passion of being there as people were there for me in my troubled youth days. I furthered my education and dropped classes when I had to and eventually just had to stop. When it came to going back to work that literally dropped into my hands and timing aloud that. So I can see now that I did do my best.
Never in my life did I have to depend on government assistance except for affordable housing when we first moved out. Even as teenage parents me and my husband graduated, pursued degrees/trades, and kept finding ways to better ourselves. This carried onto my adult life and I knew the time span I had with SSI disability post transplant. I was prepared to make the appropriate transition in returning to the workforce.
With life nothing is promised. Even as careful as I was. With the eagerness of the life I was living. Full of promise. It didn’t change the fact how acceptable I was. If only we had changed both tires would we have had that blow out on hwy 5. If we just didn’t take that trip, I wouldn’t have gotten so sick.
I already told myself “no should have.. Would have.. Could have’s”. Why wasting valuable energy on regretting. So I’m moving forward but I want to be wise. The thing is I can’t change who I am. The truth is I was already very sick to begin with. Could I have prevented what happened? I really don’t know. If I didn’t catch valley fever on the side of the road maybe I could have caught some other weird fungus in the safety of my house. Really am I ever safe? Will I ever be safe? Will there ever be a perfect time to live?
Now the only way I see it is only God knows. I have prayed every step of each decision to the point I questioned myself. I questioned my faith. I had to look deep down if I was growing or was I at a standstill. Yesterday at church the Pastor mentioned our paths our like a zig zag. God can give you a vision and sometimes it takes time for it to come to fruition. I have thought through my years in faith I trusted each step of the way. Now this season of uncertainty and suffering I couldn’t help but ask God why I had to go through this.
A couple of weeks ago I was able to watch the screening of the, Power of Two. A documentary about twin sisters who defied the odds of cystic fibrosis and both received a double lung transplants. Which would help them continue to beat all the odds against them. I first ran into the movie trailer several years back and it touched my heart. I remember I started to follow the progress of this documentary via social media. Not too much later one of the Stenzel twins, Isa would be speaking at a Donate Life ambassador meeting. I got to meet her and she signed my book.
I was recovering well from the first wave of the infection. I understood first hand how valuable each breath felt as the infection first wreaked havoc on my lungs. As I read their book I could understand how hard it is to catch a breath with the pneumonia that I had but to think about a lifetime of this struggle was something that deeply impacted me. It made my health trial seem so minimal compared to a lifetime of hospitalization, treatments and uncertainty. Here I had a pretty much normal childhood even though I was a sick kid; I wasn’t in and out of the hospital like them. I slowly read the book. When the infection came back in my bones and soft tissues; I would read this book and finally finish it.
This couldn’t have come at the right time. Reading all that they accomplished and even competing in the transplant games gave me a vision that I could do this too. Even though I was in the worse shape ever here they were living examples that it was possible. A couple of weeks ago I had the opportunity to attend the screening of the Power of Two in Sacramento. I was in tears and to watch a following reading of the book from the other Stenzil twin Ana. Just brought a deeper appreciation for their story. At the meet and greet I got to meet Ana. I told her how I wanted to compete or at least attend the games. She gave me information and totally encouraged me to go.
I ended up wroting the twins not too long after and said I want to go and I want to try to compete. Next thing you know I started to look at treadmills. I knew I couldn’t train outside quite yet so this would be my way. We started to look at used treadmills and Daniel had the idea to ask on Facebook if anyone was happening to get rid of one. Soon after my dear friend and the person who has been with me through this whole recovery, Pastor Neva actually happened to be getting rid of her treadmill. It all fell into place really fast and here the vision started to become more real.
I would gradually increase my pace, the incline and the time. I gathered my family and finally told them let’s go to the transplant games. The question would be how? Ana emailed all the details about the grants offered but I would have to raise money for my family to go. This past weekend I put out a fundraiser page. Within two days I had one registration covered which I’ll be submitting today. It’s exciting and still unclear how ready I’ll be but it’s worth a try.
I have this vision of me and my family attending. We had the toughest year ever. As this infection left so much damage in my body that only time can tell what will happen. This is exactly what is making me feel is all the reason to go. As I am inspired by the twins story. I want to do this for God, my donor, my family and for me.
As I reflect on the past of how I live, I have no regrets. I know God created me just this way. I’m not going to feel bad for that anymore. This is the reality of my life. I know that “nobody” isn’t promised tomorrow. So I will choose to live life fully. Love, like, dislike, believe, not believe, be happy, be sad etc.. all fully. I must fight and learn through it every step of the way. Yes after all I’ve been through it’s exactly why.
How will you choose to live your life?