This Saturday will be three years to the day that we were told that our boy had Cardiomyopathy and would need a transplant. It has and continues to be a journey filled with fear, faith, joy, tears, and so many more emotions. We have seen God do incredible things. The fact that Noah is still stable, doing well, and has not had a transplant is a huge gift that we don’t ever want to take for granted. I know people are often confused by that statement given that all of us prayed for a heart transplant for so long. Transplant is a wonderful life saving option but it is only an option for so long. Your body will keep trying to reject the new heart because it recognizes that it is a foreign object and not your own. The lifespan of a heart varies and it is common to need multiple heart transplants. The anti-rejection meds they give you wreck havoc on your body causing many more diseases and possibilities for other transplants like kidney, and liver. There are multiple doctor appointments and hospital stays. Don’t misunderstand me we will endure all of this if it means our son gets a chance to live. However we are so grateful that God has given him more time. More time to be a kid. More time to build memories and travel as a family. Please pray with us that God would continue to keep Noah stable. We don’t know how long he can maintain being stable. We do know and understand however that we are not in control. God can still choose to heal his heart, he can choose to take this away completely, he can also choose to make him active on the transplant list again, or even bring him home. We are not in control so we trust the one that is. Noah is so excited to go to camp this year. Something he has missed out on for three years. After camp though he will have a heart Cath that will check the pressures in his heart. This is an important test. If his numbers are good he will remain inactive. If they have changed than he will need to be put back on the list and face the possibility of transplant. Being put back on the list will put an end to our vacations and will mean we are bound to our phones, holding our breathe when every call comes in. It has been incredible to have had a break from that for the last 9 months.
While Noah has remained stable, my disease has unfortunately kept progressing. We recently got the opportunity to go back east with my family for a fun filled educational trip. We visited DC, Williamsburg, and the boys visited NY. This trip was wonderful being with my family and I wouldn't trade it for the world, I was immensely grateful for it but it was hard emotionally. My disease was smack in my face. I spent more time in my wheel chair than I ever had, I struggled to get into shuttles, subways, and bathrooms without assistance. I was unable to participate in some things because of stairs etc. It is a daily struggle for me both physically and mentally. I absolutely HATE this disease. I HATE that me and my son share it. I HATE that he may one day have the same physical struggles as me. I want more than anything to feel strong and not have to rely on anyone or anything for that matter. I know that statement may come across harsh but when you struggle to just walk, breathe, and swallow normally it will makes sense. I HATE seeing it continue to progress and I often worry about what else I will have to give up. I spend my moments wishing for the days when walking was so much easier and feeling sympathy for those who can’t walk at all. Trying not to feel sorry for myself but at the same time allowing myself to grieve the things that I’am losing. All the while Trusting and knowing that God is doing his work and that it’s all so that the works of God can be displayed. It’s a daily surrender for me.
When I sit and think about this journey over the last 3 or four years and the many blessings that have come with the hard, I truly am grateful. Grateful for the opportunities to see God at work, for the strangers we have met who are now dear friends, for the answered prayers, and for all of you who have walked with us so faithfully. Thank you so very much. We ask for your continued prayers as we seek to live a life that Glorifies the Lord.
