Let’s start out with a big celebratory “Yay!” For day 100! For those of you who don’t know, day 100 is an arbitrary marker that you are out of the most danger. Usually the largest complications of BMT appear before or shortly after this 100 day mark. Reactivation of viruses, graft versus host complications, other infections, usually appear by the 100 day mark. I can now eat fresh fruits and veggies, appear in public without a mask and get kisses on the mouth. My blood work has been excellent and preliminary looks at my PET scan and bone marrow biopsy show no disease. I am making baby steps to good health. The journey continues though, and there will still be obstacles along the way, but I feel confident that me, HH, kids, Dr. Superwoman and Dr. Yoda will be able to take on these obstacles together. I am so thankful for all their support along this journey and I feel most fortunate to have them and all of you in my life. Now on to today’s topic…
I don’t think there is anyway to prepare yourself or your family for this sort of crisis. You need to start out in a good place with open communication, unconditional love and financial and emotional stability. It’s like insurance, you may complain about it when you don’t need it, but when you do…. it is invaluable.
Our boys are bright. Seriously, I’m not just a bragging Mom over here. They read at an 6th grade level, math at a 4th grade level and they are in 2nd grade. They both are mature (to a point, still plenty of poop jokes over here) and take on responsibilities above their age level. Little miss is bright too, but she is only 4, so we have time on our side with her. She is above average with her knowledge, but because she is only 4, she won’t remember as much as the boys will about all of this. Though as a Mom, you wonder if you are messing your kids up for life (even without a serious illness).
All throughout this illness we have been very honest and open about my condition. Nothing is worse than the unknown and the last thing I wanted them to feel was left out of this. I don’t feel that keeping things from them would have “protected” them at all. Keeping secrets makes for an unstable environment; that was something we didn’t want.
One night, shortly after I became ill, but before diagnosis, I sat down on the floor with the boys and talked to them about all that we knew. At that point, it was nothing! But we knew that it was serious and some life altering things could happen. C looked right at me and said, “but it’s not cancer right Mommy? Because cancer is the worse….” Talk about taking your breath away.
More recently, I had an episode of abdominal pain. It broke me into a cold sweat and M had to help me back to the bedroom to lay down. HH came back and we were trying to decide whether this was going to pass or did I need to be seen for it? M was hanging around and burst into tears, “But I don’t ever want you to go back to the hospital!!” I didn’t either of course, and I cried right along with him. The pain passed and I talked to my doctor and we decided it could be worked up as an outpatient. The fear lays there on the surface. You can’t protect them from it.
Even though I hope that this is just a blip of a memory for Little Miss, I know that she is affected by it. “Mommies never die, do they Mommy?” She once asked. Holy Cannoli.
Then there is the epiphany of all conversations, mortality. A crying C came in just a few nights ago and snuggled under the covers with me. “Mommy, it seems like minutes are getting shorter, and hours are getting shorter and days are short too. Mommy, life seems so short.” If you listen real closely, you can hear my heart break. We talked over an hour. About life and God and death. He said he felt better, I hope so.
This horrific ordeal has taken so much from me. My youth, my mobility, my health, my independence and I am beginning to get a glimpse of what it is taking from my children. But this is where the insurance comes in. We laid a foundation of open conversation, unconditional love and the ability to feel whatever they need to feel whenever they need to feel it. I hope that we can continue to fill their tanks with the love they need.
So, even though I am out of danger and I have passed the 100 day mark, my son is right. Life is short. I encourage you all to love without remorse and cherish every moment and give thanks to the God that has given you those abilities. Keep us in your prayers!