There are a lot of quotes and sayings and songs about hard times. At the moment there is a song on the radio by Gary Allen that says 'Every storm runs out of rain' which is essentially the same idea as 'this too shall pass' or 'if you are going through hell, keep on going'... sayings that depending on my mood I either find quite inspirational or quite infuriating. When the babies first were born early Al and I talked a lot about 'the light at the end of the tunnel'... we would lie in bed and say 'ok it's going to be a tough 2 months but we can do it and then they'll be home and it'll all be ok.' Then we realized they were sick and the severity of their kidney condition became clear and it became 'ok, this is tough but we it'll be two years. Two tough years and then they'll be transplanted and everything will be normal and ok and all our issues will be past us.' I think one of the things we have struggled with this year in getting Max's cerebral palsy diagnosis is realizing that things will never really be normal and we are going to have ongoing medical issues with our kids. Even with Addie, we will be dealing with her hearing loss and feeding issues long term. So we have had to deal with the notion that there is no true 'light of the end of the tunnel' for our medical dramas. And so therefore there are days when the running out of rain, hang in there, this too will end kind of sayings just are not what help me the most. My favorite saying that I posted the week the babies came home from the NICU and which has become increasingly more true is: "Life is not about waiting for the storm to pass, it is about learning to dance in the rain"
I love that idea because if we consider medically fragile children to be our 'storm' then the key for us is not to wait it out but to find the joy and happiness during it, and even sometimes the blessings because of it. I was thinking about this saying tonight at dinner as we had some special dinner guests. With Hannah being here, I had invited Shannon, my best friend here and Lori, my friend who was the babies' NICU nurse for dinner. And so I sat around with these three wonderful girls and I thought about how in a way the babies medical issues had strengthened my friendship with each. The emails and phone calls and support from Hannah kept us closer and involved in each other's lives despite the distance and made drifting apart impossible when I needed her on a daily basis. And while I no doubt would have become friends with Shannon no matter what, I know our friendship is so much closer because she has been through so much with me these past couple of years. She came to the PICU every other day last December and would hang out with me like all evening and I think our friendship became so much stronger and more special during what was otherwise a pretty awful time. And then I never would have even met Lori if the babies had not been sick. And the same is true for many of my nurse friends who I love and count as close friends that I know are only in my life because of the babies being sick. I sat thinking how blessed I was by these three friendships and many others and about how much good has come from the babies being sick.
Spending time with Lori also reminded me of how much we enjoyed the babies while they were in the NICU. We loved holding them and cuddling them and spending time with them. I honestly do not look back at their 8 month NICU stay with sadness. It was my first 8 months as a mom, my first months with my precious babies. It had some awful traumatic times sprinkled throughout... But it was also a happy time and I will remember it with fondness always. Likewise for Addie's transplant. We had a genuinely fun with in California. I made wonderful friends with the coordinators on our team there. We went sight-seeing, we enjoyed the weather, we played with Addie and loved on her. We danced in the rain. And my memories of those two months will always be happy. Day to day, sure we do tube feedings and dialysis and worry about medications etcetera but mostly we just play with these adorable babies and laugh at their cuteness and soak them up. We spend our time with them smiling and laughing- they are pure joy.
So I know our medical journey is far from over. I know we will never have a normal life. I know this 'storm' has plenty of rain left in it... but I am okay with that because I am determined that I will keep dancing in it. I will continue to love and enjoy my babies and find the laughter and happiness in my time with them. I am sure more really special people will come into my life because of their medical issues and I know my true friends that I love the most like Hannah and Shannon will be there through it all and we will have a bond that not all people know. So bring on the rain, because we stopped looking for a light a long time ago and are perfectly happy now just to whip out the umbrella and keep singing and dancing in it!