We have had a crazy nonstop weekend. Started first thing Friday and didn’t stop until about 10 pm last night when we got home and rushed the kids off to bed for school. It was all good things. Parties, shows, friends, etc.
Even made two trips to the cemetery to visit Hannah to redecorate her area. Out with the Valentine’s stuff, in with Spring.
And then last night after everyone went to sleep, I just broke down.
Guilt. So much guilt. Guilt because we would have never been able to have such a fast-paced weekend with Hannah’s needs. Guilt because her life supporting medical equipment doesn’t restrain our activities anymore.
Guilt because it was an easy and jam-packed weekend.
I don’t feel guilty because it was fun. I feel guilty because I know it wouldn’t have happened if things were different. And then the guilt turns to sadness because in my heart I would gladly give up these fun, pick-up-and-go days, just to be home with her.
I didn’t like the lifestyle that Gaucher’s disease caused us to live in, especially her last year. But I LOVED my life with Hannah to that last minute I got to hold her when she passed away. I would gladly take back that lifestyle just to have her back in my life.
Then it hit me last night. The price of freedom from that medically-constrained life was having to lose Hannah.
Can I turn this freedom in for a refund and get my Hannah back?!
Carrie—you should realize that you really should not have any regrets. You gave Hannah the best care and love that she needed. She was one lucky girl to have you all as family. You are all still living and deserve to celebrate your lives with happiness and good times. I am sure Hannah would want it that way. Her spirit is there right along with you all and she is probably so happy to see you all having such fun. I know that you would love to have her back. It is so unfair. Just be happy and create those great memories for your other children. You are a wonderful person, a loving Mom and great wife. You also have the talent to write and you have a great voice for your beliefs. Love you!
Carrie- I’m a 27 year old with advanced Cystic Fibrosis. I live a rich, productive and independent life only because of heavy reliance on an incredibly supportive and loving family. There’s no question that they love me and they WANT to be helping me as much as possible, but I’ve often felt exactly what you’re describing. I imagine how much easier their life would be without the constraints I present- the heavy medical devices I have to travel with; my frequent and time-consuming breathing/clearance treatments which take 3-4 hours a day and present regular disruptions; the activities my damaged lungs no longer allow me to do; my increasingly smaller reserve of energy. The list is endless without even mentioning the financial burdens. I so appreciate you acknowledging this head-on because whether or not you write about it or say it out loud, those of us actually presenting the burden very much feel and internalize it. While liberating no doubt, it’s comforting to hear that freedom is not the end all be all we sometimes make it out to be (especially those feeling anything but “free”). Thanks for a beautiful post. Emily
Aw, Carrie. :'( *Hugs* You are always doing your best. Always. When Hannah was here, you managed the impossible task of being the best possible mom to 3 kids. Now, you’re the best mom to 2 kids AND still to Hannah, as you focus on LMHF. That’s mind boggling and simply amazing. IF that’s not love, I don’t know what is. And, Hannah loved A & E so darn much! I don’t think she begrudged any time, past or present, that you spend with them. But not having her there to spend time with all of you is heartbreaking. Grief is the piper you have to pay–even if you got a minuscule respite this weekend–sometimes you pay double.