This sweet story touched my heart. The author takes the reader on a journey through the small but profound life of her daughter who has been diagnosed with metachromatic leukodystrophy. It drastically shortens her life. But she uses the phrase, "Adding life to her days when we can't add days to her life". And that's exactly what they did. They tried to live every moment to the fullest. Not by doing big things on any bucket list, but by just enjoying each and every moment. They had a wonderful angel helper who set the greatest example of this:
"She's amazed that we always seem to be chasing our tails, complaining when we have to be patient and cursing long lines. Therese never feels she's wasting her time. whatever she does, she gives it her full attention. And she feels that every moment of her life has value...
"It's a well-known fact that in hospitals you often have to wait... and for a long time. I'm soon muttering, getting irritable, and pacing up and down. Therese, on the other hand, sees this time spent in the hospital as an opportunity to meet interesting people, experience a new environment, and slow the frantic pace of her everyday life. For her, waiting isn't empty time; it's a state in its own right and can itself be a source of riches. Therese doesn't put her life on hold when she has to wait around, she carries on living, just at a different pace."
I find it brave when someone shares their story. I would imagine it's healing. I'm very glad to have read this and added it to my mental library. I loved reading about the many who stepped in to help take care of her little family when they were in such desperate need. It made me happy to see how loved they were. She tells how her little boy (the oldest) was so brave and older than his years. She tells how her husband stayed by her side and how they fought the fight, together. She tells of her newest daughter who also has the disease (it's a mix of bad genes, she says, from both her and her husband). I did find out through the magic of the internet that her other little daughter died last year. She had received a bone marrow transplant in hopes of at the very least lengthening her life. I don't know her story or how long she lived but I can't imagine facing that with not one but two of my children. She knew when she was pregnant that there was a significant chance her baby would have the disease and they chose to have the baby, anyway. No regrets. I admire them for that.
This was a great story. I highly recommend reading it.
