My daughter was born on April 29th and has an extremely rare chromosome disorder. She was flown from our hospital to the closest Children’s Hospital when she was 24 hours old, and we have been here ever since. We are *hoping* to be discharged Thursday, which will be Day 40 of her life/hospital stay.

If you haven’t heard of Beads of Courage, it’s a really beautiful program, and you can easily look up the website if you want to know more. Basically children/babies receive beads for different things they must endure in hospital. It’s a visual history of their illness or condition.

The black ones are for pokes (she has over 100 so far) and the yellow are for nights in the hospital. Pink for days on respiratory support, light green are for tests, rainbows are for every time occupational therapy or physio visited her. The “bumpy” ones are for challenging days (like the one where she had to go to MRI twice and neither was successful, she HATED the restraining wrap they put infants in). Her string is over 6 feet long, and she will continue to collect beads because she has a laundry list of specialists and follow-up procedures ahead.

I think they are beautiful and desperately sad all at once. She’s not the baby I anticipated having, but I think she’s the baby that will make me a better person. She has already forced me to summon strength and bravery I never knew I had.

Even though I’m excited to go home, I have a lot of fear because she’s going to need oxygen for a while yet, and a feeding tube, which I have to change and put up her nose every 2 weeks. I hope I can be everything she needs me to be.