We left the baby in the front room to play with her “Santa” gifts:
while the big kids opened their stockings:
This was extra fun since we did booby trap the house last night, so the kids had to “mission impossible” themselves through the traps to get from their beds, through the hallway of dressup clothes, to the Christmas tree. It was so fun! I got some of Mary’s attempt on video:
The baby just kept working her way through all her toys, mostly by eating them:
While she drooled, the big kids started opening some presents:
The baby got a tiny cabbage patch dressed as an elf, and she just kissed it over and over!
It was so sweet!
It was wild to watch her become such a big girl with all her big girl toys – she will be nine months next week, and she’s growing like crazy now that she’s back on oxygen full time!
She has been panting pretty heavily for a week now, but she holds her color most of the time when we keep the air turned up, so we are just holding our breath for Cincinnati.
We got two calls that two of the doctors out of her team of four do not think she will survive the next surgeries.
We got another call that there is another surgery she has to have while we are there, so she will have two surgeries one day (doctors taking turns while she is already under anesthetic), and another surgery the next day.
In the meantime, we have these small moments that feel seem like tiny wins but are huge wins for us, where everything feels so very normal – despite the oxygen tubing that is still her favorite comfort object.
This is our life, though, the extra equipment… once the kids are down, I have to make our rounds to be sure everyone has what they need and that it’s all in the right place.
We have to double check the concentrator to be sure it is set right for the baby’s night:
Kirk has his braces and glasses he so often loses:
and we have to be sure Mary’s batteries are charging for her ears.
This is our life now, not counting late night potty dramas with preschoolers.
Kirk was so worn out at the end of the day that he almost couldn’t stand up! Here is life with cerebral palsy when the days are long and the house shoes still too new… he is so funny! But he is also persistent and determined, and so very amazing.
We made it almost all the way through our day to get our “two” – which means two days with no one throwing a screaming baby fit – but lost it at the very end of the day after everyone was over-stimulated and preschoolers did not want to go to bed. They were so tired! They are doing so much better now, with Barrett usually able to take deep breaths and calm down and Anber’s tantrums coming less often and ending more quickly. I am proud of them, and not looking forward to another round of toddlerhood with this baby who isn’t a baby anymore!
The big kids held it together, and worked hard to help clean up and find places for their new toys. We had quite the mess, and they even loaded up cardboard for recycling! Nathan played one of their new games with them, while I made popcorn and passed out juice. We watched a Christmas movie, and giggled through our prayers. We try to be reverent, but it was a night of such happiness after such an exciting day!
Once the kids were all down, and the turkey was put away, and the soup made from its bones and ready for tomorrow, Nathan and I curled up for date night with cheese and crackers and an apple, watching the Joan of Arc special from BYUtv website. I really, really loved it, and will never forget going to that place while I was in France. It was a lovely Christmas present, to have an evening with the man I love and adore. Many thanks to our ward, the Vivians, and the Hydes for the “Santa” gifts and many smiles we saw today.
Christmas again leaves me both humbled and challenged, feeling loved and hungry to love better, content and swollen with gratitude.
“She was truthful when lying was the common speech of men; she was honest when honest was become a lost virtue; she was a keeper of promises when the keeping of a promise was expected of no one; … she was full of pity when a merciless cruelty was the rule; she was steadfast when stability was unknown, and honorable in an age which had forgotten what honor was; she was a rock of convictions in a time when men believed in nothing and scoffed at all things; she was unfailingly true in an age that was false to the core; … she was of a dauntless courage when hope and courage had perished in the hearts of her nation…”
~ Mark Twain