My handsome little boy is turning 8 years old tomorrow. He is staying with my mom for a few days whilst I tend to Waverly's needs. This will be the first time I am not with him for his birthday, which makes me so very sad. This beautiful old soul made a dramatic entrance. And his first few weeks on the earth were a fight, but he was strong and taught me that I can be strong. He is a kind soul who is slow to warm up, but once he gets comfortable he is always ready to hold your hand. He is Mickey Mouse Clubhouse's biggest fan. I worried that I could never love another child as much as I loved Waverly....and then I met Oliver.
Monday, December 29, 2014
Sunday, December 28, 2014
We have had a very rough Christmas holiday and it is not over yet. Oliver got sick with the flu the Friday before Christmas. Two days later Waverly got it. And the following day it was Matt's turn. All 3 sick, with only me to care for them. Thankfully, my immune system kicked it into high gear and I was able to avoid getting ill. Oliver and Matt were very sick, but within a few days they were simply tired with a bad cough. Poor Waverly just couldn't fight it. We ended up in the ER twice. Her fever was 104.5 and we could not get it to go down (cool bath, outside, cold compresses, meds, etc.). And we are always worried about her aspirating on mucus and ending up with pneumonia. Along with the congestion, fever, weakness, and fussiness, she has also had epic nosebleeds that have taken over an hour to contain. On our second ER visit, they discovered she also had a terrible ear infection. Finally - 8 days later - she is fever free. She still sounds terrible. Lots of congestion to work through, but I hope she may finally be on the mend.
Here she is during our second ER visit. She was so tired and weak, she couldn't hold her head up.
My worry is that her little body won't be able to fully recover from this. I hope she can bounce back, but I fear she may be weakened by this illness long term. We have never seen her so sick and it was scary.
Wednesday, December 24, 2014
A few weeks ago Waverly & Oliver's principal called to let us know that he had nominated us for United's Fantasy Flight and we got a spot. We had to be at Dulles airport early on a Saturday morning for a flight to the North Pole.
It was an amazing experience. United offers this special flight once a year around Christmas. Children in hospice or those with a terminal illness are flown to the North Pole (i.e. a terminal decorated to look like the North Pole) to meet Santa. The plane was totally decorated and the flight attendants came around with tons of candy for the kids. There were wearing costumes and sang. And for about 20 minutes we flew around over DC (ahem or using magic elf dust to the NP).
Once we landed we were greeted by tons of people in costumes. There was lots of food, crafts, games. And of course a visit to Santa where the kids were given a gigantic bag full of toys. The kids had a fantastic time. And Matt & I were certainly overwhelmed by the love and support shown to our family and others within our community. What a special day it was for us.
Thanks to Mr C and his wife for making this day possible!!
Friday, December 5, 2014
This week is Inclusive Schools Weeks and last year I started a week long celebration of inclusion at the kids' elementary school. I am the Special Education rep on the PTA and quite honestly I had no idea how to fill that role. I did a little research and found out about this national program to celebrate and promote inclusion. I thought this was the perfect event for our school. Thankfully we have supportive administrators and teachers who helped make the week possible.
Each day the kids are wearing a color to bring awareness to a particular diagnosis. Blue for Angelman Syndrome & Down Syndrome. Green for Cerebral Palsy. Purple for Sanfilippo Syndrome. Black & White for rare diseases. And Rainbow colors for the autistic spectrum. Each day I have seen almost every child and staff member in the corresponding color. It has been a beautiful sight to see.
Wearing a color is a small step, but I am hopeful that families are having conversations and teachers are speaking with their students about why this week is important for everyone. And I hope that the staff is encouraged to make further steps to promote inclusion within their classrooms. It benefits ALL students.
"The vision is, first, that the school will be a community, a place full of adults and youngsters who care about, look after, and root for one another and who work together for the good of the whole, in times of need and times of celebrations. Every member of a community holds some responsibility for the welfare of every other and for the welfare of the community as a whole."