Earlier this month we had a film crew from Citygate Films at our home filming our day. They put together this beautiful short film to showcase the importance of Jill's House in the lives of families who have children with special needs. Grab some tissues, take a seat and enjoy our story.
Friday, May 30, 2014
Tuesday, May 27, 2014
Thursday, May 22, 2014
Oliver. Sweet Ollie is having a such a difficult time these last few weeks. We have seen this pattern of behavior before. The whimpers and whines begin late in the day before bed and slowly they begin to take over the entire day. Yesterday I had to pick him up from school because he was upset and they thought he was ill. Fortunately we had an appointment with his allergist this morning and she gave him a good looking over. All is well. Unfortunately this is just Sanfilippo rearing its ugly head and reminding me that it is going to begin impacting Oliver in a more significant way.
Anyone who meets Ollie is well aware that he has severe developmental delays. However, in my eyes, compared to Waverly, he is my healthy little boy. He can walk on his own, maneuver a playground, he comes when I call his name, feeds himself using a straw cup & spoon. He is my independent one. And I rely on his independence greatly. His ability to walk allows me to take the kids out by myself. Once he is confined to a wheelchair, our world is going to shrink even more drastically than it already is. There are no double wheelchairs. Without an extra hand, we will have to stay home.
It is so painful to watch my son cry, so upset by *something* and I am helpless to comfort him. These anxiety episodes are very common in children with Sanfilippo. Now to see if we can find something that can bring him some kind of relief. I have a call in to a few of our doctors and some other moms have provided some excellent advice.
For now I snuggle him when he allows me the honor and hope for this phase to pass.
Wednesday, May 21, 2014
I love when Waverly & Oliver find comfort in one another and connect. And I love their feet. Oliver has been having a difficult few weeks. He has been crying/whining/fussing a lot during the evening hours and now is it beginning to creep into his days. He seems to get this way when his allergies and asthma are at their worst. He was super weepy after school and all of a sudden he calmed down. When I looked over, he had climbed up next to Wavey and was rubbing his feet on hers. It was a simple gesture of affection and I think he found comfort in his big sister. Thankful for her camping presence for him tonight.
Waverly & Oliver's school acknowledged MPS Awareness Day last week in such a beautiful way. Not only did the kids wear purple, but each class helped make a purple paper chain link that stretched throughout the school. Such a simple gesture that conveyed unity and support. I loved it! At the end of the day, I hosted a Purple Lemonade Stand for the kids and their parents. Just a little show of gratitude for the support they showed our family.
Thursday, May 15, 2014
I hope you are joining us in wearing purple for MPS Awareness Day today. We struggle with this day because it's a little depressing to have to acknowledge that raising awareness is about the best we can do against Sanfilippo Syndrome. On a good day, it's the first step towards finding a cure. On others, it's just a last ditch, futile effort to try to do something instead of nothing. However you're feeling, please join us by donning some purple and hoping for a cure.
Tuesday, May 13, 2014
We had a fantastic Saturday in NYC with Waverly this past weekend. Matt is a huge Dahl fan, so for Father's Day I got him tickets to take Waverly to see "Matilda" on Broadway. My parents kept Oliver for the day, so we had a special day just with her. We spent the morning wandering Central Park and sipping coffees on a park bench. Matt & Wavey took in the matinee while I caught up with some old friends for a few hours. We then had a perfectly lovely dinner at Gramercy Tavern.
Here are a few of my favorite pictures (notice Wavey's new glasses).
Tuesday, May 6, 2014
Waverly & Oliver are both at Jill's House tonight. Matt is attending a lecture for work. I have the unique opportunity to be home alone this evening. Watson is providing excellent company however. I like to settle in on these nights and be sad. Pour a glass of wine, play some mood enhancing music, open the computer and spend time remembering the past. It's cathartic for me.
I just finished watching several home videos of the kids during younger ages. Waverly was walking independently, Oliver was kicking a ball. Sometimes I forget all that they have lost already. I think it is a coping mechanism in our brains that keep those memories at bay. I forgot that Oliver used to love kicking a ball around the house. He would always give thumbs up when he was excited. And he used to sing the final notes of the hot dog song at the end of every episode of "Mickey Mouse Clubhouse". Wavey was my talker. She would say cheese every time she saw a camera and we would try to explain it was taking video. She would just say CHEESE over and over again. She used to love to sing.
When the moment is right, I love to open up the memory trove and sit in the sadness for awhile. Laugh at the beauty of a moment, while at the same time weep over the loss.
Monday, May 5, 2014
The VERY long wait is over!! The kids' rolling shower chair has arrived and our bathroom remodel is now complete. We thought we would have to wait until July, but Friday our equipment rep called with the excellent news that our chair was ready for delivery. The chair is on wheels and can roll throughout the house. There is a tray and footplate not pictured. It can also roll over the toilet for a more supportive seat. It has chest straps to secure the kids. And the best part is it is high enough that we aren't bending over or kneeling on the tile in order to bathe them.
I started running 4 weeks ago. Actually I started walked with intermittent bouts of slow running. I am using the Couch to 5k program to help me move from not being able to run for more than a minute to eventually being able to run an entire 5k without having to walk. A simple feat for many of my runner friends, but quite an ordeal for me.
I needed to do something new in my life. I needed to feel a sense of accomplishment, lower my stress level and make some overall healthier choices. I have not fallen in love with running, however the sense of pride I feel after I complete another challenging run is something I rarely feel in my day to day life. Yesterday I ran 5 minutes straight without having to stop and it felt awesome.
There is a lovely path in our neighborhood that weaves through the woods. I love it back there. I run for Waverly & Oliver, because they can't.
We went up to PA to celebrate Easter with my family. My mom had an egg hunt for all of the grandkids and our niece made the kids an extra special gift. She found these fantastic ledge eggs and inside she stuffed a homemade pillow for each of them. (She is quite the sewer thanks to a Home Ec class at school.) The bottom photo shows Wavey in the car on the way home holding onto her pillow. Thanks, Mellie!!!