Thursday, March 6, 2014
Matt and I were interviewed by Jill's House as part of their Sponsor a Child Campaign. They put together this lovely video to explain the importance of a place like Jill's House for families who have children with special needs. I especially love the footage of the Waverly & Oliver at JH. You can view the video on You Tube HERE.
If you feel so lead, please consider making a donation to this worthwhile organization. It has made a huge difference for our family and many within our community. You gave find more information about donating at www.jillshouse.org
Friday, February 28, 2014
They installed our glass shower doors this week and the kids' bathroom is complete. It looks beautiful!! Thank you Ryan Reph Remodeling.
Now we just need their rolling shower chair to arrive. We have one on order, however the FDA isn't allowing the import of the chair until at least July. We are trying to get an exemption, although that doesn't seem likely.
Today is World Rare Disease Day!!!
In the US, any disease affecting fewer than 200,000 people is considered rare. This definition comes from the Orphan Drug Act of 1983. There are nearly 7000 rare diseases affecting nearly 30 million Americans. Besides dealing with their specific medical problems, people with rare diseases struggle to get a proper diagnosis, find information, and get treatment. The rarity of their conditions make medical research more difficult.
Alone we are rare. Together we are strong.
Tuesday, February 25, 2014
A friend of mine who had her first child last year mentioned she felt like she was losing herself in motherhood. Her identity became so wrapped up in being a mom, she was neglecting the other parts of herself. I have heard this sentiment before, but I must finally be ready to understand. I get it. Totally and completely.
Since the kids were diagnosed life has changed dramatically for our family. Matt changed his career, we moved to the DC area, and I threw myself into caring for Waverly & Oliver. However in the process of caring for them, I have neglected me. I used to feel selfish for feeling this way, but I am realizing that if I care for myself I am better prepared to care for the kids.
So begins my journey of refocusing, not to the detriment of the kids, but to the betterment of me. I need to take care of my body - eat better and exercise - to be healthy and strong. I need to take a class or find a hobby, taking some time each week to learn and grow. The most difficult challenge will be developing friendships and connections. I often feel so lonely, connecting with people via phone calls, texts and Facebook. I need local relationships.
I am beginning to realize that when Waverly & Oliver pass away, I need to have some support and structure built into my life to carry me through.
*ISO compassionate women who will accept a loyal friend with lots of baggage and a very complicated story*
Monday, February 24, 2014
It's finished!!! And it is beautiful. We are over the moon excited with the kids' new accessible bathroom. We installed a 36" pocket door to save space and easily navigate a rolling shower chair into the bathroom, grab bars by the toilet and in the shower, zero lip entry into the tiled shower to roll the kids right in for bathing. The custom glass doors will installed within the next week or 2 to finish the project.
I cannot thank our contractors - Ryan Reph Remodeling - enough for creating such a perfect space.
Thursday, February 6, 2014
I'm not apologizing for my kids anymore.
Oliver had his 7 year appointment today with our pediatrician. I adore her, but the nurses can be iffy. Today's nurse obviously hadn't read the huge note on the front of his chart briefly explaining Sanfilippo Syndrome. She was irritated that Oliver would not remain still for blood pressure and pulse - I warned her. And she got a bit huffy when Oliver was unable to stand on the scale for more than a few seconds. Typically I would apologize for his behavior and let the person know developmentally he is only 18-24 months old. As I started to utter these words once again I realized that there is no need to begin my sentence with "I'm sorry" or "I apologize". My children have done nothing wrong.
My life is complicated enough. To move through it worried that Waverly's wheelchair may take up too much space, Oliver may get a bit noisy, people may judge me as a terrible mother for allowing 'Mickey Mouse Clubhouse' to play on an endless loop. I have to let it go. No more "I'm sorry". I have to move away from those words. Leave them behind.
Friday, January 31, 2014
I am currently staring at three pieces of medical equipment in our family room. There is another in our van, one at school, two in our guest room and four in bedrooms. There is a part of me that is so grateful for these items. We are incredibly fortunate to have insurance that recognizes the benefit of standers and walkers, wheelchairs and Sleep Safe beds. I am thankful we are in the midst of a bathroom remodel so the kids can bathe safely in a rolling shower chair. And I love having a wheelchair van that keeps the kids safe and secure, while saving my back from constant lifting.
This has been an exhausting month both physically and emotionally. So much change occurring in such a short amount of time. As the changes arrive and we adjust to our new normal (again), reality settles in and a new phase arrives.
Wednesday, January 29, 2014
It took so much time and energy to get this piece of equipment, but it has finally arrived. Yesterday we were able to pick up Waverly's new wheelchair. It is a Quickie Iris Tilt. You may not be able to tell from this picture, but some of the frame is purple, while the rest is black and gray. That huge padded seat is memory foam, making for a plush ride. It sits straight up as shown and can also tilt back to al most laying position for when/if she falls asleep. There is a great tray so she can play with toys and books easily as she rolls around.
It is most definitely not going to be confused as a pediatric stroller. We have entered a new phase. There is no hiding Sanfilippo Syndrome with this ride. However, it is going to serve her well. It allows us the freedom to add on items as she continues to decline that will accommodate the changes.
Once again life looks different for our family. We are adapting to new equipment. Adjusting to our new normal.
Now to find the perfect fashionable bag for her chair...
Another big change for us is a complete bathroom remodel for the kids. Right now their bathroom is down to the studs and the concrete floor is all busted up. Gone is this:
In its place will be a large walk in (roll in) curbless tiled shower with glass doors. The toilet will be moved, vanity moved, new flooring, new lighting and fixtures. We are also installing a pocket door to save space and allow our rolling shower chair to maneuver more easily. It is going to be gorgeous!! And even better than that it is going to be much more functional for the kids' needs. We will not have to lift the kids into and out of a bathtub anymore. Hooray for another back saving update!!
Typically January is a slow month. The winter blue set in after the holidays and we count down the days until spring arrives. Not this year. We have been so incredibly busy, which is made obvious by my lack of blog entries recently.
In big news our new handicap accessible van was delivered a few weeks ago. The bottom picture gives the clearest idea of how the van works. The ramp (folded up at the back of the van) unfolds from the trunk. A wheelchair them rolls up the ramp and sits between the 2 captain chairs in what is typically the middle row of a minivan. A second wheelchair can sit behind it. Wavey can then ride in her wheelchair, eliminating the back breaking transfer into and out of her wheelchair. Hooray!! (Her new wheelchair wasn't here in time, so Wavey is sitting in the regular seat still.)
I never thought I would be so excited about a wheelchair accessible vehicle, but I am beyond thrilled. This is a life change for our family.
Friday, January 10, 2014
Oliver is 7 years old. Time is flying by much too quickly. We had a little birthday party for him over the holidays with my family. He loves cake and ice cream, so we opted for a delicious ice cream cake from Carvel. We say "Happy Birthday" - twice - because Waverly loves that song so much. Oliver just wanted to eat.
My sweet boy is changing. I am often so focused on Waverly's changes because they are new and unknown. With Oliver we are aware of what will happen next, should he follow his sister's trajectory. However every so often I see the differences. He is still using a spoon to eat, but he is becoming less effective. He doesn't dig the spoon in anymore, so most of the time he is bringing it empty to his mouth. We give him time in order to maintain the skill and the motor coordination, but then we take over so he can actually get some food. He is crawling over to furniture now in order to pull himself up to a standing position. And his legs are growing increasingly stiff, so his walking is a bit more uncoordinated.
He has the sweetest of spirits. Waverly has always been social and quick to warm up to any new environment. She longs for personal contact and lights up well people speak to her. Oliver is much more subdued. He is our home body. Each time we walk through our front door he squeals and runs around, happy to be home. He is happiest watching 'Mickey Mouse Clubhouse" all day long while running around the house holding his favorite Mickey Mouse footballs. Life is simple for him. Eating bring ultimate pleasure and we try to allow him his favorites as often as possible given he will soon no longer be able to eat by mouth. He is sometimes misunderstood. He doesn't give great eye contact or interact with his peers. Yet he is quick to hold my hand, loves to snuggle on the couch, and quickly falls asleep with a head scratch and back rub. I love him completely.
Happy 7th Birthday, Oliver!!
Wednesday, January 1, 2014
I took Waverly to see "Frozen". It is the first movie we have seen in a theatre together for about 2 years. She loved it!! She sat quietly in her wheelchair the entire time. She was a bit startled by the volume at the beginning, but grew more comfortable once the movie started. She cracked up - usually at the totally inappropriate times when the characters were in danger or there was a heartfelt moment on the screen. She has always done that. It was a great few hours of normalcy and mother/daughter bonding. We have to do it again soon.
Monday, December 30, 2013
Christmas has always been a difficult time for me. I tend to be overly emotional about it and focus on the *what ifs*. The past few years we have made a point to go on vacation over the holidays. It's a chance to escape and make memories. We weren't able to do that this year. So instead of trying to force traditional Christmas on the kids, we opted to do our own thing.
Matt had to work Christmas Eve day, so the kids met him downtown after work. We walked over to the White House to see the National Christmas Tree. It was freezing cold and so windy, so it was a quick walk. Then we went to Founding Farmers - one of our favorite restaurants - for dinner. We had a great table by the window in the corner. Perfect spot for Waverly and Oliver loved all of the food.
Christmas morning was casual. I made breakfast and had a few up wrapped toys and books in a basket for the kids to discover. No wrapping paper or bows, no Santa or stockings. I used to get so depressed that Waverly & Oliver didn't show excitement for those things. This year I adapted to them. And it was so much easier. Lesson learned.
We decided it was time and bought a wheelchair accessible van last month. It has finished being converted and now we are just waiting on delivery. Hopefully it will be here within the next 2 weeks. My back is achy from lifting Waverly in and out of our van. And especially lifting her wheelchair in and out of the back of the van. We just ordered her a new wheelchair which is much bulkier and weighs almost 100 lbs. It will be a wonderfully comfortable fit for Wavey, but I knew I could no longer lift it.
It is a huge expense, but it was time. We needed a second car anyway. Our new van will accommodate 2 wheelchairs. For now, Oliver can sit in a seat with Waverly in her wheelchair beside him.
I am strangely excited for the new van's arrival. My back is already looking forward to limited lifting. I will take pictures of the kids inside once it *finally* arrives.
Sunday, December 29, 2013
My sweet little boy is turning 7 years old tomorrow. I cannot believe how quickly time is flying by. My sister gave Oliver the football you see above. He got the same exact one in 2008, when we visited Disney World after the kids were diagnosed. He sleeps with it every night. A dear friend got us a spare a few years ago, but we lost it a few months ago. Thanks to eBay and a savvy sister, he now has a back up once again. He was thrilled to see a favorite familiar toy under the wrapping paper. Most kids would be devastated to see a toy they already own, but my precious boy was all smiles.
Wednesday, December 18, 2013
It is that time of year. Time to clean out the kids' rooms and donate toys. We don't buy many toys any more, so this is simply an act of going through old ones and deciding if we are able to part with them. Like most parents, letting go of the memories associated with specific items is the difficult part. For our family, there is an additional layer. Most of the toys were Oliver's - cars, fire trucks and race tracks. I am sure some little boys and girls will be very excited to receive these toys. Still it is another loss. Another phase of his childhood that has passed. Feeling very sentimental. And holding on to his Handy Manny tool set and Thomas the Tank Engines for a little while longer.
Friday, December 13, 2013
I went to the American Girl store with a friend last week. In the past, this store has filled me with anxiety and sorrow. I know that it sounds insane to equate Waverly's childhood with a doll, but the store represents a missed phase. It was a place I thought we would go together and let her pick out a doll. Last December I wandered in and decided to buy her a doll. I know she won't play with it, but I wanted to her to have one. I think it looks just like her. On my most recent trip, I spotted the wheelchair. I knew she had to have it. Just another addition to allow her doll to resemble Wavey even more. I have it displayed in Wavey's room and I think it looks fantastic.