Friday, March 20, 2015

7 Years

Today is the anniversary of Waverly's diagnosis of Sanfilippo Syndrome. 

Seven years. Seven. Years.

I cannot believe so much time has passed since we were handed a few printouts and left with very little hope. Yet time is a funny thing and trying to remember life without the specter of Sanfilippo is growing more difficult. I struggle to remember the levity of living without the weight of a terminal diagnosis over our family. 

Returning in my mind to that day sitting at CHoP, I cannot believe the way a brief meeting with doctors can be so transformative. I walked into the room as one person and left very different. It is so clear in my mind's eye sitting in the waiting room with Matt & Waverly for the test results. Following the resident into an exam room and looking out the windows. Seeing the neurologist came in with file in hand and a solemn look on his face. And then it happened.

Your child is dying. 
No cure. 
No treatment. 
Her little brother may also have it.

Waverly was off to the side playing with the resident, who did a beautiful job keeping Wavey entertained so we could absorb the news. Smiles and giggles. Tears in the resident's eyes.

I remember wanting to scream. But tears came instead in waves of breaking down and then pulling myself together. Matt looked stunned.

They wanted to take a skin biopsy to determine what type she had. She still has a tiny perfect circle of a scar on her upper arm. A memento of that day.

Driving home and her little voice started singing "If You're Happy And You Know It" from the backseat. Blissfully ignorant of the horrible hand she was dealt.

In that moment I thought life was going to be horrible. That pain and suffering would dominate our children's short lives. And while they have had a difficult road with much more pain ahead, they are happy joyful kids. 

Seven years is a long time for perspectives to shift. Waverly may no longer speak. She cannot eat. She can walk very short distances with full support, but is otherwise confined to a wheelchair. She is incontinent and needs help with all aspects of her care. However when she smiles she lights up a room. Her giggles are contagious. She will always reach for your hand and look deep into your eyes.

We find the little joys and delight in them.

Sanfilippo Syndrome is an awful disease that is slowly taking my children away. 7 years ago, I was capable of only focusing in on their early death. All of these years later I am able to focus on the moment. The waves of sadness come in slower intervals now. Although the depth of love I have for Waverly & Oliver is more substantial, so when the waves come they knock me around a bit more. I am stronger, more compassionate, more tolerant, more patient.

I would take Sanfilippo Syndrome away from them if I could. I would love to know what fantastic little beings they would be without the trappings of the disease. I wish they didn't have to experience daily pain and frustration. I grieve thinking about the way things should be. But I have learned to embrace the moment, celebrate the small things and be thankful for today. I am honored to be their mommy. My friends who no longer have their children beside them remind me to relish every second I am given with Wavey & Ollie.

Wednesday, February 11, 2015

Poem For Waverly

A dear friend wrote this poem about Waverly and shared it with me recently. I love it and I hope you do as well.
******************************************************************

I may never see the color purple again without thinking of Waverly
  a violet’s fragile petal
a sunset, come too soon.

In purple,
  I see thick chestnut pigtails
        momentary smiles
     dark eyes that speak
               and grace.

Perseverance
Silent songs
One foot in front of the other.

Waverly Post Flu

As I mentioned in a previous post, the latter half of December and most of January were dominated by Waverly's health. She had the flu and then a subsequent ear infection. She ended up developing aplastic anemia (basically her body stopped the production of blood cells). It took some additional medications and an iron supplement to get her back on track, but she is finally looking more like herself. She seems happier and her color looks great.

Her illness took a toll on her body. She is much weaker and her walking/standing has suffered. Her aide at school was a bit shocked when seeing her after such a long break. I have often heard that as kids with Sanfilippo get older, each illness can take them back a few steps. Boy were they right. 

We are quickly facing the fact that we are going to need some kind of track system or hoist lift in order to move her around the home. My back can certainly not continue to fully support her as her strength diminishes. I knew we would one day get to this point, but it does not make it any easier.

Disney World 2015

The McNeil family went to Disney World in January and we had a fabulous time. Here are a few of my favorite pictures from our vacation.

The family in teacups - Oliver only likes rides where he can see the outside

Oliver meeting Mickey & Minnie Mouse

Another spin on the teacups

Waverly flashing a smile on our first night of vacation

Oliver also liked the Tomorrowland Speedway

Wavey's Cinderella inspired mouse ears

Waiting for the parade to begin

Oliver was entranced by the Electric Parade

Waverly meeting Mickey & Minnie Mouse

And again

Wavey had a lovely interaction with Snow White. She loves the princesses because they talk to her and this particular princess was quite sweet.

Oliver's tattoo and magic band - he is a huge Donald Duck fan

One of my favorite things about visiting Florida is seeing my dear friend Susan and her daughter, Blair. *Highlight*

Blair & Waverly share a special connection

Oliver - aka Chumbly - wearing his Mickey pants ears

Waverly met her very favorite princess Cinderella and their interaction was beautiful to watch. One of my favorite moments of our trip.

Riding the carousel with Daddy

Walking down Main Street USA

Oliver loved the food and there was no treat rules on vacation

Mickey Mouse autographed Ollie's hat

Oliver waiting for his turn to ride Dumbo

Saturday, January 17, 2015

January

I recently realized I have not updated the blog all month and thought it was time for a quick summary. Basically...flu. Oliver and Matt bounced back fairly quickly and within a few days they were back to their normal selves. Waverly's poor body really took a hit and she is still coming back from it. Her immune system was wiped out and her blood counts were atrocious. Everything is coming back to baseline, except for her WBC. We are hoping she will have more energy soon. I have kept her home from school all month. I didn't want to expose her to anything else and I could tell her little body needed more time to recover. We have enjoyed the time together - I love having her home with me.

Between the winter weather and the flu, we haven't done anything exciting all month. Here are a few pictures though of our time at home.





Monday, December 29, 2014

Happy Birthday, Oliver!!!

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.







Sunday, December 28, 2014

The Christmas Flu

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

Merry Christmas!!!


Our family didn't get around to sending out Christmas cards this year, so consider this your Merry Christmas from our family to yours.

Thank you, Jill's House!

We attended a Christmas Party at Jill's House a few weeks ago. We had a fantastic time talking with other families and staff members. Oliver ate a lot of cookies - some quickly swiped as we passed the food tables. Waverly loved being sung to by some of her favorite child care specialists. 




Fantasy Flight

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

Inclusion Week

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." 
Roland Barth 

Wednesday, November 26, 2014

Happy Birthday, Wavey Mae!!

We weren't sure how we were going to celebrate Waverly's birthday. We hadn't planned a party and the weather was fairly chilly for a day downtown or at the zoo. We opted to drive to a cute Virginia town we had heard about. Quaint - good shopping - great food. Sounds perfect for us! I spent a few minutes googling places to stop and we came up with a great itinerary.

First stop was coffee and pasteries at a fabulous little bakery called "Red Truck". It was fantastic and Oliver was especially excited for his red truck sugar cookie...and some of my coffee cake 

We then went to Culpepper for shopping for food. We had some fantastic BBQ (Matt's favorite) and explored the downtown. 

No birthday is complete without a sweet treat. We stopped a MooThru ice cream for shakes. Oliver's favorite part of the day. 

Wavey Mae had a great time with her family. Our little 11 year old had a great day celebrating.

Thank YOU!!

Thanks to all of you who participated in our *Wavey Inspires* campaign. We had over 1400 people commit to perform an act of kindness in Waverly's honor. We are still getting messages from people telling us about what they did for a family with family specials in their community. It made Waverly's birthday incredibly special and joyful.


Friday, November 14, 2014

Wavey's Birthday Eve

We just put Waverly to bed. Her last night as a 10 year old. Another year has passed.

Tomorrow is going to be a difficult day. A fun day of celebrating, but emotionally rough. 

Our now 11 year old will wake up in her bed, after a night of being fed by a pump via her g-tube. We will unhook her tube, give her some meds and change her diaper. We will dress her, brush her teeth, wash her face. Support her body as we shuffle into the family room for some cartoons with her brother. We will reposition her, so her body doesn't stiffen. Stretch her legs and massage her feet. More diaper changes, feeding tube hook up for lunch. Trips in her wheelchair and time in her stander.  Snuggles on the couch. She will hold a favorite toy made for babies.

Not exactly what we had envisioned for our 11 year old daughter. 

However we will laugh together. We will sing "Happy Birthday" over and over again, because it always makes her smile. We will read "Click, Clack, Moo" and watch "Cinderella". We will light candles on a cake and relish in the chocolate icing for her. We will hold hands. We will kiss her on her cheeks. We will hold onto the moment and celebrate the 11 amazing years we have had with her.

She is pure joy.

I will cry as I say goodnight tomorrow. I will watch old videos and weep when I hear her sweet voice I so desperately want to hear just one more time.

And I will hope that we will be able to celebrate 12 years together in 365 more days.

Happy Birthday, Matt!


Happiest of birthday wishes to Matt. We are excited to celebrate with him tonight after work. 

Thursday, November 13, 2014

#waveyinspires


Waverly turns 11 years old in just 2 days. Our *Waves of Inclusion & Kindness* campaign is going strong. We have had almost 900 people commit to reaching out to a family of a child with special needs in their community. We hope to cross our 1000 people goal by her birthday. Please join us and help bring some joy to a bittersweet day.

Wednesday, November 12, 2014

Waves of Inclusion & Kindness

Our Wavey Inspires page is up and going. We have had almost 800 people like our page and pledge to do an act of kindness to a family with a child with special needs in their community. What a fantastic way to celebrate Wavey turning 11 years old on Saturday. Please consider participating in our mission. If you are on Facebook like our page, Wavey Inspires, and let us know how you plan on showing kindness to a family in your life.