Tuesday, May 12, 2015

MPS Awareness Day

 MPS Awareness Day is Friday May 15th. It is a special day for our community. It's a day to bring awareness for this rare family of diseases and highlight the amazing kids who exemplify courage every day.

Life isn't easy for Waverly & Oliver. They have lost everything they gained over their first few years of life. Wavey has lost her words, the ability to speak, to do puzzles & perform basic tasks, to use the potty, to run, to climb, to walk, to chew, to swallow, to roll over in bed, to reposition herself. And Oliver isn't far behind his big sister.

They have chronic neuropathic pain. Wavey's hip has necrosis and her bones actually grind on one another. They have seizures, hearing problems, vision issues.

They are different. They go through life getting stared at and second glances. People avoid them. People point at them.

However Waverly & Oliver are resilient and show grace. They respond with smiles and giggles. When you get eye contact with them, you can feel it in your soul. They have impacted the world around them. They remind people to be thankful for their health and to slow down so they can enjoy the little things in life.

Friday is our day to celebrate them. To wear PURPLE - the color of courage. We want our friends to take a moment on Friday and tell someone WHY they are wearing purple. Take a picture of your family and share it on social media #mpsawarenessday.

Thursday, April 30, 2015

Chill Out

A friend of mine gave us the most wonderful hand-me-downs ever. Chill Out Chairs! I have been trying to get insurance to approve them for years, without any luck. They are super comfy positioning chairs, with ottomans to elevate the legs. Waverly is developing scoliosis, so keeping her positioned straight and in the paper alignment is important. These chairs make it possible, while keeping her cozy. What a fantastic gift for Waverly & Oliver.




Tuesday, April 21, 2015

Dreams

I have had two significant dreams in my lifetime. Dreams that felt so incredibly real it was difficult to return to reality upon waking.

The first was a number of years ago. Waverly had lost all of her speech and I longed to hear her sweet voice again. I dreamt that she was playing in the forest. She was wearing a lovely little dress and she was singing a song Grover used to sing on 'Sesame Street': "around, around, around, around, over, under, through". And as she said each word she would act it out - twirling around tree trucks, jumping over fallen branches and ducking under low ones.

In this particular dream, I was an observer. Watching her dance without her knowing I was there. Part of me likes to think it was a taste of her whole and healed. No more Sanfilippo encumbering her. Just a happy little girl exploring the forest, where I have always feel peace.

A few weeks ago I had another dream. A nightmare. It was horrible and I awoke screaming and crying. It is still quite personal and I want to hold the memory close to my heart, but suffice it to say it was a dream about Waverly dying. I cannot adequately express the emotions I felt when I woke up. It was the most intense pain and indescribable ache. As if I was given a brief sample of what was in store.

I haven't been able to shake the fear. Was this a premonition or preparation? Each morning I fear opening up her bedroom door.

I *thought* I had an understanding of what grief will be like, but I was reminded that I have no clue. And how does one really prepare. The tiny taste I was given while I slept was enough to terrify me and weaken me.

A few weeks have passed and I can still vividly recall the dream. I can feel the fear. I have to keep reminding myself to be present and enjoy the moment. Make memories, soak up the smiles & giggles, steal hugs, and kiss chubby cheeks.

Oliver's 7 Year Diagnosis Anniversary

Oliver's 7 year diagnosis anniversary has come and gone. It was on my iCal and I thought about a few times during the day. My mind was elsewhere and I wanted it that way. No need to dwell. I have enough instances of sorrow and grief in my everyday life to focus on a date as a source of sadness.

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.