Meet the McNeil Family

Meet the McNeil Family

Thursday, December 31, 2009

Hello 2010


I cannot believe another year is over.  Time is flying by so quickly.  I hate that.  I want the days to linger and months to feel like years.  But alas, that is not the case.  I have never been a huge new year celebrator.  I am not one for resolutions.  This year Matt is working late and the kids are asleep.  I am already under the blankets, ready for sleep.  I spent some time looking over the past year in photos, blog posts, videos and statuses.  We survived and in so many ways had a wonderful time doing it.  We made some amazing memories.  

It is always difficult for me to explain that I can savor moments with Waverly & Oliver and experience pure joy in them.  However, at the same time my heart is heavy with sadness.  I never feel as if I can adequately express both extremes honestly.  I am afraid I will sound insincere - faking happiness or putting on a "brave face".  Or I will wallow in sorrow and bring down all those around me with my gloom.  I hope I can continue this blog into the new year, being as honest as I can be in the midst of such turmoil.

Iit was a year full of incredible memories.  I cherish my time with the kids unlike ever before.  I appreciate the small things.  I am a very blessed mom to have had a full year with my 2 amazing children.

I am heading into 2010 with apprehension.  I have no idea what the year holds, but I know that we are going to take each day as it comes and thank God for another day.  Another day with the most incredible kids.  Another day to be a mommy.  Another day to hope for a miracle.

I hope you all have a wonderful New Year's Eve where ever you are.

Wednesday, December 30, 2009

Happy BIrthday, Oliver!!

My little boy turned 3 years old today.  He has been quite an adventure.  He was born with both heart and lung issues.  For those first few weeks we thought we were going to lose him.  Then at 6 weeks he was diagnosed with hearing loss.  And then at 1.5 years he was diagnosed with Sanfilippo.  But here he is at 3 - the best little boy in the world.  He may be slow to warm up, but he will eventually come over with head down to hold your hand.  He is has a quick temper, but can be easily calmed.  He loves to bring people together to hug - even complete strangers.  He has an infectious laugh.  He is meticulous with his toys and is a total problem solver.  He likes things a certain way - very Type A.  He loves to cuddle and gives the biggest, if also the wettest, kisses.  I am so incredibly blessed to call him my son.



We had another party for him tonight.  Just our family and a cake.  He loved when we sang "Happy Birthday" and ate the chocolate with buttercream icing cake.  (Thank you Wegmans!)









Tuesday, December 29, 2009

Oliver's Birthday Celebration


















Last night we celebrated Oliver's birthday with my family.  He had an ice cream monkey cake and LOVED it.  He was also given a xylophone.  As you can see by the photos, he had a lot of fun playing with it.  Waverly loves birthday parties, so she was in heaven.  Between the "Happy Birthday" song and ice cream cake, she was all giggles.

Christmas in Pictures












We had a wonderful Christmas.  We were busy with family and Christmas parties for much of the holiday.  Oliver's favorite toys were his Handy Manny toolset in soft plastic (easier for chewing) and drum.  Waverly was given some great cloth books, links and a musical Pooh Bear.  They also got matching pjs.

Friday, December 25, 2009

Merry Christmas

I hope you have all had a wonderful Christmas.  We drove up to PA last night to spend the holidays with my family.  We ended up coming a day earlier than expected, due to impending icy weather.  The kids were very excited to be at Grandma & Grandpa's home.  We all opened present this morning.  Waverly received some books and toys that she can chew.  Oliver got books, bristle blocks and a new Handy Manny tool set.  (For those of you who know Oli, you know he plays with his tool set every day for hours on end.)  This set doesn't play music, but it is a softer plastic and safe to chew.  Almost immediately the screwdriver was in Wavey's mouth and Oliver was chewing the wrench.  It was very laid back and relaxed.  My sister and her family arrive tomorrow.  I think we have 3 additional Christmas parties to attend before we head back to DC.

Christmas came too quickly this year.  I felt unprepared and rushed.  I usually savor the weeks leading up to it.  This year I was running around, forgetting gifts, and not doing the usual tranditions we have come to enjoy.  I think the trip to Florida and the blizzard both had an impact.  I will not let this happen again next year.

Wednesday, December 23, 2009

Unspoken

I am still on a high from the conference.  It was simply lovely to be together with so many other families who "get it".  There was never a need to explain or apologize.  We all understood.  There are so many different people - people who may not typically be drawn into my circle of friends.  However, the fact that we share the joys and sorrows in having a child with MPS brings us closer.  There are a few moms whom I have gotten to know who are especially dear to me.  It was such a treat to finally meet them and share some face to face time with them.

I keep thinking about the beautiful children I met.  Some of them I feel as if I know.  I follow their blog or see their photos on facebook.  It was such a treat to finally meet them.  There were families there with young children - babies - who have been recently diagnosed.  Of course there were families similar to mine...a few years into the diagnosis and finding our way.  I met families with children older than mine, confined to wheelchairs and slowing down considerably.  And then the moms of children who have passed, there to show their support for the rest of us.  It was quite powerful.

I spent a lot of time watching the older kids and their families.  I am so unsure of what the future holds - when, how quickly, what the disease will look like as it progresses in Waverly & Oliver.  It scares me.  And to be honest, seeing the older kids was difficult.  I am sad for their families.  I hate seeing these absolutely beautiful children suffering with this disease.  It isn't supposed to be this way.  But they are still there.  Even though they aren't as interactive, not much eye contact and such dependence on their parents, they are still there.  You can catch glimpses - a smile, a look.  Our children have such beautiful eyes - windows to the soul.

Tuesday, December 22, 2009

Monday, December 21, 2009

Disney Conference

Waverly & I spent this past weekend at Disney World for the MPS Society's family conference.  It was absolutely wonderful.

We flew down early Thursday morning and she was perfect on the plane.  We took Disney's Magical Express to the resort and checked into a lovely room at the Coronado Springs.  My friends were all coming in on flights later in the day, so we ventured over the Downtown Disney for lunch and a walk.  We came back to the hotel and met my friend Laura and her daughter Julie.  Julie has Sanfilippo.  Laura and I have been phone/email friends for about a year.  It was wonderful to finally meet and get to know one another.  Julie is adorable!  It was her suggestion that we attend the conference and I am so glad we did.

The MPS Society hosted a welcome banquet that night.  I was totally impressed.  They had a huge banquet hall in the convention center.  It was filled with tables and a delicious selection of foods, including kid friendly fare (chicken, applesauce).  Mickey, Minnie, Pluto, Donald and Goofy were also there to meet the kids.  There was a professional photographer available for family portraits.  They had a man making balloon animals.  It was fantastic.  Wavey loved meeting the characters.  She was especially fond of Pluto this go around.

That night all of the Sanfilippo parents got together for a Q&A type session.  There was childcare provided and I have to say I was quite apprehensive about using it.  That is until I checked it out.  It was staffed with some family and friends of a local Orlando family whose daughter has Sanfilippo, along with some professional child caregivers.  They had a movie area with a huge screen and pillows scattered all over the floor, a craft area, computers, smaller tvs, music, hula hoops, tons of toys and every hour was a different activity.  Ronald McDonald stopped in, clowns, magicians, etc.  It was amazing!!  Wavey loved every moment!

It was incredible to be in a room made up entirely of Sanfilippo parents.  The atmosphere was one of understanding and assistance.  Questions were asked and then parents were able to give some advice based on their experiences.  All around the room I was able to meet people who I had spoken to immediately after Waverly & Oliver were diagnosed or I had been able to speak to them after their child(ren) were diagnosed.

Friday was filled with meetings and sessions.  I have to say that I didn't come away with a lot of additional knowledge of the disease.  Instead I felt energized by being around some many other families who just get it.  I have never seen so many kids in MacLaren Major Elite strollers in my life!!  The connections among the other parents was the highlight of my time.

Saturday we went to the Magic Kingdom with my friend Laura and her daughter, plus my other friend Cari and her family (her daughter Jessie also has Sanfilippo).  All of the girls are about the same age.  It was so cute to see them together.  Wavey was so expressive on the rides - giggling the entire time.  She also really enjoyed the electric light parade in the evening.

Sunday we slept in - 7:30, which is huge in Wavey World.  We had breakfast, said goodbye to some friends and went back to Downtown Disney for a few hours.  We bought Oliver a Tigger stuffed animal and Matt some sour gummy candies.   Of course we went to Ghirardelli for a scoop of ice cream for Waverly and a sea salt caramel hot cocoa for me - YUM!  Then back to the hotel to take a walk and play on the playground before heading to the airport.

Fortunately I had changed my flight on Friday morning.  We were supposed to fly out Saturday night, but with the snow storm I knew the flight would be cancelled.  The airline rebooked us for Sunday night, so we had a confirmed seat.  Our flight was delayed a bit, but we were back home around 2 am.

Waverly was a super star.  She couldn't have been better the entire time.  I had a fantastic time with her.  As much as I missed Matt & Oliver, it was truly a treat to spend so much time with her..especially in such a fantastic location.  She was super happy and loved all of the attention given to her by the other families.  She did a lot of walking around the resort and park, which tired her out each night.  I am so proud of her.

(I will post some photos later.  I forgot my camera, so I will have to wait for others to send me some pictures.)

The Blizzard of 2009

While Waverly & I were enjoying the sunshine in Florida, Matt & Oliver were surviving the blizzard of 2009.  Beginning Friday night the snow starting falling and didn't stop until early Sunday morning.  We ended up getting 18 inches and that much snow shuts down DC.  The boys were trapped for 2 days, but they were able to go out and enjoy it.  Oli hasn't ever really played in snow, so this was a treat.  He loved it...although he wasn't dressed for it.  (I am pretty sure Matt put ziploc baggies over his socks to keep his feet dry.)






Wednesday, December 16, 2009

Mickey Bound



The MPS Society is hosting a family conference at Disney World this year.  We were not planning to attend, but last month I found a great deal on a flight and there were still free rooms available for families.  Another mom and I decided to just bring the girls and make a weekend out of it.  So Waverly and I are flying out early tomorrow morning for 3 days in Orlando.  We will have one full day at the conference and one day at Magic Kingdom.  It is going to be a quick trip, but a lot of fun.  This will be an exciting time for me.  Finally the chance to meet and reconnect with some moms who have become such close friends.  Friends who can truly understand what it is like to be in my shoes.  They are such a treasure.

This will be the first time in a long time that Waverly and I are traveling alone together.  I think we will have a wonderful time...as long as I can keep her content on the short flight.  My biggest worries are her continuously kicking the seat in front of us and having a huge accident while the seatbelt sign is illuminated.  I think it is going to be a wonderful time for Wavey and I to bond.  And Matt and Oliver are planning a fantastic boys weekend, complete with pizza, trains, Christmas lights and museums.

Tuesday, December 15, 2009

Tuesdays

Tuesdays are always busy days.  Both of the kids have their therapy sessions - Occupational Therapy & Physical Therapy - all at different times.  I spend most of the day running them back and forth to schools and the therapists' office.  Today I had to pick Oliver up at school.  This is the first time he didn't take the bus home.  When I walked into his classroom, the kids were watching a video while the teachers were getting lunch ready.  Oliver was walking around the room, a bit aimless.  When he saw me he burst into tears.  He ran to me and then backed away - he was so confused.  Transitions from mommy to school/therapy do not typically go very well for him.  He is quite attached and doesn't like saying goodbye.  But once I took his hand and picked up his jacket he was okay.  He did insist on wearing his backpack though.

Oli has blossomed since he started school.  Summer school was 4 weeks of adjusting to the separation and learning the routine of school.  These past 3 months he is beginning to interact with the other children and truly enjoys their company.  I tend to spend less time with Oliver among his peers.  When he was younger, he tagged along to play dates with children Waverly's age.  And then once we moved back to DC, we simply weren't around a lot of other kids anymore.  When I walked into his classroom today, I was able to watch him for a few minutes before he noticed I was there.  I saw how he didn't sit with the other kids, but rather wandered around away from the group.  Wavey used to do this all of the time at this age.  I remember that around age 3, I really began to notice the differences between her and other children.  It hit me that I am beginning to see those same differences in Oliver.  They are expected and I have been anticipating them, but it was still painful to see.

He is doing beautifully.  He is continuing to learn and develop new skills, just at a slower pace than the other kids.  I am so proud of my little boy.

Monday, December 14, 2009

Cookies!

We got in Christmas spirit yesterday and made some sugar cookies. We were going to have the kids help us decorate, but they respond to cookies like Cookie Monster.  As soon as they see a cookie, it is in their mouth.  So Matt and I made these last night.  It was quite fun and they taste delicious.




We also went to a Christmas show put on by the children at our church.  It was the story of Corduroy, adapted for Christmas.  It was very cute.  Oliver clapped as soon as we sat down, but they just wanted to run around once the show began.  Wavey sat beautifully for the entire time.

Thursday, December 10, 2009

Gift Giver

Last night I was preparing the kids' backpacks for school, when I found a bunch of items in Oliver's bag.  There was a plastic tomato and pile of peas, spatula, cup, plate and a book.  I assumed that Oli stuck them in his bag, but I wrote the teacher to make sure they weren't some odd reward.  His teacher wrote me back this morning to tell me that he loves to put toys in his backpack and has recently started putting them in the backpacks of the other kids in his class.  In fact earlier this week he put his favorite toy, a spoon, into a classmate's bag and the boy said "Oliver gave it to me".  (Why is a spoon his favorite toy?  I bet it has something to do with his love of eating and he likes drumming the table with spoons.)

In his own unique way, I think Oliver is giving gifts and sharing toys with his friends.  He is becoming more and more social at school.  Even though this is a behavior we need to stop - he can't steal toys from school - it shows a cognitive awareness of sharing.  I am quite proud of my little thief.

Wednesday, December 9, 2009

OTR

Last night my friend Laura and I went to see one of my favorite bands play at the Sixth&I Synagogue in DC.  Matt gave me the tickets for by birthday.  He likes to give experiences instead of things - I love that.  I have been a fan of Over the Rhine since I was a freshman in college and their songs have been a constant companion.  Music has a way of touching my spirit in a very special way and my tears usually come when listening to songs.  They did not disappoint.  It was a great night.

If you aren't familiar with their music, check them out on itunes.  Their song "Professional Daydreamer" from the Ohio album is one of my favorites and I was thrilled they performed it last night.  It was the highlight of the concert for me.

Monday, December 7, 2009

Welcome to Our Chaos

A few entries ago I wrote about our new normal.  Matt and I both feel like we have settled into life as we now know it.  We have been a bit isolated the past year, but I think we finally feel ready to "enter society" again.  I think hosting Wavey's birthday party was our first step.  We had some friends over for bunch Sunday morning and it went really well.  Even though our life feels chaotic, we are welcoming people to join our chaos.

Having 2 children with Sanfilippo is difficult, for all of the obvious reasons.  I never know what to expect with Waverly and I am always anticipating with Oliver.  He turns 3 in a few weeks and I have been dreading this birthday.  By age 3.5 is was quite obvious that Waverly was behind her peers.  I think that age has always been in the back of my head pertaining to Oli..almost like some kind of bizarre countdown. I know that Oliver's progression with the disease could be different from Waverly's, but in all likelihood it will be very similar.  I hate knowing what is to come.

Friday, December 4, 2009

Christmas Has Arrived

Christmas has finally arrived to our home.  I am usually anxious to begin decorating immediately after Thanksgiving, but this year I was delayed.  No particular reason, although I think a part of me does hate that I have to significantly limit the decor.  Our apartment is so small, it can't really handle too much in way of decorations.  Plus, the kids will pull down, knock down, tear down and chew anything they can possibly reach (and Wavey is really getting tall!).  So I put up the tree tonight with lights and bead strings, put some candles in the living room windows and hung their stockings up high where I hope they won't be able to reach.  It is simple, but still lovely.  I love the glow from Christmas lights.






Oliver came home from school today with a gingerbread house he made.  They basically covered a milk carton with gingerbread crackers and then decorated with icing and candy.  It is adorable!!  There are areas quite lacking in decoration...I think he got hungry.




Thursday, December 3, 2009

Ma-Ma-Ma

Oliver has decided that he no longer wants to nap.  Unfortunately, his body does not like that decision and is protesting.  He became so weepy after dinner that I had to put him straight to bed.  He just stood in the corner, with his lip out and whimpered.  It was such a sad sight.  Hopefully he will take my advice and nap tomorrow.

Wavey hasn't said mommy for a few days.  She was saying "ma...ma...ma...ma" and I could see in her eyes that she was trying to get it out, but her brain just isn't allowing her to form the word anymore.  I think that as quickly and mysteriously as it appeared, it may have faded away once again.  I am sad to see it go.  I remember crying when I realized she had stopped saying it.  I was devastated to realize that I would never hear it again.  And then I was given the gift of hearing it over and over again for a week.  I captured it on tape and I will always be able to listen to her little voice say my name.

Wednesday, December 2, 2009

Birthday Party #6 (I think)















Of course we had to have another birthday party for Waverly over Thanksgiving.  My family got together to celebrate her over a ladybug ice cream cake.  It was delicious and we had a wonderful time.  The last picture of Wavey is one of my all time favorites.  I just LOVE the smile she is giving Matt across the table.

Tuesday, December 1, 2009

December Already

I cannot believe it is December already.  Fall always goes by so quickly with birthday celebrations and Thanksgiving.  I have a feeling December will fly by as well.  I have been working on Christmas shopping for the kids.  It is becoming easier.  I used to get hung up on what I wish Waverly would like to play with, instead of what she is able to play.  I found some great chewy type toys and those that can attach to her chair/stroller with links.  Oliver still loves to explore new toys, but I am choosing ones that I think will be useful for a longer period of time.  Plus no small pieces!

I remember when the kids were first diagnosed, other parents of children with Sanfilippo would say "it gets easier".  I thought they were crazy!  But I think that I am beginning to understand their point.  The pain from the diagnosis doesn't lessen.  In fact, the depth of sadness from the disease grows.  However, I am becoming used to our new normal.  My expectations have been adjusted and it seems easier to cope with the day to day.  This doesn't mean I don't have moments or situations that overwhelm me or cause me to breakdown.  I do!  However, the shock has worn off and I am settling into life as I now know it.  It only took 20 months.