Meet the McNeil Family

Meet the McNeil Family

Sunday, August 30, 2009

Cape May

We have just returned from a fantastic mini vacation. Waverly spent 3 days with my parents and enjoyed getting their total attention. She isn't too fond of sand or waves, so we thought she would have more fun with grandma & grandpa. Matt and I took Oliver to Cape May for a quick beach trip. We have such wonderful memories of taking Waverly there when she was younger. We wanted to make some memories with Oliver. He adored the sand and liked to hold our hands as the waves crashed against his legs. I was able to get some great photos and I picked a few of my favorites.

Oliver playing in the sand

Taking a nap in the beach chair

Oliver enjoying an ice cream sundae

Yum!

Oliver playing in the fountain

We kept his paci in so he wouldn't eat the sand

Our set up

Oli played for hours in the sand

He also loved lounging in his chair

Driving the boat at the arcade

Our final day on the beach

Oliver & Matt (our Inn is in the background)

Oliver walking the beach with the storm clouds coming in

Playing in the sand

Goodbye Cape May!

Tuesday, August 25, 2009

Shore

We are leaving today for a mini vacation. Waverly will spend a few days with my family, while we take Oliver to the shore. We are all so in need of a break from "real life". I can't wait to sit in the sand, listen to the waves and relax with a good book.

Sunday, August 23, 2009

Emotions

I just came out of the kids' room. Oliver was fussing and I was afraid he would wake Waverly. There is something magical about watching your children sleep. I love making sure they are all snuggled under their blankets with their favorite stuffed animal tightly grasped. The sound of their steady breathing is musical. Tonight the sadness overwhelmed me and I wept standing between their beds. This disease is so unfair, so cruel. I am still shell shocked that we are in this situation. One day, much too soon, my children are going to leave this life. The pain of losing both of my children will be with me forever.

On Friday I met with a woman from the county about a waiver for the kids. At one point she mentioned that they will age out at 21, but there are other programs that they will be eligible for at that point. Of course I didn't say anything and make this poor woman feel terrible for something she could never have known, but I froze. I nodded my head and the conversation came to a close. I just kept thinking that my kids aren't going to make that milestone.

As I watched them sleep tonight I felt like such a failure. I am supposed to protect them. I am supposed to keep them safe. I feel so helpless. My babies are slowly dying and there isn't anything I can do to stop it. I am so angry.

Thursday, August 20, 2009

MPS Runs/Walks - Show Your Support!

Many families host runs/walks in honor of their children and the proceeds are donated to the MPS Society. September and October are popular months for races and there is bound to be one in your area. Click HERE for more information and to find a race near you. There are upcoming races in Ohio, Iowa, Michigan, Minnesota, Pennsylvania, North Carolina, Virginia, California, Georgia, Texas, New York and Missouri. This is such a wonderful way to show your support for MPS families and to race in honor of Waverly & Oliver. Please consider participating.

Wednesday, August 19, 2009

Da-Da

Oliver is saying "da-da"!! He has been making the sound for awhile, but he is actually using the word to talk about Matt. It is wonderful and I know that Matt is thrilled to have this moment. Oliver tends to hold onto a word for a short amount of time, until he drops it for a new sound. We have to cherish this one and hope it will stick around.

Tuesday, August 18, 2009

Cloud 9

I am still on cloud 9 after my time with the other Sanfilippo families. Both Matt and I have a renewed sense of love for Waverly after our time with Jessie & Mackenzie. We realized, yet again, that we need to appreciate who she is today and take advantage of our time with her. There are so many changes ahead, scary changes. It is easy to get wrapped up in what is going to happen, instead of taking the time to celebrate the moment. I honestly feel like my love for her deepened.

Sunday, August 16, 2009

New Friends

We had the opportunity to spend yesterday with 2 families who each have a daughter with Sanfilippo. They are all within 3 years of one another. We had a picnic, played at the playground and enjoyed some time at the pool. It was such a special day. There is something truly amazing about being with another family that understands. There was no need for explanations or apologies. We are all used to the hair pulling, throwing objects, chewing on everything in sight. I loved being able to learn from their experience. We made some wonderful new friends.

Waverly & Jessie (don't they look like sisters)





Waverly, Jessie & Mackenzie








Wavey & Jessie


Wednesday, August 12, 2009

Goodbye Preschool

Tomorrow is Waverly's last day of summer school and therefore her last day of preschool. I can't believe those 6 weeks have come to an end. Hooray for a school district that is able to provide summer sessions for kids who need the extra help and routine. Her teacher and 1:1 have been fantastic. I wish the 1:1 could transfer with Waverly to her new school in September.

Oliver is continuing to surprise us. He has become so vocally expressive and communicative since he attended the July summer session of preschool. I think it was such an important time to see that other children speak and use words/sounds to communicate with one another. His model is Waverly and she no longer has any words. He isn't saying words per se, but he is making vocal sounds to get his point across. He is making sounds for hi & bye bye and jabbering a lot. I am so proud of him!! It is encouraging to see him learning and developing in his own unique time.

Tuesday, August 11, 2009

Finally!!!

I was so excited to open an email I received on Friday afternoon. A doctor at OSU, who I happened to contact soon after the kids were diagnosed, sent me a message about some research she is conducting on Sanfilippo Syndrome types A & B. (Waverly & Oliver have type A.) I couldn't reach anyone until yesterday morning, when I spoke with the research assistant. They are focusing on how the immune system is affected due to the disease. It will require a simple blood test, that can be done in the pediatrician's office. The immune system has never been studied in children with Sanfilippo. This is a starting point, but they are finally starting. As a mom, there is nothing more frustrating than feeling unable to do anything to help your children. While my hopes aren't high that a treatment will be found that will reverse the damage already done to Waverly & Oliver's brains, I am hopeful that eventually a treatment will be discovered to help the Sanfilippo kids of the future. And maybe one day, a cure. Our family will do whatever possible to eliminate this awful disease and not allow another parent to be told their child is going to die much too early and there is nothing we can do about it.

Saturday, August 8, 2009

One Year Ago Today...

I just realized that one year ago today we were on a flight back to the US from London. We had packed out and said goodbye to some very dear friends. It feels like much more than a year since we left. So much has changed in the past 12 months. While in London after the kid were diagnosed, it felt safe and far removed from everything. We soaked up each moment, because we knew it would be our last overseas experience as a family. I miss the group of ladies with whom I spent most of my time. They supported me and encouraged me in such memorable ways. They were with me through some very dark days. I will forever be thankful for their friendship. London will always be an incredibly special place for Matt and I. Waverly "peaked" in our first few months. She reached her highest point of development there. Oliver had so many of his firsts - solid foods, sitting up, crawling, walking. We were so happy there and everything felt so right. We had embarked on such an exciting new adventure and we truly thought the foreign service experience was going to be incredibly beneficial for Waverly & Oliver. I miss London. I miss my friends. I miss the ways things used to be.

Friday, August 7, 2009

Zoo Day

Matt had off today, so we packed up the kids and headed to the zoo. We met my friend Katie & her kids there and had a wonderful afternoon together. I bought my camera, but didn't get many shots. I was able to get this great smile from Waverly. The male lion was pacing and she was laughing while watching him.


Oliver has been really into the Tigger backpack and wore it for most of the time we were home. We paired it with the Tigger baseball hat. We are trying to get him to wear a hat, but he doesn't like the bill. So turning around seems to keep him happy.


Thursday, August 6, 2009

School Supplies

I was in Target earlier this week and very excited parents were in the school supplies aisles selecting backpacks, pencils, and folders for their children. A mom and her adorable little girl were working on selecting a lunch box. They were checking off items from a list of things she would need for kindergarten. It was such a simple task. But it is one that all parents cherish...and usually shed a few tears over.

I have been shedding many tears this week anticipating the arrival of Waverly's list. Her checklist will be significantly different than most. I am so thankful for her placement. She is going to be in a small class with other moderate to severe special education students who are within a few years in age. She will have a 1:1 assistant to guide her through her day. Her school bus is a little one with an attendant on board and she will be donning her special safety vest.

Her first day of kindergarten is rapidly approaching. And in the midst of the back to school excitement, I cannot help feeling sad. I wish she were a healthy little girl, excited about the new friends she was going to make, what outfit she would wear and which backpack to select. I wish she could talk to me about her nervousness and ask the cute little questions that 5 year olds are known for. I love her for exactly who she is, but I wish she could be who she is supposed to be. A happy little girl, free of this terrible disease.

We have to work to find a cure.

Sunday, August 2, 2009

An Afternoon With Friends

Our friend Penny and 2 of her kids, Hannah & Lucas, came over for a visit yesterday afternoon. Hannah is 5 and has Sanfilippo. She also has a little brother, Aiden, with Sanfilippo. He is currently undergoing a transplant at Duke. Penny had to come up to DC for some errands and we were thrilled to be able to see part of the family again. (We met them earlier this spring.) We went to the playground, then had a pizza and ice cream dinner. Here are a few photos I took during our time together.

Oliver & Lucas eating pizza together at the "boy's table"

Oliver & Hannah playing in the car together

Oliver trying to push Hannah out of the car

My sweet Waverly

Another great Waverly shot

She was in a smiling mood

Oliver walking up an incline

Oliver clapping for the soccer game

Oli can now sit and push himself down the slide all by himself!!!

Hannah and Wavey playing together

Saturday, August 1, 2009

First Swim of the Summer


We have a beautiful pool at our apartment complex, but we have hardly used it. Matt took Oliver into the water on Friday and Oli loved it. Wavey has never enjoyed being in the pool, which is why we tend to avoid it. But Oliver has showed such interest every time we walk by. He kicked and paddled his hands and spent about ah hour playing with Matt. It was so cute. I think I will have to take him while Wavey is in school the next 2 weeks.