Meet the McNeil Family

Meet the McNeil Family

Thursday, September 24, 2015


Our family had the amazing opportunity to meet a very dear friend of mine and her husband a few weeks ago. Helen and I have been exchanging emails, voxers, and face times for a few years now. She lives about as far away as one can live from us in the beautiful country of New Zealand. Although miles of land and oceans separated us, she spoke my language. She is also the parent of two children with Sanfilippo, an older daughter and a younger son. A woman who gave up her career to care for her kids, whose husband was ever present in their care. 

Since we met online a few years ago, she has watched both of her children pass away due to complications of this cruel disease. And I have grieved from afar along with her. Grieving for her loss whilst thinking about my own anticipatory grief. 

Lots of nerves accompanied her visit. I had butterflies in my stomach, hoping that our deep friendship via an Internet connection would translate into real life. And it did.  

We tripped over our words, adjusted to accents. (Matt trying to understand them saying the Getty Museum will forever be an inside joke.) Dipped in and out of talk about Sanfilippo and all other aspects of life. Matt and I were inspired by them. They exhibited grace and love. We laughed a lot and cried during a heartfelt goodbye. There wasn't enough time. 

And hanging over our conversation was the promise of seeing one another again. Matt and I would take our turn and travel to NZ. Yet we were all painfully aware that that journey will only happen after we too say goodbye to our children. 

Wednesday, September 23, 2015

First Day of School

Oliver is in 3rd grade and Waverly is in 6th grade. They are still at the same elementary school and Waverly is entering her final year with her classmates who have known her since kindergarten. I was surprisingly emotional dropping them off for their first day. I know this is going to be a great year. They are in the same class with a familiar teacher and aides who love them. Their grade level teachers are fantastic. When we went to the Open House, both teachers had desks ready in their classrooms and their names were included on all of the class lists.

Here's hoping for a fabulous 2015-2016 school year!

Settling Into Our New Normal

Waverly has had a long month. She has endured a lot of doctor appointments, new medications and changes to her routine. Thankfully she is a resilient little girl who adapted more quickly than I. 

In some positive news, her back brace is doing what is supposed to do. Whilst wearing it, the curves in her spine went from 50+ degrees to about 30 degrees. The orthopedist recommended that she wear it whenever she is awake. It has certainly added an extra long step to our morning routine, but I know the benefits outweigh the aggravation of strapping her into the brace each day.

She has also tolerated her new seizure med quite well. She was fairly sleepy that first week, but we have worked up to her full strength dose and she seems brighter. We can elicit smiles and an occasional giggle which thrills me. And (knock on wood), she hasn't had a seizure in about 2 weeks. 

I feel as if life has slowed down more for our family. It's taking me much longer to prepare the kids for their day. Simple tasks are requiring more effort and time. I seem more aware of beauty in simple things - holding her hand, taking a walk around the neighborhood, glancing at her big brown eyes in the van.

I am embracing the slowness. Embracing the simplicity of life. Thankful for today.

Friday, September 4, 2015


Waverly is on day 4 of the new seizure medication and thus far it hasn't been too bad. The doctors kept warning us of potential aggression. I almost wanted to see that in Wavey, because she has never displayed even a hint of unkindness. It looks like sleepiness and general malaise are what we will be dealing with. She is only on a partial dose this week and I am a bit concerned how drugged she will be when we reach the maximum dosage. I fear zombie-like behaviors.

I find myself growing more protective of her, especially when we are out in public. It took me a few days to work out why I was feeling this way. I think that over the past month, Sanfilippo has taken more of a hold on her. She is drooling more, appears vacant, and has lost her spark. It is more difficult to gain and maintain her eye contact. Her smile and giggle are hidden deep inside and growing impossible to find at times.

I'm sad that as we navigate life, people's perception of her is so wildly misunderstood. This snapshot of who she is in this moment is not at all definitive. I want them to see my pigtailed beauty who radiates love and kindness. I want them to be drawn to her eyes and to see the smile that used to light up across her face when she would meet a new friend. I wish I could play recordings of her infectious laugh that always brightened the room.

I miss her, yet I am so fortunate to still have her right here with me.

It is always unsettling to know if this is a phase that we will bounce out of once we get her seizures and medications under control. Or is this our new normal and I will speak of her infectious personality in the past tense.

Tuesday, September 1, 2015


It has been an incredibly long two week journey. We thought dystonia would be the diagnosis, but after seeing a few specialists they believe Waverly is having seizures. They are both terrible diagnoses, but more is known about seizures so I see it as the lesser of two evils.

We started her on a seizure medication this morning. The side effects are moodiness, aggression or drowsiness. I am keeping a close eye on her today and for the next few days as we wait to see if this particular medication is a good fit. I have been warned that there is a lot of trial and error with these meds. Hopefully we can find the best option quickly with minimal side effects.

I have to admit to being utterly exhausted throughout this ordeal. Each new phase is painful, but I have been dreading the start of seizures. Wavey has not been herself and I hope to see the twinkle come back soon. I miss her.