Meet the McNeil Family

Meet the McNeil Family

Monday, March 20, 2017

How To Get Through Hospice

I had multiple conversations with people recently about what was helpful for our family whilst Waverly was on hospice. I thought this could be a beneficial post for many of you.

For Friends
1. Meal delivery is such a fantastic way to help. However, many families don't have the time or energy to chat with visitors. Setting up a cooler on the front porch is a great system. People can fill the cooler with food and then text the family saying a meal was just delivered. (We had my cell number written on a paper taped to the cooler lid.)
2. In addition to meals, we had friends bring paper products - plates, utensils, napkins, cups, etc. Not super environmental, but it certainly was nice to just toss stuff after each meal. 
3. Get creative! When setting up a meal train it is nice to get information on food allergies and aversions. The family is going to get a lot of lasagna and chili, so try something new. Also take out from a favorite restaurant is a nice treat. Or just bring snack type items - crackers, cheese, cut up fruit, etc. Having small bites at the ready is so helpful.
4. Fill the house with flowers. I love the fragrance and the beauty flowers provide. And it doesn't have to be a pricey arrangement. We had fresh tulips when Waverly was on hospice and I still buy myself a bunch to brighten the house.
5. Coffee, cupcakes and ice cream can be delivered. Get together with some friends and ship some special treats if you aren't local and able to deliver a meal.

For Families
Don't be afraid to create boundaries for yourself. We ended up hanging a sign on our door asking people not to knock or ring the doorbell. We were focusing on our daughter and couldn't take visitors.  Even our UPS man and postman knew to just leave packages for us; we would find them. People want to come to say goodbye or to check in on you. Take it moment by moment. Set time limits. When you are in the midst of chaos, it is nice to be able to control some things.

Accept help and try to remember that most people have very good intentions. People are sad and you are in the strange position of grieving and comforting those around you. There are those who want to "cling on". I think some people find purpose in your tragedy. Blow them off. 

As difficult as it is, try to be specific with needs. We needed people to help us drive Oliver back and forth to school. We also needed help with raking leaves at the end of autumn. Thankfully we had two friends act as gate keepers for us. They fielded questions and requests. If I needed milk from the grocery store, an email was sent out to those who wanted to help. Soon after I would get a text saying milk was in the cooler. It was incredibly helpful.

I felt a lot of pressure to thank everyone. I realized that I could not possibly keep up. A quick reply text sufficed. Plus my gatekeeper organizer friends were forward thinking, reminding everyone with each message just how grateful we were.

These certainly don't apply to everyone and are only meant as suggestions. I would say don't pop by unexpectedly. A text or a note is a much less intrusive way to say you are thinking of them. Anything you can do to express your love will be appreciated.

Sunday, March 19, 2017

16 Months and One Day

The second year is more difficult, they said. I couldn't imagine it could possibly be more painful than they rawness of those first few weeks. When the tears were constantly flowing and my chest felt like it would collapse from the heartache. I am still not sure it is more difficult, but it certainly is different.

I go about my routine and although Waverly is always present in my thoughts, my mind knows she has died. I no longer glance into my mirror and expect to see her smiling face. My internal alarm clock no longer goes off at 9:30 reminding me to hook up her feeding pump for her overnight meal. Yet I still stutter when asking for a table for three.

When grief descends, it comes like a fog. Rolling in from the distance, I can see it approach and feel the change. Ominous and oppressive, it takes it's hold and settles in. For a while I find comfort in it. I can hide and burrow, allowing myself to feel. Moody.

I am in the fog now. I have dear friends dealing with serious complications from Sanfilippo. A friend's daughter passed away this week. I find myself back there, in the weeks before Waverly died remembering the awfulness of death. The tension of wanting her suffering to end, but knowing that losing her would be utter devastation.

And as I sit in this fog, I see Oliver. Clearly. And I panic. 

Wednesday, March 15, 2017

A Continuation

Another child passed away this morning from Sanfilippo Syndrome. I have never met the family, but we have exchanged messages through the years. We have liked one another's photos on Facebook. We have connected through the keyboard many times. My heart breaks for them.

My most recent blog post was about grief and social media. I suppose this is going to become a continuation. The internet and especially Facebook has allowed communities to spring up. Families affected by rare diseases have found one another online. We can share tips on medication or equipment, the best diapers for overnight, exchange items our children have outgrown. Through all of these posts and messages, relationships form. Friendships are made and connections deepen with those you find common ground.

I am so thankful for those women who have gone from profile pics to true friends. We text and call one another. We have vacationed together and met for dinner whilst passing through towns. We show up for special events. And we are there to mourn together.

It is risky to enter into these communities. Not only do I have to watch the disease ravage my two children, I also have to see it ravage my friends' kids. Girls and boys I have grown to love over the years succumb to the disease and I grieve. And each time I am faced with grieving Waverly all over again.

As a form of self-protection I limit my contact with newly diagnosed families. It is not because I don't care, but rather I am not sure my heart can take bonding with another terminally ill child. It hurts to watch another family suffer.

So this is another public service announcement for those entrenched in rare disease. It is okay to say enough. It is okay to retreat and put up some barriers. Protect your heart. This journey is difficult enough.

Monday, March 6, 2017

Social Media and Grief

I have been thinking a lot about social media from the prospective of a grieving mother. I have been talking with several different Sanfilippo families, some of whom have a child who has passed away and others who have a child in the throws of the disease. I am not sure how fruitful this post may be, but I am hoping it can provide some reassurance to someone out there.

I have always been one to share our experiences. It is therapeutic for me to write about my feelings, allowing them to flow out and see where they guide me. It is also a beautiful journal that I have been able to delve back into the years prior and reflect on all I have learned and how I have changed. I also hope our story can help others on the rare disease journey and now on the grief journey.

The year before Waverly died I drastically changed the way I shared on this blog and via my social media platforms. She became very sick with the flu and I could see in her, even after her recovery, that she didn't have much time left on this earth. My mom gut was raging, prompting me to prepare for her passing. We did many things. Met with our doctors to have a DNR order in place, spoke with the priests at our church about funeral plans, and I also changed the way I shared about her. I turned inward and wanted to be very protective of her. This was her journey and my job as her mother was to walk with her through it from beginning to end.

I wanted to honor her privacy and personhood. I began by purging my friends list on Facebook. I wanted to be surrounded by actual friends. I had seen other children's passings as theater at times. I have a blog and a Facebook page to share things with those on the periphery. I could post in support groups as needed. However I felt the need to pull in, almost like nesting before giving birth. I wanted to create the safest and calmest space for what was going to become the darkest of time.

I also began sharing photos of Waverly that didn't show the way the disease was ravaging her. There were more photos of her beautiful hands gripping a toy, her feet crossed in her fuzzy colorful socks, her shadow on the sidewalk after a long walk in the neighborhood. Still describing the symptoms, but allowing my words to create the picture.

Those of you who read the blog know that it took me a year to share what her final day on earth was like. I wanted to hold that like a precious secret in my heart. And I still have details that are mine alone.

It wasn't right nor wrong. It was a choice I made. And I am so thankful I did. It was what I needed. It was what she needed.

All of this to say, as I watch fellow families deal with those Latter Days. Create a safe space for yourself and be cognizant of the fact that this is about your child. Retreat, share, delete, unfriend, post photos - do whatever is best for your mental health and heart. You have some control in the journey.