Meet the McNeil Family

Meet the McNeil Family

Saturday, October 17, 2015

The Unknown

I wish I could give you all a firm answer as to what is happening with Waverly. I wish we knew for sure. There is still hope that this could simply be seizure medication related and we just need to find the right med. However given so many new symptoms and changes we have seen over the last few days and weeks, we are faced with the sobering reality that this is disease progression. And she is most definitely in pain, which is the absolute worst part of this entire process.

We have known for over 7 years that Sanfilippo Syndrome would one day take her life, as well as Oliver's. We have lived in slow moving disaster mode for years. We have grieved the loss of hope, we have adjusted to new normals along the journey.

I am conflicted as to how to *feel*, as if there is a right way. I need to just allow my emotions to lead me and be honest with the now.

Thank you for all of the love you have shown our family.

11 comments:

Jill said...

There is no right thing to say, no magic words. I pray that you and Waverly, your husband and Oliver, are surrounded with an army of angels to help you through this

Anonymous said...

I will pray for peace and comfort for your family and that God sees fit to hear our prayers to give you the time you need. You and your family are in my thoughts daily

Kate said...

I am so sorry. I will pray for you and your sweet family.

lesley said...

I am so sorry to read all that has been going on recently. As a nurse, I will say that the most important thing is that Waverly remain as pain free as possible, no matter what is going on, even if it does affect her awareness level. I am so happy you like the palliative care team and I am so sorry for all that is coming at you right now. We can never be prepared ahead of time. It is a lot to process. Hang in there mama, you are doing a good job.

Kavita said...

Thinking about your family and praying for Waverly and hoping for the best. Please let me know if I can help in any way.
Kavita

Kavita said...

Thinking about your family and particularly Waverly, praying for her. Please let me know if I can do anything.
Kavita

Angie Bartos said...

Praying.

Anonymous said...

Praying tor sweet Waverly, and for peace for you and Matt. I wish I could take away just a piece of your pain, but know that Waverly has touched hearts and souls of people who have never met her. Kate

Krista Spradlin said...

Shannon, I am not sure what the right words are right now. It may not be the right thing to feel, but I am angry, so very angry with this brutal disease and the pain it brings your family and others like you. Prayers are a given. You all are always in our prayers. I will continue to pray for energy, grace and mercy.

Laura Darrow Davenport said...

Praying for your family and hoping that Waverly is met with comfort and relief from her current pain. I have followed you throughout this entire journey and have continued to pray that your family would be comforted.

Muriel said...

Hoping with all that Waverly's pain can be helped. Here is sending hugs to all of you. This is heartbreaking and why does this happen to such lovely children. I wish there were answers.