MPS III

In honor of MPS Awareness Day (May 15), I'm handing the blog over today to Shannon McNeil, a mother of two children diagnosed with MPS III, or San Filippo Syndrome--one in heaven now, and one still gracing this earth. Some of the McNeil family's story is included in my upcoming release, Refresh: Spiritual Nourishment for Parents of Children with Special Needs. But today, she's going to give us a more complete picture by sharing with us the talk she recently gave to a group of women at her church. I hope you'll take a few moments to hear her heart, below. (Don't miss the video at the end of this post, too!) Restraint by Shannon McNeil My name is Shannon McNeil. Our family has attended Restoration for a year. We typically sat in the last row of the church during the 11:00 service to accommodate my daughter’s wheelchair. Five months ago we moved forward a few rows. In 2006 we were a budding family with the entire world open to us. A sweet spirited 3 year old girl and a bouncing baby boy. My husband had recently joined the Foreign Service and we were off to Chennai India for our first tour. Our first roadblock came when our son, Oliver, failed his newborn hearing test. A month later at 6 weeks of age he was outfitted with hearing aids. And thanks to his audiologist’s expert ear, our daughter, Waverly, was also diagnosed with a hearing loss. Another pair of hearing aids was purchased. And I grieved. Two children with hearing impairments and I felt ill equipped to deal with it. Our world became smaller and scarier. Days later our assignment to Chennai was pulled and the kids were declared medically ineligible to travel to many parts of the world. Our dream of being world wide available and ready to explore as a family was denied. We were offered London. They had good speech therapy services and audiological care that our kids needed. I was even able to find a preschool for hearing impaired children for Waverly. A little glimmer of light that the entire world wasn’t closed off, just parts. We could still dream, explore and flourish. Within a few months, we were advised by Waverly’s teachers and therapists to consult a pediatric neurologist. They saw more than simply a hearing impairment. Months of MRIs, blood work-ups, genetics consults and a flight back to the US culminated in a horrible diagnosis. Waverly had a rare neurodegenerative disease called Mucopolysaccharidosis type 3 or Sanfilippo Syndrome.  To get a bit medical on you: ***Sanfilippo Syndrome is characterized by a missing enzyme. This particular enzyme breaks down a specific sugar molecule. Since it is not broken down, it builds up throughout the body and especially in the brain. Kids typically develop normally for the first few years and then begin to plateau, before losing all skills. Eventually they lose the ability to talk, walk and swallow.***  The neurologists told us there was no cure, no treatment, some clinical trials were being talked about. They advised us to enjoy the time we were given and make memories. I felt our world grow ever smaller with the words “rare fatal disorder.” They then mentioned having Oliver tested. One month later on the streets of London I received a phone call that Oliver also had Sanfilippo. Our world grew darker and smaller once again. Overwhelmed with the future we curtailed from the UK and made a home in northern Virginia. The kids were declared medically ineligible to travel overseas at all with the State Department. Sanfilippo took more of our freedom, our dreams and would eventually take our children. We hunkered down in our little Vienna apartment. Matt worked. I gave up any hope of a career or fulfilling my dream of returning to school for an advanced degree. Waverly and Oliver’s care took all of my time. Managing insurance calls, therapy sessions, doctor appointments, school runs, IEP meetings. Waverly was growing more and more different from her peers. Play dates were no longer possible, church child care couldn’t handle her, going out grew difficult.  I became very angry. Angry at people who would stare or avoid making eye contact with us. Angry that our dreams were no longer possible and that Sanfilippo was going to restrain our life. I also became very jealous. Jealous of all the families who dodged this genetic mutation bullet. I fought against the restraints for many years, closing myself off in a desperate act of protecting the kids and myself. I only saw limitations and dead ends. And then I slowly began to embrace our circumstances. Waverly & Oliver have so much to offer the world around them. They ooze grace and kindness. They deserve all that we are able to provide within the constraints of accessibility, safety, and what brings them joy. We may have limits, but we can still thrive within them. In the 8 years since the kids’ were diagnosed, I have been asked to give up things. Career, education, choice of where to live, the option of having more children. Yet I no longer see those things as a sacrifice. I have been given the gift of mothering two amazing children who have changed me to my core, who have had more of an impact on this world than most. This is not to say that I no longer wish life were different. I would give my life to stop Waverly & Oliver’s suffering. I still scream at God and at times it’s my only way of communicating because rage is my sole emotion. Jealousy creeps in almost daily. In II Corinthians 1:3-4 Paul wrote, 3 “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, 4 who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.” By being limited I was actually opened up to so much more. Grace. Love. Acceptance. Kindness. Joy. Humility. Patience. And also Sorrow. Grief. Pain. Loss.           Five months ago I laid next to Waverly as she took her final breath. All of those years of anticipating grief could not prepare me for her death.  I was able to be there from the beginning to the end of Waverly’s beautiful life. And I will have the honor of doing the same for Oliver.  The above was reposted by permission from the McNeil Family blog.