special needs

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.   

As we've been talking about what this month was like in Gettysburg in 1863, I ran across this blog post which originally was published in 2013, just a few weeks after Widow of Gettysburg released. It's worth sharing again today. (Some of you may remember that our guest blogger, Kimberly Drew, is now my co-author for a new devotional book for parents of children with special needs children, too!) ___________________________ Today we have special guest blogger Kimberly Drew sharing her heart with us. Kimberly recently finished reading my latest novel, Widow of Gettysburg, and found that several of the concepts discussed between the characters related to her own life as the parent of a child with special needs. She says. . . There were several quotes throughout the book that grabbed my attention, but this one in particular has been running through my mind today. “Where we think there is wasteland, God will bring new life.” [[{"type":"media", "view_mode":"media_large", "fid":"954", "attributes":{"class":"media-image aligncenter size-full wp-image-3377", "typeof":"foaf:Image", "style":"", "width":"480", "height":"600", "alt":"NewLife2"}}]] As the parent of a child with multiple handicaps, there have been seasons of my life where I felt like I was living in, and surrounded by a wasteland.  Doctor’s appointments, therapies, insurance battles, isolation, grief, and fear sucked every last bit of energy from my spirit.  I was recalling with my mother-in-law just this morning that during the early years of Abbey’s diagnosis, I felt like I would never get out of the emotional wasteland I was living in.   I couldn’t see relief in the future, I couldn’t feel God’s presence (even though it was always there), and uncertainty seemed to be overwhelming my ability to grasp and deal with our situation. Perhaps while you’re reading this, you can relate to one or all of those feelings.  I want to encourage you to never forget that God is in the business of making all things beautiful in His time.  If you had told me eleven years ago that there would come a time in my life that I would thank God for allowing Abbey to become disabled, I never would have believed you.  I barely believe it now!  But it’s true.  Somewhere deep in my heart, God has tenderly spoken kindness and mercy over my pain.  Where there once was a wasteland of isolation, now there are new and invaluable relationships.  Where fear of the unknown robbed my joy, my trust and faith in His plan allows me to laugh freely and often as a part of my day.  The horizon of my heart was once a barren and empty black hole of grief, and today it is so very full of the lessons I’ve learned about God’s character and compassion for me. Isn’t it amazing that while I was looking around and feeling and finding nothing, deep underneath the layers of my heart God was planting something new? There beneath the cracks in my faith, a tiny seed of hope was growing.  This seed needed deep roots to withstand its environment.  Out of the wasteland, God brought new life.  This life is more transparent, vulnerable, and authentic than it ever could have been if someone had planted it in the lush and fertile soil of ease. Now it's your turn. If you'd feel comfortable sharing, how has God brought new life out of what seemed like a wasteland in your own life?

Today, for International MPS Awareness Day, I'm handing the blog over to a mother whose daughter Waverly was diagnosed with the disease seven years ago. Shannon McNeil and her husband Matt learned, not much later, that their son Oliver, also, has the same form of MPS. Waverly and Oliver have MPS IIIA, or Sanfilippo Syndrome, a recessive autosomal genetic disease. Children with Sanfilippo Syndrome are missing an essential enzyme needed to breakdown and dispose of long sugar chains in the body called mucopolysaccharides. also known as GAGs. Because these sugar chains cannot be broken down and disposed of they accumulate in the cells causing progressive damage. Babies and young children with Sanfilippo Syndrome appear normal, but symptoms begin to appear with age as more and GAGs build up in the cells of the body. There are 3 stages to the disease. Stage 1 the child begins to lag behind peers and begins to display difficult behaviors. Stage 2 the child losing his/her language, becomes hyperactive, chews on everything, and has sleeping difficulties. Stage 3 the child slows down, becomes dependant for all mobility and loses the ability to chew/swallow. There is no treatment or cure for Sanfilippo. Life expectancy varies. And now, I invite Shannon to share from her heart a post she had written on March 20 this year.   7 Years Today is the anniversary of Waverly's diagnosis of Sanfilippo Syndrome. Seven years. Seven. Years. I cannot believe so much time has passed since we were handed a few printouts and left with very little hope. Yet time is a funny thing and trying to remember life without the specter of Sanfilippo is growing more difficult. I struggle to remember the levity of living without the weight of a terminal diagnosis over our family. Returning in my mind to that day sitting at CHoP, I cannot believe the way a brief meeting with doctors can be so transformative. I walked into the room as one person and left very different. It is so clear in my mind's eye sitting in the waiting room with Matt & Waverly for the test results. Following the resident into an exam room and looking out the windows. Seeing the neurologist come in with file in hand and a solemn look on his face. And then it happened.   Your child is dying. No cure. No treatment. Her little brother may also have it.   Waverly was off to the side playing with the resident, who did a beautiful job keeping Wavey entertained so we could absorb the news. Smiles and giggles. Tears in the resident's eyes.   I remember wanting to scream. But tears came instead in waves of breaking down and then pulling myself together. Matt looked stunned.   They wanted to take a skin biopsy to determine what type she had. She still has a tiny perfect circle of a scar on her upper arm. A memento of that day.   Driving home and her little voice started singing "If You're Happy And You Know It" from the backseat. Blissfully ignorant of the horrible hand she was dealt.   In that moment I thought life was going to be horrible. That pain and suffering would dominate our children's short lives. And  while they have had a difficult road with much more pain ahead, they are happy joyful kids.   Seven years is a long time for perspectives to shift. Waverly may no longer speak. She cannot eat. She can walk very short distances with full support, but is otherwise confined to a wheelchair. She is incontinent and needs help with all aspects of her care. However when she smiles she lights up a room. Her giggles are contagious. She will always reach for your hand and look deep into your eyes.   We find the little joys and delight in them.   Sanfilippo Syndrome is an awful disease that is slowly taking my children away. 7 years ago, I was capable of only focusing in on their early death. All of these years later I am able to focus on the moment. The waves of sadness come in slower intervals now. Although the depth of love I have for Waverly & Oliver is more substantial, so when the waves come they knock me around a bit more. I am stronger, more compassionate, more tolerant, more patient.   I would take Sanfilippo Syndrome away from them if I could. I would love to know what fantastic little beings they would be without the trappings of the disease. I wish they didn't have to experience daily pain and frustration. I grieve thinking about the way things should be. But I have learned to embrace the moment, celebrate the small things and be thankful for today. I am honored to be their mommy. My friends who no longer have their children beside them remind me to relish every second I am given with Wavey & Ollie.   Thank you so much, Shannon, giving us this heartfelt glimpse into your family! Praying for you, and praying for a cure. Visit the McNeil Family blog here. *You may also be interested in: Waves of Inspiration for a Little Girl's Birthday  

[[{"type":"media", "view_mode":"media_large", "fid":"1103", "attributes":{"class":"media-image wp-image-2526 size-full", "typeof":"foaf:Image", "style":"", "width":"600", "height":"400", "alt":"waveyandmatt"}}]] Photo courtesy of Megan Rund Photography   A very special little girl named Waverly is going to celebrate her eleventh birthday on Saturday, November 15, and her parents have invited you to help celebrate. They aren't asking for cards, or money, or balloons or gifts or cupcakes. All they're asking for is a little kindness--and not even toward them. Before I explain, allow me to introduce you to Matt and Shannon McNeil. I went to college with them, but since graduation, their lives took a turn no one could have imagined: For more about their story, listen to this piece on the McNeil family which aired on NPR: Northern Virginia Father Writes His Way to Hope. Last year, for Waverly's tenth birthday, she received more than one thousand cards! This year, the McNeils have decided to skip the cards and ask for kindness instead. From the Wavey Inspires Facebook page: [[{"type":"media", "view_mode":"media_large", "fid":"1104", "attributes":{"class":"media-image wp-image-2528 size-medium", "typeof":"foaf:Image", "style":"", "width":"300", "height":"300", "alt":"waveynotsmiling"}}]] Photo courtesy of Megan Rund Photography   For most parents, celebrating a child's birthday is a day of joy and laughter. The McNeils strive to make every day one of celebration for Waverly, as she has a genetic condition that has a lifespan of 12-18 years. As Waverly gets closer to that milestone, her friends and family lift her up in celebration. In an effort to honor her on her special day, we are asking our friends to help us. We would like each of you to reach out to a family in your neighborhood, school, church, community who has a child with special needs. **Introduce yourself. Have your child make them a card. Buy a cup of coffee or a gift card.** Having a child with special needs can feel very isolating for some families. A smile and a friendly gesture can mean the world to them. We would love to see "Waves of Inclusion" across the world. Shannon adds: "If you have a good idea, please share it on the Wavey Inspires FB page. We'd love to hear stories of your kindness to others; remember, it's not bragging, it's inspiring!!!" [[{"type":"media", "view_mode":"media_large", "fid":"1105", "attributes":{"class":"media-image alignleft wp-image-2529 size-medium", "typeof":"foaf:Image", "style":"", "width":"300", "height":"300", "alt":"waveysmiles"}}]] Friends, let's do this. The McNeils aren't asking us to donate money to find a cure for San Filippo Syndrome. They aren't even asking us to buy copies of Matt's children's book, proceeds of which go toward research for a cure. (But I will. Buy Matt's book, The Strange Tale of Ben Beesley. It's part memoir, part allegory, all adventure. But in this tale, Waverly and Oliver get cured.) Let's be part of the Wave of Inclusion. There are families struggling with special needs in our communities. Let's be kind. Let's make sure they know they aren't as alone as they feel. Let's bring smiles to their faces, and then tell Wavey and her family about it so they can smile, too. Either post on their Facebook page, or if you don't do Facebook, leave a comment here on this blog post and I'll make sure they get the message! Shannon and Matt are looking for pieces of beauty and grace on this journey with their children. Let's serve it up. [[{"type":"media", "view_mode":"media_large", "fid":"1106", "attributes":{"class":"media-image aligncenter size-full wp-image-2527", "typeof":"foaf:Image", "style":"", "width":"524", "height":"350", "alt":"waveyandsoldier"}}]] #WaveyInspires! If you do nothing else, please share this blog post using the buttons below. If you are the parent of a child with special needs, please share in the comments below what a sort of gesture of kindness would be welcome to your family. Visit the McNeil Family blog here.