Meet the McNeil Family

Meet the McNeil Family

Friday, April 14, 2017

The Beep of the Pump


The time has come for us to utilize Oliver's g-tube for more than just medication. After making minor adjustments for over a year, we need to make some major changes. I have been prepared with all of the equipment and prescriptions submitted to insurance for food, but nothing prepares you for this.

I have been through it already with Waverly. It was obvious with her. Feeding her was taking hours and she was losing weight. Oliver isn't having those symptoms, but he is experiencing a wet cough after each meal. A sign that he isn't fully clearing his esophagus of food and some may have entered his trachea. It is also a obvious sign of high aspiration risk.

He can certainly still eat by mouth, but we are altering textures and consistencies. And we have introduced a pouch of Real Food Blends as his dinner each night. He tends to be tired by the end of the day, which means his swallowing muscles are also fatigued. I used muscle memory last night as I prepped the pump and filled the bag with his food. The sounds of the pump were both musical and alarming. I was taken back moments with Waverly, nourishing her failing body and thankful for a way to keep her satiated. And I was startled to the present, knowing I am doing them same thing for Oliver now.

Tuesday, April 11, 2017

Numbness Has Faded


Matt and I were able to fly to Orlando last weekend for Blair's funeral. With the help from family and friends, we left Oliver in their care and were able to spend a few days away. This is the third funeral we have attended since Waverly's. The first two were within weeks of hers and looking back I have realized how numb I must have been. I was in a daze, grieving with my friends but unable to fully feel what was happening. I felt this one.

It was a beautiful service. Everyone was asked to wear purple and the chapel was filled with purple hued guests supporting the Chapin family. Blair touched so many lives and she was deeply loved. Her 13 year old sister spoke eloquently about her big sister, her inspiration. And her dad gave a eulogy that made us all laugh, smile, and cry. It was perfection.

Sorrow and Joy continue to be the theme of my journey. Vacillating between tears and laughs throughout the day. I mourn the loss of Blair. And I ache for my friend, Susan, as she navigates life without one of her children. I now know grief and I hate knowing my friend has to walk this path. Yet we grieve because we love.

I thought of Waverly. I thought of her as I saw similarities in Blair's photos - the same chubby cheeks and soulful eyes. I thought of her when Blackbird was played during the slide show, an homage to Wavey. I remember walking down the aisle behind the priests, ready for the service to begin. And I remember the painful walk out of the church, knowing the funeral was over. The last event I had planned for Waverly was complete. Life continues on and I have to adapt to the after.

Tuesday, April 4, 2017

Blair

I met Blair in December of 2009. It was a last minute decision to attend the MPS Conference held in Orlando. Waverly and I flew down on our own, leaving the boys behind to bond. Blair's mom, Susan, organized all of the childcare for the conference. She had friends and family members volunteer to help with all of the children, so the parents could be attentive to the many speakers. I was nervous about leaving a very rambunctious Wavey with a stranger, but Susan assigned one of her friends to be Wavey's buddy. They were a perfect match.

Susan immediately saw familiarity in Waverly. She told me how much she reminded her of her own daughter, Blair. I remember meeting Blair and see the similarity. Blair lit up the room with her smile and had an infectious laugh. She bounced around with such confidence and I was amazed at her gross motor skills. She was also dressed like Waverly, with a dress from one of our favorite shops. Susan and I shared a similar philosophy of always dressing our girls in lovely outfits and having their hair done up nicely.

Over the years, we have had the opportunity to meet up with Chapin family numerous times. They live in Orlando. Since Disney World has always been a special place for our family, we found ourselves passing through their hometown every year. This provided us the chance to explore the parks with them or being welcomed into their home.

I remember meeting Susan and Blair at Universal Studios. Blair loved Barney. I mean LOVED him. They were still hosting a live Barney show at Universal, so we took the kids. Watching Blair watch Barney was like watching those videos of young women seeing the Beatles. She was ecstatic. A smile stretched out across her face. Her legs kicking and feet flailing. Clapping and shrieking with delight. It was pure happiness. I wanted to bottle it.

Years later we met up at Hollywood Studios. We stood in a very long line to meet Mickey Mouse in his Fantasia gear. A very kind cast member pulled us out of the line and allowed the girls early access to the big guy. We got them out of their chairs, straightened their ear hats, and let them at him. Hugs abounded and lots of giggling.

Waverly & Blair were buddies. They instinctively knew one another, reaching for the other's hand.

The last time I saw Blair was after Waverly had passed away. We went to the Chapins for dinner. I loved sitting next to Blair, stroking her hair and holding her soft hand. It provided a small reminder of Waverly. And before I left I remember kneeling down and hugging her. She was finished with the hug before I was ready to let go. Tears fell as I touched her incredibly soft hair. I didn't want to leave the memory of Waverly which she provided. However I also didn't want to leave her.

When we say goodbye to our precious friends with Sanfilippo, there is always the threat that this may be the last time. We hold the hug a bit longer. We gaze into their eyes and say we love them. We whisper a prayer that they would be blessed beyond measure and always feel loved.

Our dear friend Blair passed away this morning. Her parents are mourning. Her little sister is grieving. I feel helpless watching from afar. 

Blair inspired. Her parents loved her from beginning to end. Her life was filled with love and adventure. Countless people have been changed by knowing her. She made a difference in this world.

Please pray for Blair's family.

Blair & Waverly 2015