As the writer for Upper Providence Living, I have the pleasure of interviewing great people.
Here is the article I wrote for the December issue.
Gifts come in all shapes and sizes. They come as requests or sometimes surprises. They come wrapped, in words, or favors and sometimes they come in the most unexpected ways. For the Taylor family, they were unaware that the tragic news they were told on March 1, 2010 would serve as the greatest gift they could ever receive and share with so many.
Tricia McDonald Taylor met Michael Taylor at a bar in Conshohocken while watching an Eagles playoff game. They were sitting at a table across from one another. Trish recalls that “they were at a time in their lives when they didn’t want to meet anyone, but laughs, that is, of course, when you are most likely to meet someone.”
Two years later, in 2004 the couple married. Katherine (Kate) was born in 2006, Andrew in 2008, followed by Will in 2010, Jonathan (Jon) in 2012 and Lauren in 2014.
The Taylors have many stories to tell. Like any family, they can tell tales of mistakes, triumphs, highs and lows. The theme of their life is to view hardships as lessons to prepare you for the future. The Taylors hit rock-bottom, but came out stronger than they ever knew could be possible. This story is about a 7-year-old boy who arrived on March 2, 2010 and showed them the importance of will.
Trish is confident that she and Mike were being prepared their whole lives to be Will’s parents. Before Will was born, Trish tells that, “My goals were career focused. I loved my family, but never thought I could be a stay- at -home mom. I was always looking for the best thing, the next thing. Then, after becoming pregnant with Will, we both lost our jobs. With two kids and one on the way, health insurance and a mortgage, this was a daunting time.” This was just one example of how life can change in an instant and the beginning of the truth behind that cliché in their lives.
Trish explains that, “By having an internship at Children’s Miracle Network while in college, I was given the opportunity to work with kids who had some difficult stuff going on. Also, because I worked at a health insurance company, I was taught terms that I need to use now. God was getting me ready to be Will’s mom without me even realizing it.”
When Trish and Mike found out the sex of baby number 3, Trish had a name picked out, a name that would ultimately display such meaning in their lives. Trish loved the name William for multiple reasons. Her dad’s name was William, but also Trish liked a song by Martina McBride “God’s Will”. In the song, the artist mentions that the subject of her song doesn’t talk or walk well or do the things that other kids do. Those lyrics unfortunately foreshadowed the path they were about to travel. Those words would not define Will because from the beginning he proved that he was stronger than any diagnosis.
On Christmas in 2005, Mike concurred with her name choice by surprising Trish with an ornament engraved with the words “Merry Christmas, Mommy. Love, Baby Will.” Now her father’s name would be passed down and every day the family would be reminded about the importance of having determination.
At Trish’s 39 week doctor’s visit, she was told that the baby had an irregularly irregular heartbeat. Trish had an ultrasound and the doctor expressed “that he was very sorry, but there were tumors in the baby’s heart. You need to call your husband and the baby needs to be born via C-section tomorrow because we aren’t sure he will survive the birth.”
The night before the delivery, Trish and Mike spent a horrid 24 hours researching the predicted diagnosis, Tuberous Sclerosis (TS). “This is a rare disease that affects 1 in 6,000 live births. It impacts multiple organ systems. The things we read online were very scary. We read too much and what we read bashed every hope we had for our son. In retrospect, TS is very different now for newly diagnosed kids. Kids born with TS are privy to new medicines that can change outcomes. Some people can go through life and not know they have it and some people are impacted immediately. In Will’s case, it was a flip-flop in his DNA chain that replicated multiple times and affected his brain, heart, kidneys, and skin with begin tumors (tubers).”
On March 1st, Will’s grandfather William’s birthday, the Taylors found out that their baby had TS. For years, Will and his grandfather would be the best of friends. “My dad and Will were super close. I got to see a side of my dad that I had never seen before. He was a different level of gentle, loving and kind. When my dad died two years ago, Will lost his best friend.”
When they arrived at Phoenixville Hospital, they were told that Will would be sent to The Children’s Hospital of Philadelphia (CHOP) immediately following delivery. “We were coming from this world where we didn’t think like this. Our other kids went to the doctor for their checkups. We didn’t know what this meant.
After delivery, they transported Will and Mike to CHOP that night. After Trish was released from Phoenixville, she joined her newborn baby son and husband at CHOP. She is still haunted by one doctor’s apathetic perspective. A vulnerable Trish, who was filled with emotions, was in a shared hospital room when he publically spoke and communicated that “Will has a very severe case of TS. He has more than 50 benign tumors in his brain that will cause seizures and it is very severe.” She will never forget how trying this was to hear about her beautiful, perfect baby. These words of one would not serve as a life sentence for her son. There were bigger plans for this tiny force.
After spending months five days in the NICU, they were finally able to bring Will home. “I remember the ride home and being scared to death that we were taking the baby home because of his tumors and seizures. We questioned how we were going to be able to care for this sick baby. Thankfully, we were blessed with amazing support from our family, friends and the community. Everyone came together for us, but our life was now different. It was filled with specialists and therapists.”
When you have a child with a disability, you aren’t a born advocate. There are people along the way who naturally guide you on this journey. “There was a mom from the YMCA who had a son with lots of challenges. She gathered all of the information for Early Intervention, information about specialists and ways to navigate the system.” Moms of children with special needs serve as the guidebooks for other moms with children of special needs. “I hope I can be that person for someone someday. She helped me to get out and start moving forward again.”
The Taylors went from one hour of OT to hours of PT, Speech, Vision Therapy, Nursing Care, and Behavioral Therapy. “We appreciate people who have a big heart and put a lot of work into their careers, but if they don’t believe that Will can be what Will can be, they can’t be on our team. We want him surrounded by people who know that Will is going to be the best Will that he can be.”
At nine months old, while Mike and Trish were giving Will a bath, he had his first seizure. “Something was just wrong. When he had the seizure in the bathtub he was already on anti-seizure medication and behind developmentally. We knew this was critical.”
Trish clarifies that, “A population of people who have epilepsy respond to medicines, but Will is not one of them. At three years old he tried and failed ten different drugs. He was having 20 seizures a day and wearing a helmet to protect his head. He had a constant darkness in his eyes and was not developing. No drugs were working.”
Now they were forced to make a decision; one of the hardest decisions they would have to make. They elected to have brain surgery at New York University Langone Medical Center. In April of 2013, he began a series of five brain surgeries. Unfortunately, after the first two, he came out of anesthesia and was seizing again.
The Taylors had to now make another grueling choice. They needed to decide if they should allow the doctors to operate on the tumor that was sitting on the motor strip that controlled the right side of Will’s body. “He could lose operation of the right side of the body, but the doctors were positive that the surgery could successfully remove the tuber. We gave them permission to do the surgery. As a result of the surgery, he was left with hemiparesis on his right side.”
After surgery, they were transported to the Seashore House at CHOP where they would spend nine weeks. Trish would spend the days there, while Mike would spend the nights by Will’s side. In time, he learned to walk again for the third time. Despite countless hours of therapy that still exist today, he was left with no feeling in his right hand.
As Will got older, his developmental gaps began to widen and now has 14 different diagnoses that require nursing care at school and home. “He has Primary Immune Deficiency Disease which requires him to get weekly blood infusions that take two hours and could continue to have these for the rest of his life.”
In 2016, Will began to attend The Timothy School in Berwyn. Trish beams when sharing the impact the school has had on his life. “The Timothy School has given him as close to an individualized education as he can get. They believe in him there. At The Timothy School he is accepted. The school makes every child feel like they belong. He is with his own peers and he feels like one of them.That is a gift. Will is embraced and included, just like his siblings are at the schools they attend in the Spring-Ford School District.”
The Taylors have quite a team. Will has an amazing dad who is the best dad to Will and all of the kids. Marriage is hard, especially when you have a child with special needs, but Trish and Mike have an incredible connection. “A true family does what a family has to do. He also is surrounded by his four siblings. They are a gift to him, but he has made us all better.”
Will is also blessed to have a grandmother who has always believed in him. “She encourages Mike and Trish when they are dealing with the gravity of Will’s diagnoses. My mom always says that God has a purpose for him and that He has bigger things in store for Will. She has a gift for treating all ten grandchildren the same and gives her time to all of them so freely.”
Time is such a gift that they all appreciate. “Becoming a mom changes everything, but having a child with special needs helps us celebrate things that other people may not realize are worthy of celebration and nor would I at one point. We get ice cream cakes for a lot of things. Nothing should be taken for granted. Will has given us the ability to be thankful for so much.”
Will has a significant impact on his family .The love the kids have for one another is incredible. They are kind and compassionate. “Will’s siblings rise above the stuff that is embarrassing and are always proud of him. Andrew and Will play hockey together every day. This is always the highlight of Will’s day.”
Kate, Andrew, Jon and Lauren exhibit love, patience, peace, kindness, goodness and gentleness. They have watched their brother suffer. “The last seizure where we had to call 911, Kate waited on the side of the road in the middle of an ice storm while Jon put his head on Will’s chest and Andrew stood by to make sure everything was okay.”
Who knew a name could take on so many meanings? Despite the obstacles Will encounters, his strength, spirit, drive and willpower are mightier. “Will is happy every day. If Will can be happy every day, why can’t we all be happy every day? Will calls it as it is with his limited vocabulary. Will is true to Will. I have seen a side of my entire family that may have never existed if it weren’t for Will.”
Will arrived on March 2, 2010 and a grim diagnosis turned to hope. “His life is precious. I want Will to be happy, accepted and safe. I don’t know how long we will have Will with us, so I want him to enjoy life. Every day is a privilege for all of us.”
The Taylors do not have a simple life, but they have built a strong foundation that provides them strength to advocate for Will while focusing on meeting the individual needs of Kate, Andrew, Jon and Lauren with such thoughtfulness. Will, his army of siblings, mom, dad, and grandmother make our community a better place.
Trish one day desires to be a support to another mom of a child with special needs. Little does she know, she is that mom every day.