Powered by my child to Advocate for Families Now: My testimony in support of S1138
On June 10, I joined a small group of pediatric palliative care professionals and advocates to testify before the State on behalf of providing comprehensive palliative care to ALL qualifying families in Massachusetts.
I really had no idea what I was really agreeing to or what I was going to say. I spent my 20’s walking around Boston, yet never once had I walked up the steps of the Capital building on Beacon Hill. As I hurried toward the shinning gold building at the top of the hill, I was struck by the distance I had travelled. My time in this city was once full of impulse, art, music, and the thrill of the experience— the naive bliss of youth. Most of the time I don’t see myself as much different from that girl, but today that girl felt like a stranger. Today I was here on a mission, with purpose and conviction buttoned up and business casual.
I squeezed my way into the packed room already in session and spent most of the day crouched down on the floor, amongst the other panelists, journalists and activists there to present their particular issues. Panel after panel rose to the front of the room to present their perspective on some of the most contentious public health issues they hoped to regulate: radon in schools, the lead paint that still covers our cities and poisons our children, regulation of abortion practice and crisis health centers, and, last but not least, comprehensive access to pediatric palliative care for qualifying families.
Everyone was given 3 minutes to testify followed by a period of questioning. I found each person’s testimony moving and persuasive. We must fix these issues, I thought. For example, increasing regulation on lead paint in homes where children live seemed like a no brainer to me. A pediatrician testified about what lead poisoning looks like for the dozens of patients he encounters each year. “This is an easy fix,” I thought, until my local Worcester representative questioned the panel: “And how do you propose we pay for the de-leading in an already struggling housing market? If this regulation is enacted without a clear financial plan, the only result we will see is that landlords will no longer rent to families.” While there are many laws currently in place to prevent this type of discrimination against families, her point was valid. Each cause and plight, in the end, was reduced to one converging point: dollars and cents.
I knew then that my testimony had to do two things:
(1) It had to illustrate, through my own story with my son, the real world need of palliative care in our communities and connect with people who likely have never had to even think about the realities associated with parenting a child with a life limiting illness.
(2) It had to illustrate the far-reaching cost of NOT providing these services to families in need.
My 3 minutes —
Hello. My name is Kerri Padgett.
My son Kai was diagnosed with an inoperable brain tumor at 8 months old. We were lucky to be living here in Massachusetts, within a few hours drive of one of the leading pediatric cancer centers in the country. During Kai’s 16 months of treatment there we received wonderful medical and psychosocial support surrounding his curative treatment -which included weekly chemotherapy, PT, OT, speech & feeding, orientation & mobility, the list goes on.
Kai was expected to be a long-term survivor. We were also lucky to be introduced to a community based palliative care program early in his diagnosis. I say lucky for a few reasons. Many of our peers, cancer families whose children had a similar prognosis to Kai’s, were not offered these supportive services until weeks before their child’s death, if at all.
Imagine if you would, your child is diagnosed with cancer and no one is talking to you about the possibility that they may not survive. No one is listening when week after week you report that he is loosing function or cannot eat or play as he once did. “He will make up for it once the treatment is over.” We were told. I assure you, in the middle of the night, when all is quiet; the thoughts of what COULD happen will cross your mind.
As Kai’s curative treatment was failing him and his daily function was decreasing as a result, it was our palliative specialists that helped me navigate the thoughts I was having that no one else wanted to hear– I think my son is dying.
When palliative care showed up at our door all those months earlier I had no idea what the words palliative care meant or why we needed it. What I did know is that whoever they were this social worker was willing to talk with me about my late night fears, the things I was afraid to say out loud to anyone else. I knew they provided a team of specialists, in our home, who were there to provide comfort and engagement for Kai on his sickest days. Some of my most cherished memories are those moments of watching him sing to the music or relax into his massage, at a time when he mostly slept and we hardly left the house.
We were lucky to have a team focused on Kai’s quality of life in that moment, as well as the long-term resiliency of each member of our family. I would later learn this is palliative care.
Without this support during Kai’s life, I would not be sitting in front of you today. Our palliative providers encouraged us to find meaning in each day. They saw what Kai could do and they helped me to learn the coping skills I would need for what was to come.
Kai died 2 1/2 years ago just after his second birthday. His last months were full of life and memories thanks to our palliative care team. Through the support we received at home I was able to advocate for our wishes and make thoughtful care decisions for Kai’s life and death. Because of this support I now, despite the outcome, I live with minimal regret.
After Kai’s death I went back to school and now work full time in palliative care to ensure that all families receive the support they need during the most trying times of their lives.
I am here today to urge you to support this initiative. Palliative care is not a service that can withstand a waitlist due to budget. A waitlist for these families can result in services becoming available too little too late. A lack of services during this critical time can result in long lasting emotional, social and economic affects for the entire family.
Please help support this bill and bring these vital services to the families who need them today.
Thankfully, any gaps in my testimony were filled by the amazing panel of advocates who sat beside me that day. People who have dedicated their lives to fighting for families like mine, who read aloud the moving written testimony from families currently in the program and some from those who are waiting. Thankfully my fellow panelists were well versed in the facts and figures, the costs and benefits, the politics, that I am just unable to absorb.
It was an inspiring and invigorating day that allowed me to bring Kai front and center. Each time I am asked to lobby or advocate or share our story to help others I approach the opportunity as if it is my job. I am thankful that Kai is the center of the work I do and am grateful to have the opportunity to make his story and these issues my life’s work.
In the few years that have passed, I have learned how to carry Kai with me while also separating my personal story just enough to keep it from completely engulfing my professional life. It is a skill I resisted shortly after his death, but a skill that has gradually become another way of holding him close, sometimes just for me. Still, each time I am passed that microphone and begin to speak those words— “My name is Kerri. My son Kai was diagnosed with an inoperable brain tumor at 8 months old.”—no matter how many times I say it, there is that moment where it all sneaks up on me, where I have to swallow hard to fight back the tears and I am reminded that this is more than my life’s work, this is my life.