Sharing Family Stories – Theresa

Select a story below to read more about each individual.

I remember we asked “why” for about fifteen minutes the night she was born. Then we thought about our first child, our daughter, in the NICU all by herself. From that moment on it was not about us; it was about Theresa.

I recall the first time I went to the market with my bundle of joy. Leaving the house was like packing for the beach. I just wanted to go to the food store, but I would not just need a diaper bag. I would need a “go bag” (extra trach, suction catheters, suction machine, gloves, scissors, etc.). We still went and I walked up and down every aisle on purpose. I was a proud parent of a beautiful, medically fragile baby girl. We went to the check out and I thought nothing of suctioning her because she sounded “junky”. The lady behind me asked, “Should she be out in public?” The cashier, who knew us well, replied, “Should you?”

In the beginning, we had no idea of the magnitude of care that Theresa would require. After twenty some surgeries, braces, casts, a tracheostomy twice, feeding tubes, therapy, home care nurses, nurses to go to school with her, lack of sleep, financial woes, caring for another child and ourselves; we believe Theresa blessed us by changing our perspective. She gave us so many gifts. Most of all, she chose us to be her parents.

While in the PICU to have a trach placed again at the age of 7, after having one for almost 11 months as an infant, we thought her neurological status would plateau if she had a more stable airway. It did not. A wonderful doctor, who performed her first tracheostomy as well, stood in the doorway during rounds was in disbelief that this was the same child who fought to go home from the NICU so many years before.

My husband and I are so grateful to still be together. To endure through a child who was medically fragile from birth was a miracle, but to continue to endure through the loss of our angel seems unfathomable. We continue to “be there” for each other as we endure our waves of grief. Often, there are no words; just tears and memories.

We look at Theresa’s brother, Johnny, and think how can he be so “good”? He was born into the chronic care of his medically fragile sister. He rallied with us during good times and worried with us when the road was rough. He knew near the end that she was different. Her affect was different, lots of seizures; she wasn’t doing her usual things. More equipment came into the house. His highlight of the week was when the DME company made her liquid oxygen delivery. He would say, “Mommy, that is so cool.” He never asked “why”. Some how he “got it” at 4 years old. He was included in everything about her. He was her protector. We had wonderful home care nurses who kept us sane and helped keep our family unit together. After awhile everyone who took care of Theresa became part of our “family”. Now we revel at the magnitude of people Theresa connected. None of us will ever be the same

I myself am an RN. I knew how to navigate the system. We got 2nd and 3rd opinions, traveled to specialty hospitals and saw many, many specialists. Without the cooperation and support of our primary pediatrician, my husband and I would have definitely lost our minds. Theresa’s pediatrician made a house call when she came home from CHOP after a 59 day stay in the NICU. He helped coordinate a document to keep track of her diagnosis, surgical procedures, treatments, therapies and testing. There was almost constant communication. He always came through for Theresa. At the end, even he was not ready to let go until he made a house call after hospice was in place. At that point he finally realized he DID do everything and that she was finally at peace with her body. These general pediatricians, who are WILLING to care for these children need to be well-supported and have the resources so needed for that child.

Theresa’s symptoms and discomfort were escalating. She was SO agitated, seizure activity was increasing. She was incontinent after being potty-trained. She had not slept well in days. We called the neurologist and set out for the ER again; Theresa, her home care nurse that day, myself and all of her equipment /supplies in tow. After a brief appt, he wrote a prescription for a sleeping medication. Looking at me he said, “Maybe you’ll get some sleep.” He didn’t get it. It wasn’t about me!!!!!!! On the way out of the ER Theresa was very lethargic laying in a wagon. She looked at me and signed, “Mommy, all done, no more.” That was the last trip to the hospital. Theresa had lost all of her spoken language, but still retained the sign language she learned when she was trached the first time. Theresa spoke volumes without uttering a word.

Our family was on vacation about a year before our angel left us. We knew things weren’t good. We had known for a long time that she would never be independent. We grieved along the way; for so many things. We had celebrated so many gains only to watch things slip away from our little fighter. Then we would just pray for a day with no seizures. It’s a life changing event; loosing your child. Things don’t get better. It’s just “different”.

Right now, I believe I am where I am supposed to be. Who better to advocate for pediatric palliative and hospice care than a mom who is a nurse and works in the fields of pediatric home care and hospice? Theresa taught me, “Life brings you certain places”. This is where I need to be. To help others navigate this journey. I say it’s helping others, but it’s really cathartic for me. These children and their families are in need of a better delivery of care. From the moment of diagnosis, there should be a cascade of services/resources/networking, like a safety net, to support, educate and care for children with life-limiting or life-threatening conditions.