The tapestry of the life of a medically complex family

Archive for the ‘LOSS’ Category

The Day Before Again

Originally I published this piece the day before my friend’s son’s first birthday after his death. This week has been one of tremendous loss in my community of friends and another friend is trying to get through a 10th birthday- that isn’t. My heart is still touched by these many children. Here is my message to E’s Mom:

SO many posts are running through my head but the one I need to write TODAY is this one- because tomorrow I can’t say all that needs to be said today.

Today is Tuesday. Today is just another day. Today is the day before the 5th birthday of a child of a wonderful friend of mine. Today should be a day for last minute preparations, baking, decorating, stuffing gift bags… but it’s not. Because my friend’s child had a complex medical condition and he died last fall. He is dead. People can say the ugly words religions use to describe this, but saying “angel”, “heaven”, “whole again”, “in the light”, NONE of these things fill the emptiness in my friend’s arms, the ache in her heart, the agony she is experiencing as tomorrow approaches. Tomorrow she faces another “first” in the list of events after the death of a child- his first birthday on which he will not age, he will not enjoy candles and cake with she and his younger brother, he will not… anything. He no longer exists in the physical realm we experience on Earth. It SUCKS. And I am angry at the Universe that so many of my friends have to, or will, experience this pain.

I want to remind her that tomorrow is no different- it is not special in its difference from each and every day- every painful day without her son. It is holding her now in a state of terror, fear that tomorrow will bring the collapse she has spent all these months fighting. That does not make tomorrow more special than any day this week, or last week, or last month, or Christmas or any other day. Tomorrow will come, and the searing pain and agony of his loss will be great, but not as great as that first day, that first moment of knowing and not being able to bring him back. I want her to know that she survived the worst on that day, that she has the strength to face and get through tomorrow because she has already survived the worst. She has already committed to continuing, to thriving, to supporting her other son to thrive, as the son who has died would want. She is so strong- although she is feeling as if a drop of water, a shift in the breeze, might be all it takes to break her. She is strong and she doesn’t need to be- because we are here to help hold her when the journey knocks her down.

I want her to know, and to feel, that she is loved and supported and right and just on her trail through the perils of the loss of a child. What I want to do is go to her; to bring cake, to bring candles, to bring wine, and to sit and hold hands and hug and cry and laugh and remember the beacon her child shared with the world for his short 4.5 years. I want to celebrate the gift that was her child. I want her agony to soothe, her memories of joy to once again be strong. I want some of the moments she experiences to be filled with peace. Please know we love you and will be celebrating the life of our special friend tomorrow.

In Memorium


Living this complex medical life, a family comes across others facing similar challenges and bonds with them over the shared experiences. The community formed is one of mutual respect and support, of celebrating the little triumphs each of our children experiences. The down side is: we grow to know and love these children & families & we experience their loss along with them when one occurs. There are weeks in our complex medical community, where children end up inpatient who were recently doing well or multiple children die on several days.

In 5 years living this complex medical life, the losses have been significant. There is never a time when the death of one of our community’s children is an easy loss. Some of the children and families were not well known to us when their child died; others became fast friends, people who you meet through social media but one day get to know personally as they come to town for a procedure or second opinion. 9 months ago today, one of my “fast friends” suffered the loss of her 4 year old child- undiagnosed, beautiful, cherished. She is in my thoughts and we connect nearly every day.

I try to be what support I can, knowing that there is nothing I can say or do to ease the emptiness she  feels in her heart for her son. What I can and DO do is ask how the day is going, wish her some peace to dull the ache for a few moments, talk to her about her son and share with her my memories of him. Listening and remembering are never over-rated.

Yesterday, to honor Mason’s birthday, my kids decorated rocks I had collected on Martha’s Vineyard during a ‘pre-kids’ vacation. Each of my children wrote Mason’s name and drew something they thought he would like as a 5-year-old. My son drew a fire-fighting helicopter with Mason as the pilot. My youngest drew a birthday party with cake, balloons & all the fixings. My older daughter drew hearts and stars as symbols of love and light in “The Next Place”, where they talk about their friends being, altogether, well and happy.

We took these rocks and several smaller rocks with the names of children who have died in the past, as well as one who died yesterday, and traveled to the beach to cast them off into the ocean. With each stone, we said the child or children’s names. My kids threw them as deep into the surf as they could manage. They yelled: Happy Birthday, Mason! and waved as the surf crashed over their messages and carried the rocks off. It was a bittersweet trip to the beach for us but a wonderful way to honor the memory of friends. We will wish for a day when there are no more stones to cast. Yet everyday, we will remember.

Happy birthday free of struggle, Mason!

A Parallel Life

My family has lived in New England for multiple generations. My Mom’s family was originally from New Jersey but even her sister moved to New England after her parents died. My Father’s family lived back and forth between a few of the neighboring states here, but always New England after their family arrived in the US during the Potato Famine.

Most of my family, including first cousins, live within 250 miles of Boston, MA. Of 12 first cousins, only 2 live outside this region. There are frequent family get-togethers & the children of my sisters & cousins know each other well from frequent connecting at these gatherings. Well, all children but mine.

Because of my children’s health challenges & susceptibility to illness, we rarely get together with my family members- even those who live 10 minutes away. My nieces and nephews attend schools and gymnastics classes and … birthday parties. [scandalous!] These outings are a part of childhood for most children the US over- but my kids catch everything [by "everything": they caught Scarlet Fever after attending a RedSox game last June- yes, 2011, not 1906...]. To keep healthy, we bow out of every family gathering when one kid is sick- or ANY relative is ill or feels like an illness is coming on.

When my kids came home, I thought my family was ready to welcome them with open arms. We talked of sharing dinners, playing in back yards, walking along our local bike path… Then my kids seemed a whole lot sicker than my family had prepared for… There were more needs, more medical treatments, more emergency room visits and in-patient stays. One relative even hangs up when I call from the ER- treating each of our emergency trips as tho they are “attention-seeking” vacations. Sometimes you want to just nod & say: “Yeah. My kids are checking in to the Club Med floor here at Children’s…” I live a parallel life with my family- nearby, following along, but never quite in the same place.


Today= agony. Today we say goodbye to the best nurse to grace the field of homecare. She entered our lives while my twins were growing into toddlerhood. She brought something very rare to the table for our family: SKILL & EXPERIENCE.
Skill meaning not like “I took the agency’s trach class & put a trach into a rubber doll. ” SKILL in listening to the sounds of the lungs if an ex-preemie and knowing when those sounds are indicating a change that warrants further medical assessment/intervention. SKILL in communicating her observations to a parent and/or other medical personnel. SKILL in knowing how to replace a trach that is dislodged. SKILL in managing emergency situations in the absence of direct MD oversight. SKILL in providing pro-active intervention to maintain a child in a less restrictive medical environment or at home.

Not “experience” like “I’ve been a nurse for 20yrs working in a nursing home.” EXPERIENCE like: I’m a nurse at the best children’s hospital in the northeast, work on a complex care floor & have dealt with many children with trachs & been responsible for their direct, skilled care. EXPERIENCE working in an environment respectful of parents- knowing the parent has value to bring to the table when it comes to their child’s care. EXPERIENCE enjoying children while monitoring their vitals & providing necessary nursing intervention. EXPERIENCE respecting each child & explaining to them what will happen next before doing it.

SKILL & EXPERIENCE that are unfortunately NOT the norm for nurses who provide in-home care to people with medical needs. SKILL & EXPERIENCE we have never found in another homecare nurse in the 5 years my children have been home. SKILL & EXPERIENCE that will leave an enormous hole in our homecare team that we have no hope to refill. SKILL & EXPERIENCE that my children & I will ever miss when she completes her last shift this early evening.

Tonight, in the early evening, as my children ready for bed with her for the last time, their hearts will again be broken by someone who loves them.

A life with meaning

I have more to say about our trip to see the RedSox. I have warned one friend, but not the other, so for my youngest friend I will just use her initial unless her family approves. Not sure how this will come out, but pretty sure I will need tissues…

Over the last year some special children have lost their lives to rare disease. Two of these children I feel bound to beyond having frequent contact with their parents & pictures on social networks- one had frequent medical care with our ENT, the other began her journey with the disease that took her at the hospital where my kids receive most of their medical care- where they are being evaluated for a similar disease.

Ayrie [forever 4] and M [forever 2] came with me to Fenway Park that day. When we surrendered our tickets and stepped through the doorway onto the concrete ramp, I was struck by the coolness and the image of my oldest strolling with my youngest while a nurse carried his other sister whose twin nestled against my neck in my arms. All 4 of my children were there with me, at this historical park, adventuring on a family outing of their shared social heritage. The enormity of what had been overcome, and the journey yet ahead, brought thoughts of my friends who would never again travel on an outing with all their children physically present. Tears sprang to my eyes and I sent thanks to the Universe for my ability to know the significance and experience the joy of this moment.

It hit me then too, that were it not for the lives of these special children, I may have waited beyond this moment, beyond this day, to ever adventure such a venue. The lives of these 2 children have forever impacted my life and the lives of my children. Without knowing of the tremendous lives of these young children, I may still have bought in to the “waiting until they’re stronger”, “waiting until they’re well” mind-set that governs much of what we choose to do as a family. Having known these children faced uncertainty each day and did so with a smile and adventurous spirit has freed me from some of the limitations binding me as a parent of children with significant medical needs.

The life and death of children so young has reinforced that we need to appreciate EACH day with my children. We need to “take risks”- still calculated and unfoolish- but “risk” to live the moments that can stay with them forever. Before I may have thought “well, it’s possible to go to a game, but it will be easier when their trachs are out”. I would have thought the delay nothing more than protecting them from the exposure to germs, exposure to extremes of temperature that are hard on them physically, a delay of access until they were “well enough” to fully participate & enjoy the experience.

Being there that day brought Ayrie & M fully to the front of my mind. It made me acknowledge that the twins, their older brother and younger sister will have memory of the significance of their first RedSox baseball game, experienced together, WHOLE as a family. Regardless of what the future holds for any of my children, this memory will live in their hearts & minds, cementing the bonds of family across experience. Thank you Ayrie & M for touching our lives in this way. I know you both have strengthened and improved our lives through yours.

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