The tapestry of the life of a medically complex family

Archive for February, 2012

Tired Burn

I’m tired. After a week without much nursing support I am not just the usual “tired” from lack of sleep- I am tired “burnt out”. I have spent the day behind the 8-ball, trying to get through meals, trying to get saline neb after saline neb up to run, trying to keep the schedule running. And tonight the nurse is coming late.

One of the most difficult things about parenting my complex medical needs’ kids is needing to be in “clinical” mode so very much of the time. Today I worked to focus my son enough to get in some minimum daily calories and enough fluids- only to be thwarted by sunbeams gleaming into the kitchen & distracting him with the floating dust. By the start of dinner, he was yawning and slouching in his chair- dinner was NOT going to be a success – and we had missed snack. The rest of my day was spent doing saline nebs to clear out the thick, copious secretions which seem prevalent in both of the twins today. And I feel guilt for not getting to laundry, for not trimming their nails, for not taking their temps or assessing lung sounds frequently with a stethoscope. Was “ausculation with a stethoscope” in your parenting books??

Hoping when the nurse gets here I will get right to sleep… I need to be “refreshed” by 7am if there’s hope of a shower before the newest attempt [nurse] arrives for training.

The Day Before, Year 2

This year has been filled with sorrow, joy, health, illness, triumph, failure. It has been a year of growth, of moving homestead & continuing to mourn. It has been a terrific year and a difficult year. And it has been a year that I have thought about you, Shiya and Ayrie each & every day. Sometimes with sadness, sometimes with laughter, sometimes because a picture of your family that is new to me comes across my “news feed”. The twins still say goodnight to him each time they regard the night sky. Keva still has conversations with him “in my heart”, she says. Know we are thinking of you as you prepare to remember him on his sixth birthday & I get carrots ready to shred for our cake in his memory. Hugs & love & this reminder:

Published a year ago today:

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.

Those I Love

It’s been hard to keep up with blog prompts for this month of blogging every day! Today they want to know who I love- well, I’ve already written so much about them I can’t imagine you’d be very surprised. My kids are the most wonderful people to ever happen to me.  :) My oldest  is a terrific emerging adult. He’s back in college and working his way into a routine with it. He still makes me smile whenever he Skypes his younger brother & sisters – chatting with them about nothing, the objects they can see in the room behind him or answering all their young sib questions.

The twins are doing wonderfully well. Health is still an area of challenge but I’m able to keep these loves of mine home with the help of some terrific home nurses. Growth is a slow & lengthy uphill battle, but they are happy & developing. Can’t wait for their sixth birthday in 2 weeks!

My youngest is a love all her own. She is compassionate & caring and my companion on all errand runs. She adds a level of noise and energy to the playroom. I love her laugh and smile. My kids warm my heart every day.

Blood is Not Always Thicker than Water

There are people the world over who believe the bonds that are most enduring are the bonds of birth: “Blood is thicker than water”. Within my immediate household, these words have been disproven again and again. 3 of my 4 children joined my family through adoption. My children are loving and close with each other in a way I always have hoped my children would be. My youngest 3 share biology but they all hold my son & my hearts- bonded as family, across bloodlines, across race. We are a real family.

Basic Skills

Sadly enough, so many of the nurses sent to interview or train here just don’t have them. The “nurse” scheduled to come tonight cannot assess lung sounds, determine if my kids secretions are copious or dry to the level of needing intervention; and when TOLD to intervene, she stands & waits for direction. There is a level of ineptitude that I have come to expect, but this bungling person has been “trying” to gain a skill for more than a month now.

I know that it’s time to let her go but, in addition to her lack of skilled nursing ability, she has no filter on sharing every minute detail of her life. Because of this, I know her family business has failed, her husband is only working part-time and she relies on the income from my home to keep a roof over their heads. In today’s economy, it is hard to discount the very real role this job could have on a person’s ability to avoid homelessness. This responsibility is far beyond what I signed up for when I accepted nursing support to maintain my kids at home.

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.

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