The tapestry of the life of a medically complex family

Archive for the ‘FEAR’ Category

Battle Cry

I apologize when I cry. Not just to the friend who wipes his shirt with a tissue when I’m done, or the friend whose dishtowel needs the dryer after a long lament.

I apologize for each tear that escapes my eye while talking about the difficulty of awake nights spent caregiving my children. I apologize for the gasp that escapes as I talk about my son’s ride in the wagon to the apple tree, to which he could run 2 years ago. I apologize for the pause while talking to the phone nurse and describing how ill my child is again, or yet.

I apologize to my nurses when I cry from the stress, or from loss, or from injury. I apologize.

I grew up in a home where crying was a sign of ‘weakness’. Crying in the house of the Colonel was the equivalent of yelling your inadequacy from the rooftop. It was admonished. It was hidden. It was shunned.

There is a doctor my kids’ see who must also have been raised by the colonel. The notes describe significant concern about my stress. Tears fell but I continued; my kids were safe, they were (are) well-cared for, yet my stress was concerning.

I am sure I apologized. I apologized today to the phone nurse. I apologized to the doc who called me back- not because I cried then, but because I had cried.

The next time I cry, I will work not apologize. When I cry, it is because I am strong for so long. When I cry, it is because I feel so deeply. When I cry, it is to release the strain, to refill my resolve, to regain my strength. I should not apologize for that.

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.

Nurseoem

I meet the nurse & interview
Decide if training to ensue

I schedule training then I wait
Anxious breathing won’t abate

I train the skills, ID the parts,
Teach assessment, talk of heart

I take deep breaths and let them try
Too oft attempts will go awry

The hours are lost, my children pay,
Its rare when nurses last and stay

I give up comfort, sleep, career,
It seems no else can do it here

Keep standards high. I wonder lot:
Home nursing worth it? Think me not.

Just a job

Last night I got confirmation of my fear: the nurse who has been with us for 3+ years is leaving for a day job somewhere else. She needs benefits for her family so I can’t blame her but sometimes I forget that my children are “just a job” for so many people who come into their lives. How do I protect them, or me for that matter? People come into our home, they are caring, helpful, loving. My children quickly grow to love the good ones. They learn the schedules, routines. Each of my three little ones anticipates the arrival of their favorite(s), knowing which nurse comes after which shift. Then their favorite nurse leaves…

Today I am crying, moping, trying to keep my sh*t together. I have not told them. I have not warned them. I am trying to manage the stress of all else that is going on with the definitive loss of more than half my nursing shifts in little over a week. I will be moving from about 16 shifts/week back down to 7.  55 hours seems like a lot of time to have a person in your home helping you care for your kids… until you look at the fact that 28 of those hours are while the children are in bed, over 3 nights, the only 3 nights you can sleep- but not until after 11p since you have to be up to let the nurse in, to “report out” on the events of the day, to communicate relevant medical info. and be sure that treatments begun since their last shift will be continued overnight. Then you go to bed and toss and turn until you either manage to fall asleep about midnite or you go back downstairs at 1230/1 a.m. to get benadryl or headache meds to HELP you to fall asleep… until you awaken in a panic after 4 hours because your schedule the other 4 days is getting up to check on the kids and be sure their breathing tubes are in place, CPAP masks are on, respirations seem normal… or on nights when they are sick you spend most of the night up doing breathing treatments every 2 hours, across 3 beds, hoping to catch some  ZZZZZs in the 90 minutes in between.      3 1/2 years of this – averaging about 35 hours sleep/week on the best of weeks.

Then the day shifts, well they do the 8-35 breathing treatments that occur daily in your home (8 is the minimum with 4 for Trachboy and 2 each for the girls). The nurse checks respirations, heart & lung sounds, trach & gtube patency; provides sponge baths, trach care, trach tie changes, gtube care and chest PT; monitors respiratory changes during play and other activities and monitors for aspiration during meals or feedings. When there is no day shift all these tasks fall to me, on top of the upkeep of the house, scheduling and following up of medical care appointments, reading stories, playing games, ordering oxygen & medical supplies, and all other single mom roles. The new schedule will hold only 2 weekdays with day-time nursing coverage…

Most (lucky) children go through life with one or 2 caring adults in their home who love them and manage the day-to-day for them. These *parents* are stable persons, present throughout the child’s life, through ups and downs, sicknesses & well-times. Other adults are encountered outside the home and may be transitional, temporary. These adults may support the family but are distinctly separate from the “family” of home.

My children were born through cocaine-induced labors, grew weeks to months in hospital settings where caregivers changed on 8-12 hour rotations across a day, 10-20 caretakers/week. They then were separated from all they knew, moved to either a new hospital or to a foster home- a temporary place which held caring, yet still paid, persons who watched over them, with shifts of other paid professionals moving through to play with and help care for them. Each of my children “lost” these families, however unusual the circumstance, to come home to me, the woman they were *grown for*, their mother and one parent they will ever know… And yet each week, they come into contact with others in their home whom they love and cherish and include in their hearts as family. These people, our nurses, are transient as well. Something happens, the nurse’s life moves on: job opportunities, weddings, parenthood… and my children “lose” – again and again. To these men & women, although they are wonderful FABULOUS nurses, who usually also love my children, my children are “just a job”; a job without great health insurance, without room for advancement, a job that sometimes needs to be replaced with one that HAS these opportunities/benefits, one which might eventually benefit their career & lifestyle.

How do you look into the eyes of your 4 year olds and the eyes of your 3 year old and tell them they are “just a job”? While their hearts are breaking and they are again learning to distrust? It’s “just a job”…

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