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.


Y does it always feel like it’s my fault? Like it’s a personal failure? Like there was something I could have/ should be doing?

Tomorrow my son has an appointment with his neurologist at the Autism Spectrum Disorders specialty clinic we go to. We moved the appointment up a month because he is having significant anxiety, which is causing out of control behavior. Behavior that looks like an increase in motion when nervous- regardless of setting, footing, seated, STANDING on an exam table.

And he hurt my upper back. And we were in the pediatrician’s office. And I couldn’t push through the pain so I had to ask the nurse to step in. So the pediatrician thinks he needs meds for his anxiety- and maybe impulsivity.

And my response is… about me. About how if I just worked harder on his behavior, on teaching him relaxation techniques explicitly, on working harder to give him more skills, somehow I could have changed this path. As though I, his mother in every way except uterine growth, can battle it ALL. The genetics I have no real information about. The exposure to cocaine and its neurological impact. The turnover of nurses intended to be here to help with his diverse & dynamic medical needs.

Tonight I am feeling afraid of the impending added med. Tonight I am feeling like I have failed to give him tools I should have in order to avoid this path. Tonight I am feeling sad about the limitations of my capacity to “make it all better”.

Hoping it goes well. All I can do is give the doctor all the information she needs to make a good decision on what to do. And then follow through while continuing to try to work on all the skills that may help him to manage things better on his own in his future.


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.

Breathing Room

We have changed pulmonologists. Our previous the twins have seen since infancy, across 2 hospitals, every 3-6 months their whole lives. He is a good man, a great doctor- but impossible for me to reach lately. He does oversee our care but there is no clarity for me on WHEN to access him, WHEN he wants us at our pedi. This man is bright and CAN be articulate- but if I balk, or hesitate on a change, he defers rather than explain. I am sad. I miss him & haven’t started with our new one yet- but I know in my head it is time to move on.

If you think the above seems more like a recommendation than a goodbye, then you are reading it correctly. He knows so much that he is terrific. But there are 2 things he doesn’t know:
1. What is wrong with Tav’s breathing?
2. I am having a near breakdown because we can’t find the answer to question 1. I cry myself to sleep. I cry while I type my blog. I cry when trying to talk to the farmer about how we need to park close to the apple trees because of the oxygen. I cry when his colleague asks me how things are going at an appointment for his sister.

It was time for this change.


Nerves. WHY do I still feel nervous when I head into a clinic appointment with pulmonary & GI? It’s not like pulmonary is going to come up with something profound … like, gee, they already have trachs. Maybe I worry I will forget to ask something, forget to get orders for something that will keep us able to maintain life at home. Maybe he will hear something in Tav’s lungs that I can’t hear- some change- it’s like walking into creativity central going to a children’s research hospital. You never know what you will come out “knowing” or “asking”- the latter being most likely!

With GI, a bit of it is routine. BUT there is the “alternative” diet discussion I know they will want to have. The talk that will ensue when I disclose that we rarely get 1/2 a meal into Tav on any given day- usually one yogurt and lots of peanut butter formula, but almost NO solid food. There will, no doubt, be bloodwork. My kids handle bloodwork like other kids handle a trip to the ice cream store- it’s one-on-one time with Mom, they treat it like vacation time! My kids are the ones who cry if they are the kid left in the stroller while the other goes into the lab. It’s a sad testament to their strength, their ease at dealing with the burdens of their medically complex life.

Maybe I fear they will identify a “deadline”- getting him back to eating food, real solid food, age-appropriate quantities of food. Will they push to have him participate in structured feeding therapy? Feeding boot camp? Order a return to a commercial formula that the nurses would feel compelled to comply with? UGH! I need sleep!


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