Is it possible that medical trauma, suffered by children, can cause post-traumatic stress disorder in their parents?  From my research on myself, a sample size of 1, I’d conclude that yes, it is possible.

My symptoms are as follows…I have trouble taking life “seriously”.  Deadline at work?  In general, this is a stressful concept.  In reality, I have a hard time getting myself to focus and produce.  My old mind game tricks don’t work anymore – really, after your daughter almost dies as a newborn, and suffers everything she did in her first year, it’s hard to convince yourself at any given moment that it matters if you finish 1 page or 3 pages of writing in a day.  So, more often than not, it’s 1.  My second symptom is that I take everyone else’s tragedies too hard.  Like, waking up in the middle of the night crying over a friend, whom we see a few times a year, who has cancer.  It’s not that I normally would not feel sadness and empathy.  But the pain of this news goes straight to my heart, skipping the filter of my brain, and fills me with hurt.  A random link this morning took me to a blog of a woman whose newborn daughter has another rare disease, and whose daughter has suffered 10x what Miss M has.  Tears, I know, are a normal reaction.  But I feel this pain in my heart, and it doesn’t go away when I move on to other things.

Have I mentioned that I have not slept without the assistance of a medication in over a month?  I remember the days when I slept easily.  It’s odd that now that Miss M’s medical future will likely be filled with predictable stability, for at least the next several years, I feel as disoriented as ever, just as much as I did when we were in the moment, dealing with it. 

And I feel like those moments are trapped inside me.  I’ve tried talking to others in person about some of those experiences.  But it makes me feel broken when I do.  I generally regret opening up, regret the way that I express my emotions and describe the events.  I’m told that talking about these events is how you heal.  Somehow, writing about them makes me feel more whole than talking about them.  Maybe because I can release the worry of judgement, here in my anonymous world.


The real cost of healthcare

So, I know that you are not a typical patient, Miss M. But, I’m thinking we could make a research study out of your healthcare bills. You just turned 14 months old, and your total medical expenses paid out to date is around $300k. The majority of that cost (I’d estimate 95%, without actually looking at the itemized lists) is composed of hospital bills.  The doctors receive very little.  We are sometimes astonished by how little they receive, and how many of their bills are denied by insurance. I really don’t know how they manage to make a living at it (I guess that explains the long hours…). Your dad calculated that the hospital charged $5 per mL for your saline IV transfusions during your most recent stays. If you need a non-metric reference – a mL is less than a 1/4 teaspoon. For saline.

I know there is a lot of discussion about health care costs in our country these days.  I don’t know enough about the economics and realities to understand our own hospital bills, let alone the entire nation’s hospital bills.  But from a personal perspective, I don’t feel that quality and value = expense.  Meaning, the most highly skilled and valued tasks/people/resources are not the ones who get the most money from our insurer. It’s the mundane things, like saline, that seem to cost ridiculous amounts.  Oh, I know, the saline doesn’t actually cost that much.  The hospital is charging us for something else, wrapped up in that saline bill.  Whether it is to pay for illegal immigrant’s hospital bills, or to pay lawsuit insurance, or maybe to even line their own pockets, is irrelevant.  It’s broken.  Smart people need to study this (I’m sure they are) and somehow get through the political rhetoric and media circus to get the general public to understand what is going on (because I don’t understand it).  I think it would take me 4+ years of multidisciplinary study to understand it.  But I wish I did, so that we could make certain we are being as economical as possible in your medical care.

As things are now, we feel that we don’t have a choice.  There is one children’s hospital in town.  All of the pediatric specialists in our town operate out of that hospital – there are no other options.  I’m sure the doctors feel the same pressure – if they want to work in our town, with children, they have to use the local children’s hospital, because “every” other pediatric doctor uses that hospital.  It would be difficult to coordinate care if they all worked at different hospitals.  My thoughts on this are likely also influenced by the fact that Miss M has not received the best care at this children’s hospital.  It’s staffed by young nurses, with minimal experience, who are more interested in texting than in looking after their patients.  Miss M has almost died twice under their (insanely expensive) care.


Of course, I, as your mom, think you are an amazing baby.  But it stuns me sometimes how social you are; you are totally tuned in to people, everything they say, everything they do.  Your dad and I are social, but I wouldn’t say we have outgoing personalities.  My parents are also not particularly outgoing, or social.  Your Nana, however, is particularly social.  As was my paternal Granddad.  So, somewhere along the way, this personality trait skipped a generation or two, and I think might now be fully expressed in you.  

We were just at a big family reunion, lots of extended family meeting you for the first time, and I cannot tell you how many people just adored you and commented on your being the happiest, most smiling baby ever.  At first, new people, the loud voices, the crowd, made you nervous.  I think part of this was because only 5 weeks had passed since you were finally released from the hospital for the last time.  Strange people did not equal good things, during the very recent past.  So, you held back for a couple of days.  All of the great aunts and cousins were anxiously awaiting the moment when you felt comfortable enough for them to hold you, and once you realized this was just a big party, you shone.  And it was amazing to see how you just BLOOMED in the mix of the crowd.  Laughing, smiling, cruising around the room from person to person, just flirting and socializing with everyone.  Despite staying up way past your bedtime, multiple nights in a row, you never got cranky or fussy as your brother would have at this age.  And, when your Dad and I finally decided it was time to put you to bed, you were quiet and contemplative for the walk home.  Disappointed to leave, but content to be with us.

And all of this leads me to wonder…do people somehow develop innate compensations for their weaknesses?  Physically, you will always look different, and I wonder if somehow, since birth, you have developed an awareness of your physical differences, and have enhanced your social interaction, and just general overall adorableness, in order to compensate.  Biologically, it makes sense – had you been born 4000 years ago, your social personality might have helped ensure that people around you would help care for you (I’ve read something like this about babies, kittens, and puppies – they all have big eyes, chubby cheeks, stub noses, because adults think it is cute and will feel more attached and thus take care of them).  I wonder if somehow this works a little differently for you, because you know you are not a traditionally “cute” baby, you have amped up your outgoing personality to get the attention and love that you deserve. 

Regardless, the love and concern and care for you was obvious, when we were with family last week.  At moments like this, I truly feel lucky to be your mom, despite all of the heartache we’ve endured in your short life, and the heartache that is yet to come.

Rocky waters

We are a little over 24 hours away from your appointment in the OR, Miss M.  And, the family stress level went from “medium” to “out of control” this morning.  Your brother acts up, because of changes in the household – Nana flew in last night to stay for the next week and a half, and he probably senses that there is going to be a change in his routine. When your dad is stressed, his limited patience becomes even shorter.  Those two things feed off each other and your brother was in “time out” three times within an hour, the last time with a lot of yelling on your dad’s part.  Which makes me freak out.  I hate yelling, I think it has no role in discipline.  So then I argue with your dad about it in the car on our way to work.  Because he is making Nana, your brother, and my own stress even worse.  I’m sure I have some role in this whole dysfunctional mess as well, but I, of course, think I react appropriately and perfectly – no yelling, just calm criticism.  But your dad gets even angrier with the criticism, and gets even more resentful and angry at your brother and me.

I wish I could figure out how to stop this cycle.  I try so hard to do so.  But I can only change my own behavior, and I’m too close to the situation to figure out what I can possibly change about my own behavior to help the situation.  If I knew, I would do it.  I wish there was some magical thing I could do or say to make your brother stop whining and your dad stop yelling.

But maybe I just need to let it go.  Let it go, my guilt over Nana and Grandma having to deal with our family stress too, not just helping with your recovery and playing with your brother.  Let it go, that they see our family at our worst.  Let it go, that it shouldn’t be this way, that we should all support each other and focus on you, Miss M.  Let it go, that your brother may have some emotional challenges to deal with because of the extra stresses during these times.  He’s a smart, strong, kid, and overall he still has so many advantages in this world, he’ll figure it all out and be ok.

woe is me

I’m definitely struggling a bit right now, with the palate surgery scheduled and the count down begun.  The unfairness of what you have to go through, my sweet, just weighs on me some days more than others.

I spend a lot of time every day thinking about you, and your future.  That means I’m not as good at getting other things done in my daily life, which just adds to the life stresses and pressure, when I’m not getting the things done at work and at home that I need to.  And I spend a lot of time mentally beating myself up about that, how much I suck that I can’t seem to focus and accomplish things and that I just use you as an excuse.

I know I need to be kinder to myself.  Because the fact is, I am a different person now than I was three years ago.  It’s hard to define how I’ve changed, exactly.  I think having a child with medical challenges is an extreme parenting event.  When you become a parent, you know there are going to be changes in your priorities, in your preferences, in your behaviors.  These changes happen again, another order of magnitude of change, when you become a parent to a child with medical challenges.

I think, ultimately, I’m still grieving the loss of a “perfect” daughter.  I don’t mean to imply that I would love you more if you didn’t have medical issues – that is entirely not the case.  You love your children for who they are and what they represent – your bond with your spouse.  You have the most amazing, lovable personality, and both your dad and I love you to pieces.  But I am still working through my grief over how this syndrome is going to affect you.  You will have physical and emotional scars from the surgeries, the spinal deformations, and from just being different.  I’m still processing your lifetime of being affected by Klippel-Feil syndrome; apparently ten months has not been enough.  So, we’ll continue to learn, and grow, and stretch our hearts to accept this grief we have been given, until the grief becomes something we rarely notice anymore.


Social Butterflies

We are medical social butterflies this spring, Miss M!  More opportunities to practice your eyelash batting at strangers.

This weekend the NICU where you spent your first 4 days is having their annual reunion.  We’ll be taking you for two reasons.  First, we are embracing our status as a family with a child with special medical needs – it is nice to go to a place where it’s probable there will be other families with children who have overcome amazing odds, and to feel that community support.  That’s just our life now.  The second reason is that there is a bounce house and your brother loooooves bounce houses!

I also just RVSP’d to the cleft family picnic later this spring.  Again, mostly for the same reasons – community support, and they have a train ride for your big bro.  What 3 year old boy doesn’t love train rides?!

I was surprised recently when a very observant friend said how isolating a chronic disease can be, especially for parents.  She said she still sees how much it affects her own mom (and I don’t think she was diagnosed with her chronic illness until she was just out of college, so it’s mainly affected her as an adult, living away from her family.  It has, however, had a major impact on her life, and she was even near death on one occasion).

And it is isolating.  I think that could be the title of this blog.  Isolation.  But that is too depressing.  So, these events are so important for us as a family.  We get to feel normal, and your older brother gets some special attention.  Before having you, Miss M, I didn’t get that.  I would have thought that hanging out with a bunch of kids who’d spent a lot of time in the hospital would be sad and depressing.  Now I realize it’s the day to day challenges that can get depressing, so these family events are so important to provide a place to feel normal, to feel like part of a bigger medical family.

The isolation ebbs and wanes.  As you get older, we spend less time worrying about your medical milestones, and more time enjoying you as a baby.  Which makes us more like all of the “other” families, and I feel more comfortable talking about all of the wonderful things my baby is doing with friends who have babies who don’t happen to have the same medical challenges.  I know there will be plenty of isolating moments again in the future – each surgery, each diagnosis, each milestone missed, each therapy session.  So for now, we’ll continue to embrace the opportunity to meet others who have/are struggling with similar challenges.

It’s hard on a marriage

I’ve heard all of the cliche’s about how hard having a child is on your marriage.  And, they are true.  Somewhere, I probably also heard that going through major medical issues with one of those children is even harder.  That’s true too.  And, now I realize why and want to explain to you, Miss M, should your dad and I not make it “til death do us part”.

It struck me today, as I was leaving a doctor’s appointment, frustrated by your father’s way interacting with the medical staff, and him frustrated with me, why this is so hard.  Most married couples aren’t put into these situations.  Most married couples don’t have to sit in a doctor’s office, have a ten minute conversation with a highly trained individual who is going to cut apart your child, and hopefully sew them back together again in the right way, hoping that we thought up all of the right questions to get all of the answers we need to get our baby through this ordeal.  Most married couples don’t have to leave the office, suppressing their fears, their emotions, their worries, not talking to each other about them, because quite honestly, the other person can’t take it either, and the other person doesn’t have any answers, just frustration of their own which might boil over with just the slightest little addition of your own emotions.  So it begins to feel like there is this whole part of you that you are not acknowledging, because you aren’t able to talk about these things, and you can’t rely upon the other person to help you – they are in their own pain, dealing with it in their own way.  It takes the utmost care and consideration and devotion to truly understand how another individual deals with their pain.  When you are in a position of grief, fear and pain of your own, it’s hard to take on another being’s pain as well.

All of this makes it sound like your fault, my sweet Miss M.  And that would only be true if you somehow chose to be the way you are; clearly you didn’t, you had no say or responsibility in the matter. At the same time, nothing you do or don’t do could affect our general discontent with the cards that you have been dealt in this life.  So never worry your sweet little head, never think of our discontent as your fault.

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