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.

The grief pit

Some days I still feel like I can’t climb out of the pit of grief.  Instead, I dive into it, using blogs, facebook, scifinder (yes, I am a scientist!), other internet resources to seek out more information about Klippel-Feil syndrome, about parenting children with special needs, about how to do this.  And I find amazing things on some days.  Today, I found another mom to toddler baby girl with an even rarer genetic condition which caused congenital structural deformities.  I glanced around her blog, surprised to see some of the same topics I’ve posted on here.  Wow.  We’ve had some of the same experiences.  Fantastic!  Ok, not fantastic, but you know what I mean.  I also did some looking into the genetic tests that are being ordered at your next surgery.

But somehow, after indulging myself, letting myself do a little “mom of a child with extra medical needs”, I just feel sick afterwards.  Like I’ve had 3 too many glasses of wine.  Too much, too fast.   It sure was “fun” while I was doing it, but where did those two potentially productive hours go?  I shouldn’t even have those two hours to spare – web surfing while my kids are at daycare.  Let’s not even talk about the work I’m supposed to be doing.  So I get this lovely combination of emotional overload, due to the nature of what I am browsing, and guilt, due to feeling like I have so many more important things I need to be doing.

This happens often on days when I spend part of my normal working hours with Miss M at a medical appointment.  Today it was Early Intervention.  Two hours of discussion of your milestones, your goals – should be every mother of young baby’s goal and dream in life!  Instead, even though you are doing great, it just ends up leaving me drained, with the subprocess running in overdrive.


Four weeks

Four weeks from tomorrow, you will be having your third surgery.  It’s hard to explain, when you have such a visible issue that so obviously needs to be “fixed”, how incredibly hard it is to watch you go through these surgeries.  Logically, it “has” to be done.  But logic has no bearing on the extreme emotions that I feel when I hand over my baby to strange medical staff, to be taken into an operating room, under anesthesia, separated from the caretakers she knows and loves, to be cut apart and painstakingly pieced back together, and then to see you awake in recovery, hurting, confused, groggy, unrecognizing.  The beneficial outcome doesn’t diminish the pain and fear of the surgery in the slightest when you are in the moment, facing your child.  And having been through this twice, I know this now.  I know how incredibly hard this is going to be, how it feels like my heart is breaking in two to see you in pain and frustrated and upset and struggling.

A normal childhood

One of my biggest dilemmas is how to make certain you have a “normal” childhood, Miss M.  I want you to be the child who doesn’t let your physical limitations and difference of appearance slow you down.  I want you to be the child who uses your experiences to make a difference, who starts the lemonade stand at age 8 to raise money for vertebral segmentation defect research, who starts the kids support group online, who gets voted class president in high school because everyone recognizes your differences, what you have overcome, and loves you so much.

I was not that child – I was resentful, I had low self esteem, and I was always the last kid picked for the team.  I was unpopular from a young age – even at age six, I already felt different and like I didn’t fit in.  I know my parents probably could have done something to help me with these issues, but I honestly don’t know what.  Therapy?  More supportive of team sports participation?  I always liked to write, so they did encourage me to write.  But I always felt defective, wrong, and not special.  Even as an adult, I blame a lot of that on my cleft lip.

I think conventional wisdom says to treat your child, whatever their limitations, as though they can do anything they want.  Not just treat them that way – truly believe it yourself, as well.  I worry though that this belief, that you can achieve anything, the sky is the limit, ignores your reality.  You will know this isn’t true.  Your neck is very fragile.  Risk of injury from physical activities is very high – it’s unlikely you’ll ever play sports.  You’ll feel different because you can’t play on the teams with all of the other kids at school.  I can’t parent in a way that makes this fact disappear.  Inherently, you will be different.

And I don’t want this difference to be ignored.  I feel that part of the reason that I had so much of a struggle through my childhood is precisely because my parents minimized the effect my cleft had on my ability to fit in.  They ignored it completely.  I don’t recall my dad ever uttering the words “cleft lip”.  I can probably count on two hands the number of conversations my mom and I have ever had about it.  This lack of communication about it made me feel like my problems were all my fault, that the cleft lip really didn’t have anything to do with my difficulty finding friends, that inherently my personality was flawed.

Flash forward 30 years, I’m now highly educated, have a career, have normal relationships with plenty of friends, my husband, and my in laws.  Still working towards a normal relationship with my sister and parents, because of all of the baggage.  But essentially, my cleft isn’t a factor in my life now.  However, my experiences in this regard make me hyper-aware of the barrier you will face to fitting in with your peers as a kid.

So I don’t know how to strike this balance – how to parent in a way that enables you, while not ignoring your struggles and differences.  How do I convince you that you are special, worthy of love, and give you the self confidence you need to weather the storms ahead?  I can’t pretend you aren’t different.  Your differences occupy so much of our time and so much of my thoughts.  To pretend otherwise will place barriers between you and I, and I don’t want that to happen, as it did with me and my own mother.  But will acknowledging those differences mean that I have diminished your abilities unnecessarily, that I’ve imposed my own expectations on what you can and can’t do, and that this will hurt you too?  Is it wrong of me to say to people that I don’t expect you to ever crawl?  Am I already diminishing your possibilities, lowering the bar, and giving you less to strive for?  Or is it important for me to acknowledge your real limitations, but to somehow show you that I think you are extraordinarily special despite those differences?

Following my instincts

The funniest story I heard about “following your instincts” as a parent was when a friend was trying to get her husband to have a more instinctual way of soothing their newborn son.  She handed their crying newborn to her husband, and asked him, “what are you instincts telling you to do”, fully expecting to hear “I should bounce him” or “shhh” or something along those lines.  Instead, he said, in a panicky voice, “hand him back to you?”  Ah.  Dads.

My mom instincts are generally in overdrive with you, Miss M.

This morning your dad took you to the orthopedist for a 6 month follow up.  The orthopedist said you were progressing great, he was really impressed with how well you have done in physical therapy (which he recommended against…).  A second set of x-rays show that you are likely fused C1-C2 and I think it was C6-C7 but you may have some “mobility joints” in between – we’ll continue to get x-rays to monitor whether those spaces open up or not as you grow.  We were worried about your arm range of motion, but he thought it was pretty good, he didn’t see any anatomical issues (that we didn’t already know about) except maybe a slight Sprengel’s deformity on your right side, which might explain some of the decreased range of motion on your right side.  Sometimes they do surgery on Sprengel’s, but he said it is mainly done for cosmetic reasons, and the outcomes were often not great and left a lot of scarring in that area (which is consistent with what I’d read online…). But the main reason your arms have slightly decreased range of motion is because the muscles are attached higher up on your neck because of the KFS.  Everything is just tighter…which is why we will be continuing physical therapy.

This orthopedist is the individual who first diagnosed you with Klippel-Feil syndrome.  And then told me nothing about how the syndrome will impact your future abilities, and specifically recommended against physical therapy.  My instincts did not accept this limited answer to the many questions I had.  I guess I expected that when you get a diagnosis, you get a handout on that diagnosis listing associated conditions, complications, treatments, support groups, etc.  Maybe not all of these things but some information at least, right?  Not so, in the case of rare diseases.  When I asked where I could get more information, they sent me to a general orthopedic society website.  Not exactly comforting, to know that you doctor doesn’t have any answers to your questions – “see you in six months.”  In six months, she’d have missed multiple major developmental milestones – rolling over, sitting up, and crawling.

Instinctually, I knew we could do more to help you.  So we sought second opinions.  The other pediatric orthopedists said the same thing – just wait and see.  I knew we could do more.  So I kept asking every doctor we saw, what they thought, what should be done, who should we talk to.  Finally, someone suggested we see a neurosurgeon.  I put in a call to the neurosurgeon’s office, and went through a lengthy explanation of why I was calling.  I could tell the nurse practitioner was uncertain about whether to make an appointment for you or not, so she told me she’d call back.  After talking to the surgeon, she made an appointment.  A few weeks later, I again felt like I had to justify why we were taking up this appointment slot. But the neurosurgeon was understanding, provided his opinion that she should have physical therapy, and said, you know, while you are here, it is probably a good idea to refer her for an MRI and just make certain nothing else is going on with her spinal column.  And that was the MRI that diagnosed your tethered cord, so we were able to get you in for surgery when you were 6 months old, rather than discovering incontinence and neurological damage when you were older and it was too late.

Seriously, one of my proudest parenting moments.  I knew that wait and watch was NOT the solution.    And now, 8 months later, you have had your cord detethered and have had 5 months of physical therapy, making you a rolling, scooting, and now even pulling-up, machine of a little 18 pound baby.

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.


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