Hands

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I’m in the midst of spending my first summer at home with the boys.  Last summer, Marshall was still going in and out of the hospital with every cold he caught, so we didn’t end up spending a lot of time together at home.  This summer has been one of fairly good health, so other than scheduled appointments and an MRI last week, we’ve lounged around the house a lot, gone to parks, and run down just about every Pokemon we could get our mobile phone hands on (that sentence is going to sound really dated in a few years). 

You’d think with the good health, things would be great, and in many ways, it has, but the calm before the approaching storm (more on that later) has given me the time and space to digest what’s been going on, and frankly, I’m angry.  I’m resentful, and I shouldn’t be by now.  I just can’t let it go.

Now that he has been out of the hospital for his longest stretch yet, Marshall appears to be making up for lost time developmentally.  He’s playful and he’s learning to communicate.  He’s on the verge of walking without holding on to anything.  Watching him interact with Quinn is a joy to behold.  Sometimes, I’ll ask him to touch Daddy’s face, and he’ll reach his little hand out as far as his stiff shoulders will allow, and he’ll gently touch my cheek. 

His hands were the first indication the instant he was born that something unusual was going on.  I remember seeing his fused fingers, and thinking maybe he had some sort of sac covering his hand, but in my mind, I knew something was up.  I’m not the only one who had a hard time holding his hand at first.  It was difficult to feel the lack of a space between his digits for a long time. 


I love his little hands now.  The feeling of a hand that smooth and unbroken on my face is still shocking, but there is nothing softer than the palm of his little curved hand.  He has adapted incredibly well to the limited mobility in his fused fingers and his small bent thumb.  He picks up food and toys with ease, and delightfully bangs away on the piano day after day.  It’s also the hands of other children his age, though, that bring up the anger in me the most. 

It’s ridiculous that I can’t get past this. I’m going to be honest – I still cannot look at photographs of friends’ newborn babies without getting angry, and I hate myself for it.  I can’t bring myself to “Like” Facebook posts where I can see fingers, and the mere sight of those damned Anne Geddes photos of babies in flower pots makes me hot with rage.

My rage is for my son’s surgeries in the past, and the one he’s about to have at the end of this month to separate his fingers.  My rage is for the fact he’ll never be able to bend his fingers like mine when he wants to play the piano or hold a pencil.  My rage is for the surgeries on his skull that he’s going to have over the course of his childhood.  It’s for the looks and stares he will have to endure, and for all the doubters who will write him off before they give him a chance.

Most of the posts on this blog over the last year have been pretty positive.  I try to keep it that way in case new parents of a child with Apert syndrome come across the blog are looking for comfort or perspective, but the reality is, I suspect a lot of people in my situation probably have bouts of anger and depression over the cards their child has been dealt.  Thank goodness for the internet and the presence of an online community of people who can lend me their experience and wisdom.  I’ve had a lot of comforting words sent my way by parents who have gone through everything I’m going through now, and for that, I thank you (especially you, K.M.S. – you have no idea how much everything you’ve told me means).

Maybe the anger I feel is what I need to carry me through the doubts that float around my head all the time.  Perhaps it’s the fuel I need to fight for my child when the public system is inevitably going to try to tell me he can’t do this or he can’t do that.  I don’t know. 

In those times, I look at his little face and his hands and wish I could switch places with him and take away all of his pain, all of it.  All of it.  Right now, tonight, I hate this world, but tomorrow, when I pick him up and he lays his sweaty curls on my shoulder, hopefully things will be alright.


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As I mentioned earlier, we’ve noticed that one of the things that makes Marshall happiest is music.  He does a little dance when he hears music, he’s mesmerized when I play the piano or ukulele around him, and a few times a week, he’ll sit on my lap at our piano and pound the keys for fifteen or twenty minutes at a time.

On August 30th, Marshy is going is scheduled to go into Sick Kids for an operation to release his fingers.  This eight-hour operation is a big one, and it is going to be really interesting to see how he reacts to having fingers for the first time.  His fingers will never work like mine – he won’t be able to make a tight fist, and his thumb is shorter and at an angle – but this should still make an enormous difference for his development.

I’ve never thought about how lucky I am to have my hands.  It will be exciting to watch as Marshall discovers his.

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The Difficulty of Staying Positive

Quinn holding his little brother.
Quinn holding his little brother.

I can still vividly remember Nikolai Borschevsky scoring the most important Toronto Maple Leafs goal of my lifetime.  I was still optimistic at the age of seventeen that I would soon see my Leafs win the Stanley Cup.  He scored the series-winner against the favoured Detroit Red Wings, and the city went wild.  Disregard the fact that they didn’t end up winning the Cup that year or any year since; for at least one night, the city believed anything was possible.

In the years since, we’ve learned to adjust our expectations.  The team has very occasionally been decent, but it has mostly been filled with disgust and disappointment.  In mid-90s, after Borschevsky scored his goal, hopes ran high each year.  Steadily, expectations have been eroded so much that some seasons, I’m surprised they can find twenty guys that can skate.  I’ve learned expect little, and hope to be surprised.

This is the opposite of how I want to be with Marshall.  I have been telling myself that he is going to surprise people, he’s going to surpass all expectations.  To be clear, I don’t know yet what those expectations are, and doctors have cautioned us that it’s still too early to tell what’s going to take longer to develop or what’s going to be a challenge in the coming years.  Regardless, I have refused to treat him differently than I treated Quinn.  I take him out in the stroller every day for long walks and we sit on benches and have a bottle of milk in the warm, sunny weather.  We’ve been reading books together each day, and I see his eyes darting from page to page, animal to animal, colour to colour.  We roll around on the floor and cuddle, we sing songs, and I tell him how much I love him.

Yet through it all, I still find it so, so hard to ignore the voice in the back of my head that cautions me to be guarded in my optimism.  Personally, I’ve spent my life expecting little of myself and just coasting.  I’m tired of being pessimistic all the damn time.  I want to pour my optimism into Marshall’s life and dream of all the incredible things he’s going to do, just like I have hopes and dreams for Quinn.

So, it’s been a good, if tiring, few weeks since the school year ended.  I’ve been home with the boys, taking Quinn to his half-day summer camp in the mornings and picking him up at noon, spending the intervening couple of hours strolling around the neighbourhood with Marshall, and then keeping them both happy and fed each afternoon.  I had almost stopped thinking about the nightmarish start to Marshall’s life in February.

Today, we took Marshy to Sick Kids for his first appointment with his neurosurgeon.  Eventually – likely in the next half year or so – he will have his first cranial surgery.  Today was a chance for his neurosurgeon to meet him and do a quick check on his growth and progress.  (For any doctors reading this, I want to implore you to remember that parents that are seeing you are probably incredibly anxious and worried.  Please, please try and throw something positive into the conversation.  Anything.  Tell me he has a cute chin, or that his fat cheeks are delightful.)  Anyway, the doctor confirmed a worry we have had (I’ve actually been avoiding thinking about it or hoping it’s not true) about Marshall’s apparently lack of focus on our faces.  So many things could be causing this, and now we’ve got another ultrasound lined up, and an MRI which will require sedation.  His condition has so many factors that it could be a lot of things, and I suppose it could be nothing.  Still, the appointment crushed me.

Tonight I gave my little Marshy his bath.  I always get in the tub with him, as I did with his brother, and he has slowly begun to enjoy (I think) his baths.  I held him to me and cried tonight, sorry that I couldn’t protect him from all of his hardships, sorry that he would have to add another few procedures to his growing list of hospital visits.  He leaned his head against mine calmly, and I found comfort in his pillowy cheek as it rubbed up against my wet face.  I still weep and scream about the unfairness of the situation; why him?  why anyone?  But I know it does no good.

There are a couple of groups on Facebook – closed to the public for good reason lest the trolls begin commenting on the photographs – open to individuals with Apert Syndrome and families who are raising an Apert child.  I’m amazed at the number of members in the groups; in the larger one there are over 1500 members, quite a number given the rarity of the syndrome.  I’ve mentioned before that I find it hard to read updates posted to the group.  I’m still too much of a coward to read the posts without periodically crying or despairing, even though many of the messages are beautiful.

There are people with Apert syndrome who frequently post in the group, and one in particular reached out recently to Bridget after reading about our experiences.  Her message was one of success, triumph, and independence.  She has achieved more than I have in far fewer years, and that gives me something to hold on to.  I am so grateful for her unsolicited sharing of her understandably private life.

Perhaps my expectations need to change a little given what Marshall is facing.  It will probably take him longer to hit milestones such as crawling and sitting up, although I still don’t want to believe it.  I need to find a balance between my hopes and reality.  I know it’s not my life that he’s living, and my job is to be there for him and to show him love and support.  It’s just so hard to watch it all unfold feeling so powerless.

Marshy, I’m not giving up on you, and I’m sorry if you ever see me looking sad.  Sometimes, I just need to let out all of my fears so that I can be strong for you.  I believe in you – far more than I believe in the Leafs.

I love you my little boy.
I love, you my little boy.

Anger and Resentment

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Quinn on the right showing Marshall his Lego creation. Not pictured: a flood of blocks covering the rest of the living room floor, and two exhausted parents.

I am struggling for words today.  It has been quite a while since my last post, as life hasn’t given me enough time to sit down and write my thoughts down.  Marshall was discharged from the hospital about a week and a half ago, once his breathing stabilized and he was able to feed from a bottle properly.  I have been extremely paranoid about getting him sick again, as I have not been able to shake the cough I got from our other germ factory, Quinn, about two weeks ago.  Between the germs I’m afraid to bring home from school, and the horror show the TTC streetcar poles must be, I’m lucky to still have a layer of skin on my hands right now.

It has almost felt normal the past ten days.  I use that word so hesitantly, as nothing truly feels normal anymore.  We sit together at the dinner table, we talk, and the four of us spend the early evening together before Bridget and I divide and conquer during bedtime routines.  I have spent a lot of time holding Marshall in my arms in the middle of the night.  Thank goodness for the NBA playoffs right now.  If not for late-night games, I don’t know how I’d pass the long hours while I rock him to sleep.

He looks so much healthier than his early stints in the hospital.  He is pretty hefty, and for his age, he’s quite long.  I try and interact with him the same way I did with Quinn, but there is definitely a strain in my heart every night as I worry about whether or not he is going to start showing signs of delay.  Or, maybe, he’ll give me some signs that everything is on track and it’s all going to be just fine.  I know this language is not right, and not sensitive to his situation.  I’m not necessarily implying that any delay equals “bad”.  I think what I’m saying is that given the issues that are already evident, I am hoping that there will be a minimum of other hurdles.

Then came the weekend, and we had a nice brunch to attend at the home of good friends.  I’m not amazingly comfortable in social situations at the best of times, but my anxiety level was off the charts.  I had no reason to be anxious, as our friends already know the situation, and are about as loving and supportive as you could possibly hope for in friends.

It was the other children who were going to be there.

There were four other children there, plus our two little ones.  And I love their kids.  They are wonderful, and beautiful.  And as soon as I saw them, my heart broke for all the wrong reasons.  I’m finding it so hard not to compare my beautiful little Marshall to all of the other children I see.  Just as I thought, Hey, everything is getting better!, the sight of the other children and the stark difference in appearance to my little boy was a little jolt of reality.

A counselor told Bridget and I recently that as parents, we only have the right to love our children.  Expecting them to be a certain way is often a projection of our own insecurities and hangups – guilt that we’ve accumulated from our own lives.  People tell me that Marshall will view his physical differences differently than I do, because it will be the only reality he knows.  I’m struggling with that idea right now.  Although I hope for something different, I am dubious about the idea that our world knows to treat all people with love and kindness.  I’m too cynical to hold that thought now.  I’m too angry about my inability to let joy into my head anymore.  I’m too sad that my little boy has to go through this damned struggle.  If one more person tells me that all children have struggles, I’m not sure I’m going to be able to keep myself from tearing my hair out.

I hurt knowing that my fears for him are nothing in comparison to what he may have to endure.  I would give everything for him to be spared the pain of the procedures he will have to undergo.  I’m angry at the unbelievable odds that this particular rare mutation occurred.  I’m angry at feeling constant worry instead of happiness during what should be a time of joy.  I’m angry at the ultrasound radiologist, who I will forever believe was too damn lazy and incompetent to do their job properly.  I feel angrier now than I did as a teenager listening to the Smashing Pumpkins in my room at 2:00 in the morning wondering why I couldn’t figure out my Physics homework.

I’m so tired of feeling hopeless.  I just want to hold him and love him for who he is, and for the man he will become.  I know I will get there eventually.  Sometimes, I am there, during moments when I let my guard down, when I lean in close as he is falling asleep and I let my worries and tears spill out to him, hoping he can hear my voice.

One day at a time.

One day at a time.