Mother enough?

Blog Mum enoughBy SB_FASD

Am I mother enough for this day?  Have I strength enough, humour enough, patience enough, faith enough in those around me?  Today our little guy is going to have his hand operated on by one of the UK’s top plastic surgeons.  He is having a ‘web release’ and Flexor Digitorum Superficialis (FDS) Opponensplasty done on his right hand, the hand he cannot use because – as he says – ‘it’s rubbish’.  The hand with the thumb that doesn’t work properly because while he was in utero alcohol washed through his developing system and damaged the joint so badly that his thumb does not extend properly.  Every time he tries to open something, he has trouble.  Every time he tries to do a button, he has trouble.  Every time he tries to hold something with that hand, he has trouble.

They can’t do anything to the bones.  (We were told by an orthopaedic surgeon that he is in fact lucky to have any joint there at all, which may be true but it’s still less than okay.)  Since they can’t fix the irreparable damage to the bones, this plastic surgeon is going to move tendons and work her magic to (hopefully) give him more range of motion, more strength.

Our son is 13 years old now.  He woke up this morning hungry.  He can’t eat.  We have to somehow get him into London, to Great Ormond Street Hospital, without him losing his cool.  Anxious (freaked?), out of sorts, uncertain.  He asked if he would still have the bandage on when he goes back to school on Monday – time has never been something easy for him to wrap his head around.  We have explained repeatedly this means no gymnastics for three months, that he will have to do exercises after this for his fingers, that he will have a big bandage.  But right now, this moment, all he knows is he cannot eat.  And he keeps staring at his little thumb.  The thumb that is 1/3 the size of his left hand thumb.

Am I mum enough for the uncertainties of this day?  The child who we need to give advance notice for everything does not yet know (because they don’t yet know) if he will need to stay overnight tonight in a big London hospital or if he will be coming home.  He worries about his dog.  He worries about things he doesn’t tell us worry him.  Our bag is packed, but somehow, I am feeling uncertain.

Facebook just popped up a memory from years ago, another time he was being prepped for a surgery – a tonsillectomy.  The nurse that day asked me if we were missionaries and if that is why we adopted.  This system can be cruel.  Somehow when we are at our most vulnerable they think that is the time to start questioning adoption, demanding to see papers.  Raising this issue right in front of our child when he most needs security.  This time, I have the papers in my bag.

Am I mum enough?  I don’t know if this is ‘right’ to have this elective operation.  I know there are children out there having far more serious operations to save their lives.  He has managed for 13 years with this hand, are we being foolish in trying to address this issue?  What if it doesn’t work?  What if we have put him through this for no good reason.

Somewhere inside me is a scream.  Why does this poor child have to go through so much pain and why does he have to face hurdle after hurdle where others walk on a more gentle path?  We can’t do operations to fix the parts of his brain that were affected.  Just a few days ago he asked me again about FASD.  He said he wished he didn’t have it.  He said he was sad.  I said I wished he didn’t have it too, and I was sad too.

We are lucky to live in a place that has free healthcare.  We are lucky to live near one of the world’s leading children’s hospitals.  I think everyone this year will get a copy of Peter Pan for Christmas – the royalties from that book have funded Great Ormond Street with its magical waiting rooms and state of the art technology.

But still, here we are.  Getting ready to make a journey that is outside all of our comfort zones.  Trying to fix – or help at least – in one small way at least one of the physical effects of prenatal alcohol exposure.

I wish just one of the self-righteous women who proclaim it’s their right to drink alcohol while pregnant could make this journey with us today.  I’m not talking about the women who don’t know they are pregnant, the ones who are confused about guidance, or the ones who struggle with addiction, abuse.  I have sympathy for them.  I am aiming this at those who accuse us of policing pregnancies when we try to raise awareness of the risks of alcohol in pregnancy.  You can’t possibly know what you are risking.

Come with us today.  And then I dare you to take another sip of that self-indulgent glass of wine.

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See also Prenatal Alcohol Exposure Damages Bones Too

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Prenatal Alcohol Exposure Damages Bones Too

blog-bonesBy SB_FASD

There are not many days when we dwell in that place.  Maybe you know it: the place where we are forced to imagine our loved one floating in the womb when the alcohol pulsed through his developing system.  The place where we are forced to think very concretely about what parts of his body were damaged and when.  We were standing before a 2-foot tall x-ray viewing screen at the Royal National Orthopaedic Hospital.  Somehow it’s different seeing it on screen, in black and white.  Suddenly, it’s not a “hidden” disability.  This, this is visible.

When he was little we found out he has some fused ribs.  That knowledge didn’t really sink in.  We just thought it was curious, absorbed the advice that he cannot play contact sports, and moved on.  For years in the bath I used to get frustrated he would not put his head back to wash out the shampoo.  Then we learned he has fused vertebrae and cannot put his head back.  After that news, we were relieved to hear it is okay for him to do gymnastics (since we probably could not stop him from flipping and jumping anyway), and moved on.  And here we are, a few more years later, staring at another huge screen once again, looking at more x-rays, more irrefutable damage.

He is more tolerant of these appointments now.  Because of an NHS record screw-up, and despite having had x-rays a few weeks ago, he sat for them again, resigned to it, even after I had promised he would not have to do that today. (Years ago he became dysregulated when he was having his ribs x-rayed we had to leave in full meltdown and return to have them done under sedation).  In fact, he’s a little too comfortable in the setting, I thought, as I watched him skipping ahead of us, dancing and twirling down a long hospital corridor.  I felt sad, a weight in my stomach.  This child so full of life has spent too much time in too many hospitals.

At the beginning of the appointment we were seen by the young registrar.  Now, x-rays in hand, we had a full team in the room giving us the results.  I forced myself to look at that screen and tried to see the “good” news they were showing us.  I tried to forget the obvious point that his right thumb is one-third the size of his left thumb and I tried to follow along with the reasoning that we were celebrating the fact this tiny joint was there at all and it is “stable”.  I know these doctors have seen worse, were prepared for worse, and I AM thankful.

And yet, the fact remains he has limited movement of one thumb. In the scheme of things, it’s not life limiting.  But to a budding musician…it matters.  To a 12-year-old who cannot yet tie shoes…it matters.  To a kid who frustrates easily and who has to use his teeth to open some things…it matters.  They tell us it’s possible a plastic surgeon might help.  We shall see.  More medical appointments are being scheduled.  It seems never-ending.  Because it is.

This is – and will be – his life.

I AM thankful, but simultaneously I tried to swallow down that internal scream I felt rising.  What happened to this poor child? I just wanted to shout it.  How is it possible so much of his system was so affected even before he first took a breath?  Look!  People, look!  Don’t you see?  The damage done is brutal.

And the nearly paralyzing thought: if this is what his bones look like, if even the hardest parts of his body were affected like this…what it did to that soft matter in his brain?  His tiny little growing brain never had a chance.

It was jolting, seeing the bone damage and having one of the UK’s top pediatric orthopedic surgeons talking compassionately while casually confirming what the doctors haven’t really said out loud before (as the other bone issues were found before his FASD diagnosis): this is all related to prenatal alcohol exposure.

Hearing it knocked the wind out of me in a way I haven’t felt in a long while.

Of course, I have known it.  But here it was on screen.  Alcohol was toxic enough to alter the development of his skeleton.  Think about that.

I don’t want to take that in stride.

This defenseless developing person-to-be had no chance to ward off the danger he faced there in the place where he was supposed to be safest.  Now for the rest of his life he will have to fight to be understood.  He will have to fight for his place in this world, in our schools, in our society.  He will have to fight to understand himself.   I felt guilt for feeling frustrated with him sometimes.  For forgetting in the heat of the moment.  For sometimes losing my compassion.  But on this day, I could not look away.  If this is what happened to his bones, what happened inside his head?  Was it panic rising inside me?

I got a bit pushy.  I asked if we were seeing the whole picture yet – or are we going to discover some other skeletal issue in another few years?  Were there other possible issues that we have yet to uncover? Are we looking at the whole child?  To his credit, this very senior doctor had our son jump up onto the table.  He checked his legs, feet and hips for us right then.  A kind nurse whispered in my ears, “If he can walk on his heels with his toes up in the air, it means the structure is ok.  He wouldn’t be able to do that if there was a problem.”  Our son had recently been complaining about his “rubbish right side” when he had trouble learning how to use Heelys.  We had been stunned to hear he thinks of his body in these terms.  It was a relief to know the leg/feet problems are again likely muscle-related and not structural, though it doesn’t make it any less real for our little gymnast.  It doesn’t make his self-perception and frustration any less real.

I became confused when we were asked about follow-up care that is not scheduled regarding the fused vertebrae.  My mind flashed forward, thinking of future possible complications he may face.  My husband and I were barely taking this all in, and we are good at these appointments.  We have had lots of practice.

The professionals had walked out of the room, and our son not surprisingly was sitting looking a bit bewildered.  We had to explain it now in terms that he could understand.  “Remember we have talked about FASD?”  A nod.  “That means when you were in your birth mummy’s tummy she drank alcohol.  Remember?” A nod. (Grasping for the words that don’t get easier to say…)  “Alcohol causes problems for some babies when they are in their mummies’ tummies.  That’s why your hand is different.  It can hurt bones, and it can make some brains grow differently.”  A nod.  “Everybody’s different.  It’s okay to be different.”  More nods, with a “my hand is rubbish” thrown in.  “It’s good that now we know your hand has the right bones in it, and we will see if another doctor can help you be able to use it better.  Isn’t that nice that they have had such good news today?”  A nod.  I felt a little dishonest.  (Not that long ago we were in another doctor’s office, an endocrinologist, assuring him it was good news that he would grow to be at least 5’6″ tall.  And it was. But he shouldn’t have to be grasping at these straws.)

When they came back into the room, I cringed as the senior consultant dictated a letter into a recorder in front of our son.  He used the terms “deformities” and “abnormalities” repeatedly.  The scream inside me grew.  I wanted to interrupt but I didn’t want to mess up his recording.  We usually are quite strict about getting our son out of the room so he doesn’t get overwhelmed by too much lingo.  It’s getting harder as he gets older.  Later (hoping our son had not caught this terminology), I held back to correct the record with the registrar – no we are not foster parents, we are adoptive parents.

We had envisioned a quick visit, but had been in the hospital now for hours and hours.  The waiting room had one obnoxiously loud toy that spat out balls that kept flinging everywhere and a train table with wooden tracks that did not fit in the space.  This manic, frustrating play was a perfect storm brewing, even as my inner disquiet was growing.  I had finally been quite direct with them, saying our son has a disability, his meds would soon wear off, and was there any way to help us get out of there as soon as possible. We knew would be a very difficult car ride home, and it was.  It’s now developed in his head that after a particularly intensive hospital visit he deserves a “treat.” So we stopped in a shop despite the risks that involved for overstimulation.  Thankfully we found some scented play dough-type stuff.  He smelled that and squeezed it during the car ride.  We made it home okay-ish.

Days later, our visit to the Royal National Orthopaedic Hospital is fading again into the background noise of daily life. We are once again at the frontline, addressing the immediate issues, being pragmatic, trying to focus on the joys and steering toward productive thoughts.  Back in our can-do attitude rather than the what-has-happened-to-him mindset.  Trying to keep our heads above water during yet another half-term holiday for which we have not planned well enough.

Seeing the bones scared me, I guess.  When I think of how tenuous, fragile, and mysterious those soft neural connections are, when I remember that alcohol can affect the development of whole parts of the brain…

No one does this on purpose to a child.  But prenatal exposure to alcohol has hurt our child deeply.  It has quite literally affected him to his very core.  And he is one of the luckier ones.  It didn’t do its worst damage to him.

Yes, I suppress the scream. Then I rally.