…and mine too.
Thanks for stopping by.
I have a question…
How do you squeeze almost six years of life experiences, feelings, fun, tears, challenges and achievements into one concise blog post?
So, for those of you who’ve got to know a little about me through reading my previous posts (or do actually know me!), you’ll know to get your jammies on (i.e. pyjamas) – that’s if you’ve not got them on already – make yourself a cup of tea (I suggest you add biscuits too…yes, you’ll probably need quite a few biscuits..say, like a packet…with chocolate on, maybe?) and then snuggle up somewhere comfy…because this may just well be a long one.
Well, now I come to think of it…it’s most definitely going to be a long one!. Dependent on what time of day you’re reading this, you might actually want to crack open a bottle of wine (or other alcoholic beverage of your predilection) and ditch the tea and biscuits.
So, as time is precious, maybe it’d be easier if you just dip in and out of this whenever the mood takes you – I’ll try to add subheadings to make it easier for you to pick up where you left off.
You’re most welcome to come back anytime.
I’m struggling to know what to include or omit here…so I’ll just waffle on for a bit and hope it flows.
I know, hands down, without a doubt, this is going to be painful for me to write and will undoubtedly reap up some memories that maybe I’d tried to supress. But it needs to be said, as the whole point of starting this blog was to share at least some of our life…and, as a result, give a little hope to people who might need it and a smidgen of enlightenment to others who might be remotely interested.
So, deep breath, here goes….
Once upon a time, this kid was born…
She was loved before I even met her.
But it seems that Hannah’s path wasn’t ever destined to be an easy one.
Following her birth, it was a devastating blow to be told that she needed to stay in the Special Care Baby Unit.
She couldn’t come home. She needed help.
Nothing had been identified that something might be awry during my scans….no-one had noticed (or, should I say, ‘highlighted’) that she had 2 holes in her heart, another heart defect, a cleft palate, no chin, and skeletal issues like small hands and feet and shorter arms than ‘the norm’.
Later on, when I’d mustered the strength to question why these things had been missed, I was just told that they aren’t on the sonographers ‘list’ of things to look out for.
To this day, I still have difficulty understanding this. I’d just assumed that any anomaly would have been noticed and brought to my attention.
Clearly, my assumption was incorrect!.
Still, if I was a sonographer and saw something, even if it wasn’t on “the list”, my conscience would tell me to do something about it, say, like, mention it to someone perhaps?
Anyway, whilst still in the delivery room after inhaling lots of lovely gas and air (BOY is it good!) and a relatively easy birth – Oh, who am I kidding…IT HURT LIKE HELL!!!!!!!!!!!!!!! – and I knew I had to push her out of me as quickly as possible as the umbilical cord was wrapped around her body and she was getting distressed – I was told that Hannah had a cleft palate. Although it came as a shock, I wasn’t overly concerned, I knew that was ‘fixable’. But several hours later, I was informed that Hannah could be “deaf, blind, brain damaged” and a whole host of other things…it really wasn’t something we wanted to hear that day…supposedly one of the most wonderful and momentous days of mine and Hannah’s daddy’s life.
The list was added to as each day went on and professionals began to speculate before they had the facts before them.
That made me a little bitter. It was also pretty wearisome.
We didn’t want to hear any of it and I wondered how much more I could endure.
Now, people who know me well, know not to speculate. However, if we meet a newbie, and they’re brave (or naïve) enough to start guessing, I’ll usually smile politely, whilst imagining my eyes rolling to the back of my head. But that’s only if they’ve caught me on a good day! I’ve found it’s a coping strategy that works very well for me in lots of situations and saves upsetting people. On the days that aren’t so good, I’ll probably just snap. My tolerance level has, most certainly, taken a nose dive these days and I don’t suffer fools gladly anymore. So I’ll have to say my piece (usually) as politely as I can.
No-one plays God with me…unless they’re actually God!
Tests, tests and more tests…and the paparazzi…
Hannah, so tiny and so new to the world, but yet SO unbelievably spirited (that’s my girl!), was tested and scanned, poked and prodded and was then successively formally diagnosed with a plethora of “issues” (for want of a better word).
Lay cosily in a huge incubator and accompanied by all kids of medical paraphernalia, an attentive nurse and two ambulance drivers; Hannah was transported to a specialist children’s hospital to have her heart scanned. Daddy and I followed behind in our car, almost stuck to the bumper of the ambulance, emulating frenzied paparazzi following a ‘celebrity’. We spent several anxious, nail biting hours there and came away knowing that there were, most definitely, two holes and a heart defect. Yet more surgery was on the cards.
My own heart was broken…again.
Both the ambulance drivers and the nurse accompanying Hannah were wonderful throughout the day. Their kindness and compassion made a very difficult day almost bearable.
Hannah was then returned to the special care unit. And we had to go home again, without her.
Don’t sit on the bed…
There was no facility for me to stay overnight with Hannah on the ward of the special care baby unit, and parents weren’t allowed to stay anyway. Plus, I’d discharged myself from hospital the morning after she was born – I couldn’t bear to stay on a maternity unit without my baby being with me. So I spent from early morning until the end of visiting time perched precariously by her side on an NHS stool (long story, will spare you the gory details, but it involved stitches…LOTS of stitches…OUCH!!!!).
My baby was all alone in this big scary world. At night she slept in a tatty looking plastic cot (and not the beautiful snuggly one awaiting her at home), wired up to machines that constantly beeped and supposedly monitored her. Ironically, there were a limited number of staff on the ward that could fit the sats monitor securely enough to be able to monitor her oxygen saturation levels effectively – I am now (rather smugly, I hasten to add) an expert in this field; because the constant alarms, day in and day out, began to drive me completely potty. So I mastered the art of securing it correctly and learned how to re-set the monitors.
Hannah and I had been together for 9 months. I’d kept her safe inside me. And now; now that she’d entered the world, I felt completely helpless, disempowered and that I’d abandoned her somehow.
But I hadn’t…and I never will.
It SO wasn’t in the plan…
During that time, and with a heavy heart, I watched the many other parents leaving the hospital to get on with their new lives; their healthy babies cosily wrapped and strapped safely into their new car seats.
I longed to be one of those parents. This was SO not in the plan.
For my post natal check-up, I was asked to go up to the maternity ward where I was instructed to sit by a bed (but NOT to sit on it – it would be needed on my departure apparently!) until a nurse came to take me to an examining room. In retrospect, I should have sat alone on the floor in the corridor, because by sitting right there I was surrounded by radiant new mothers and their babies; their bedside cabinets displaying balloons and teddies and cards of congratulations. I didn’t feel radiant. I felt very much alone at that moment (much like my baby). Few cards of congratulations came our way in those very early days. Perhaps some people felt that Hannah’s birth required commiseration, rather than it being a celebration of life. But in the grand scheme of things, cards and balloons really didn’t matter.
Following Hannah’s discharge from hospital (it took 3 weeks and a day and a LOT of persuasion from me for Hannah to be discharged), she was then assessed by a Professor of Genetics, who gave her the diagnosis of Cornelia de Lange Syndrome. I’m not afraid to openly announce that that was absolutely, most definitely, one of the worst days of my life…even though I knew in my heart the diagnosis was coming – I’d already done my own research. When I heard the words I didn’t want to hear, the room closed in on me and I thought I’d never breathe out again, that I’d never smile again. It was physically and emotionally painful to hear. It scared me and, maybe this’ll sound a bit harsh, but it felt like both our lives – now so inextricably linked – were over.
But our lives weren’t over. Not at all. It just felt like it at the time. So if you’re reading this as a parent of a child who has just had a diagnosis like Hannah’s, TRY hard to remember this: It’s not over, honestly it’s not.
The SAS move in…
Most of our early days together were filled with hospital appointments or home visits by professionals. There was very little time left to just enjoy being “us”; being together and bonding. It was like living in a glass box or like the SAS had stormed our house and set up a training camp. I can’t fully explain how it felt, but it was utterly rubbish. Life was so busy, I didn’t look after myself, pretty much lived off Lucozade and didn’t eat properly unless someone prepared a meal for me. Our home was not our own. But people were just doing their jobs…some doing over and above what they should have.
…and I’ll never forget them or their kindness.
Nasty Naso-gastric tubes
From the day of her birth, Hannah was fed by naso-gastric tube as she couldn’t suck, had a cleft palate and no gag reflex or chin (called Pierre Robin sequence). I had to learn how to insert the tube safely up her nose and navigate it down into her stomach (making sure I didn’t put it into her lungs and kill her!) and learn how to aspirate the tube, check the Ph levels and feed Hannah safely through it. Otherwise, as I was informed by a rather snooty little nurse that if I didn’t learn, I “wouldn’t be able to take Hannah home”…she was subsequently subjected to my wrath and steered clear after that…most surprisingly, a very wise girl indeed! But reluctantly I learned, because otherwise, as Hannah had mastered the art of pulling the tube out (grr!), we’d have had countless trips back and forth to the hospital and several hours in the waiting room just to have someone put it back in. I really didn’t relish the prospect of that! Even my mother was in awe of my new found skill. She said she would’ve never been able to do this to me (having the emotional connection, being her daughter)…and she used to be a nurse!
I won’t lie to you, it’s not easy, not easy at all. Every single time I had to change the tube I felt anxious and nauseous and it was upsetting to put Hannah through something which clearly caused her a great deal of distress. Her beautifully soft porcelain skin was constantly subjected to rashes from the plasters used to secure the tube. It must’ve been incredibly uncomfortable. But my baby needed it, so I did it….but I never, EVER want to have to do that again.
Eating and “talking funny”
It was then suggested that Hannah would require an operation to be fitted with a feeding tube that went into her stomach. I did my research and then I declined. Forcefully! I recall the term “over my dead body” being used. Now, don’t get me wrong, I KNOW that for lots of other people this isn’t an option, but I’d just about begun to trust my instincts again. I no longer felt as disempowered as I previously had. I knew, with time and support, I could help Hannah to eat orally. It was a leap of faith (but also scary and pretty risky!), but BOY am I glad I listened to myself. Hannah had lots and lots (and LOTS) of choking episodes that were unbelievably scary and this is, and will probably always be, something I’m incredibly mindful of – especially as she displays sensory seeking behaviour and everything and anything goes into her mouth.
Annabel Karmel came up trumps with her baby cookery books and, when not tending to Hannah and all the other stuff, any spare time was spent making nutritious baby puree’s…and drinking Lucozade!
I’ll tell you what; with all that was happening at the time, that baby weight just dropped off me! But I wouldn’t recommend this as a weight loss programme…absolutely not at all!
Despite her cleft making food and drink come down her nose at every mealtime, Hannah dealt with it all remarkably well – and still does. We attended an appointment with a supposedly eminent Surgeon who assessed Hannah and he felt it best to operate. He then went on to add that Hannah would need the services of the clinical psychology department when she became older as she would “probably be small and talk funny” – YES, I AM QUOTING HIM HERE…a surgeon ACTUALLY said that to us!!! and I have no qualms whatsoever about sharing this information, because THIS is the reality of special needs parenting. THIS is often what we (parents of children with additional needs) have to endure. We’re subjected to listening to this kind of stuff pretty often. Needless to say, two days later, after being in floods of tears and nearly having a breakdown because that was THE last straw in listening to foolish, speculative drivel, I wrote a four page letter to him. I wasn’t laughing. Nor was he when he received it. Enough said!.
Another one of our worst days…
As time went on, I came to terms with the diagnosis, cast away thoughts of the life I assumed we’d have, allowed myself to go through the grieving process and ignored the speculators. The holes in Hannah’s heart closed spontaneously and that was a humongous relief. She still has her heart defect, but we’ll worry about that another time.
Then it was time to have her cleft repaired. We had to wait longer for the operation than initially anticipated given Hannah was so small and her chin needed time to develop a little more.
This was going to be a BIG operation, which necessitated the whole roof of Hannah’s mouth being cut open and micro-surgery to connect the muscle and tissue underneath.
I dreaded taking Hannah to the hospital the day before her op was scheduled. That night, I lay alongside her, staring out of the window, listening to her breathing whilst she slept peacefully, counting the hours until it was time to take her down to the operating room. I sensed something was to come, but I couldn’t quite put my finger on what it was.
I’m just relieved that she was completely oblivious to what lay ahead.
Sedation was immensely traumatic for Hannah (and also for me to observe whilst making pointless attempts at calming her). Despite still being so tiny, she fought hard against it. I should have anticipated that; as the previous night required 2 nurses, her daddy and a doctor just to pin her down safely in order to take some blood samples. She had unbelievable physical strength even at such an early age. I locked myself away in the toilet and sobbed uncontrollably. No baby should be subjected to all of this. It just wasn’t fair.
I paced and paced until being informed that the operation went well. However, Hannah was still bleeding as she was returned to her room. As the nurses made attempts to make her comfortable, she began haemorrhaging severely and subsequently choked on her own blood. The monitors began to flat line and sound their warning calls.
There was blood everywhere.
Although time has passed, I will never, EVER be able to erase what happened that day. The noises, the look on Hannah’s face, the blood, the overwhelming fear. It’s all still fresh and I wonder whether that’ll ever go away. But whilst Hannah’s cleft was reopened when she was resuscitated, I’ll be eternally grateful to the Specialist who just happened to be passing her room that day before the crash team arrived.
He saved my baby’s life.
I remember vividly my husband and I being ushered into a tiny waiting room and listening to a nurse teasing the other nurse in the corridor who was caring for Hannah at the time “it’s another one of yours that’s crashed, then eh?, haha” she said. I wasn’t laughing. Nor was she later. Enough said.
Hours seemed to pass. It could’ve been minutes though. We weren’t counting. We were too busy holding each other’s hand, sat immobile, waiting for something, anything. We were then taken back into Hannah’s room where we were told by a Doctor that she’d “be fine” (they’d said that BEFORE she went to surgery, so why the hell should we have believed them now?). A guy who didn’t introduce himself, but we assumed was a Doctor, informed us that Hannah would be taken to the High Dependency Unit and said that I should “smile” and then he held his thumb and forefinger up to his mouth in a gesture which suggested I should do as he said. Did he SERIOUSLY think that smiling was remotely on the agenda that day when I’d just watched my child die before my eyes? I wasn’t smiling. Nor was he later. Enough said. Although I understand he subsequently received some training on communicating with families. I really hope it worked.
For parent’s and carers of a child with additional needs, it’s hard enough being on the emotional roller coaster you ride and all the other countless stuff; but having to deal with some of the people mentioned above makes life all the more harder. Much harder and needlessly so. Sure, they may consider that they’re in the job to help people, but really…do I need to elaborate further? I think not. It REALLY doesn’t instil confidence and sadly other professionals then tend to (initially) get tarred with the same brush.
Whilst Hannah possesses rather a lot of autistic traits, displays sensory processing disorder and self-harming behaviours (more than likely linked to her syndrome), I now know in my heart that she has an attachment to me. I doubted that for a long, long time – she couldn’t seem to tolerate being touched or held for any length of time, nor could she acknowledge me or look at me…and I had to wait for what felt like an eternity to receive a hug…but when it came, Oh M G!, that was the BEST hug I’d ever, EVER received.
I now even get the odd spontaneous kiss – heavenly!! – Although sometimes it’s followed by a bite…but hey, you can’t have everything, right?
Every single new development of Hannah’s is celebrated and, because everything comes incredibly slowly, I have the luxury of noticing these progressions.
But, despite all her ‘difficulties’ and little idiosyncrasies, Hannah has a zest for life that I’ve never known in any human being. Her personality shines through…and boy, she’s a feisty one!
So what now then?…Make way, adventure kids’ arrived…
So now, as time has passed a little, we get on with our life and try our utmost to enjoy it. In fact, Hannah has a FAR better social life than I do…I’m often just the taxi!
My kid; my wonderful, kooky, scrumptious kid, is developing – albeit incredibly slowly – but that doesn’t matter.
Over the years, Hannah has been given lots of labels from other people: dysmorphic (oh, THAT gets me every time – IT. MAKES. ME. FIZZ!!!) – my riposte (in my head) will always want to be…”well, you’re not exactly a looker yourself, now are you love? – for a start you need to lose some weight, wash your hair and get your teeth fixed” – but I’d never say that. Well, it may actually depend on whether I’m provoked to the point where I can’t possibly contain myself anymore!. She’s also been labelled as significantly developmentally delayed, severe neurological disorder, learning disability, no speech, learning disability, hearing impairment, cleft palate, rare disease, pierre robin sequence, fixed flexion contractures of the upper elbows, disabled, Bilateral SVC, sensory processing disorder, special needs, autistic traits, “not like a normal child” (say that again lady, and you’ll regret it….I ABSOLUTELY PROMISE!!). Oh, I could go on and on and on with all the other labels…
Most (but not all) labels, to me now, I tend to compare with expletives…they’re just words, nothing else. They have very little (or indeed, any) impact (positively or negatively) upon our lives. You can choose to be offended by a word because you’ve been conditioned to believe that it’s offensive or you can take it for just being a load of letters, that make up a word, in a whole long bunch of other words.
Some of my own ‘labels’ for Hannah would be: precious, scrumptious, feisty, unique, cute, curious, exhausting!, fearless, adventurous, captivating, non-compliant (I think she’s got that from me!), beautiful, magnetic (other kids seem to be drawn to her – especially boys!!!), funny, sometimes naughty and a whole lot more.
I believe in her. I see her for who she is…Hannah…a unique little individual in her own right.
She’s not a diagnosis. She’s not a label. She’s not a report on a piece of paper. Her syndrome and disabilities aren’t contagious. She’s a kid. My kid. Whom I’ve been entrusted to care for and protect. Her disabilities absolutely don’t define her. Physically, Hannah’s the size of a typical 3 year old (even though at the time of initially writing this post, she’s almost six years old). Her syndrome affects pretty much every aspect of her life – from mobility to her understanding of the world around her – but this doesn’t deter her from trying out new things and exploring her surroundings. Nor does it often deter me from encouraging her – as long as all the right support systems are in place to ensure she’s safeguarded from harm.
Hannah has no speech and uses only one sign spontaneously (“more”). But is copying more things when she’s in the mood and now gives lots more eye contact (dependent on her environment). So I remain hopeful that she can go on to learn new things.
It pains me when she’s ill and can’t tell me how she’s feeling or locate the pain with her hands. In fact, it doesn’t just pain me…it scares me. We’ve had several dashes to the hospital – one episode resulting in Hannah being treated for suspected meningitis. I no longer hesitate in seeking a medical opinion (or a second one, if necessary!) or worry about anyone assuming I’m an overprotective mummy…people’s opinions are immaterial…my girls health and wellbeing is paramount.
Hannah attends a school for children with significant additional needs. Initially I found it hard to accept that this was the right environment for her, but I’ve totally come to terms with that now. The staff are pretty great, I get the impression that they just “get her” and that’s one less worry, because I don’t have to explain on a regular basis all of her little idiosyncrasies.
I make every attempt to give her as many opportunities as I can (despite my own fears and reservations) and she throws herself into each of these with such overwhelming enthusiasm it makes my heart ache with pride.
In our world, kids are kids, and that means that Hannah shouldn’t be excluded from doing things that any other average kid would get to do….and, in fact, she’s probably done far more than some: My kid’s been on a zip wire, been caving, winched up a tree, had swimming lessons (albeit unsuccessful at this juncture, but we tried), done archery, been in a canoe, learned how to make fire, flown in a plane with Santa (SANTA!!! *jumps up and down excitedly*), met a celeb, taken part in recording a song – sure, she’s non-verbal, SO WHAT?!!, been horse-riding, can be spotted on You Tube doing a parody of Gangnam Style, been The Virgin Mary in a Nativity play, had articles published about her in newspapers and magazines, been mentioned on the radio, had her life read about by thousands upon thousands of people all over the world, inspired people to do some totally bonkers things (like her Uncle walking 500 miles over the Pyrenees and her daddy taking part in a marathon with an injured leg!) to raise money for her conductive education sessions. Now, how many kids can say they’ve done all this just in 5 and a bit years?
But whilst our lives have completely changed, whilst I lost my identity for a while and didn’t recognise the woman I was looking at in the mirror, whilst we’ve had some unimaginably difficult times; would I wish for our lives to be any different? Well, the answer is yes…and no. Yes, in a heartbeat I’d give anything and everything for a cure for Hannah’s syndrome. Yes, I’d be able to stop worrying about the ‘here and now’ stuff and what the future could hold. No, just because life without Hannah would be absolutely unbearable.
The possibilities are endless
So, what does the future hold?
Well, I have absolutely no idea.
Nor does anyone else, for that matter…although they might want to try and guess.
But, you know what?, thinking pragmatically, would any of us REALLY want to know what the future held?
Let me give you examples…
If someone told you in 27 days’ time at 8.35am on the way to work, you’d be in a car crash and sustain significant injuries which will affect you for the rest of your life. How would you feel about it?.
Or in 5 years 3 months and 16 days you’ll be diagnosed with a terminal illness and end up in a hospice…would you REALLY want to know?
Would you want to know that on Tuesday next week at 4.25pm your wife (or husband, for that matter, let’s not be gender specific here!) was going to run off with the milkman? Maybe some of you WOULD want to know…that’s possibly dependent on whether you like your spouse, whether you like having your milk delivered or whether you fancy the schlep to the supermarket – bear with me, I’m trying to lighten the mood here!.
Would your quality of life at this moment be any better? Would you ‘Carpe Diem’? Or would you turn into a quivering wreck and just give up on life?
So, would I REALLY want to know what the future holds for Hannah?
I get asked what the prognosis is quite often.
Sure, anyone would want to know the good stuff. But would they want to know the not so good stuff? The traumatic or the worrying stuff? I think, perhaps not.
The same goes for us here at Broccoli HQ.
But whilst my crystal ball is no longer in operation, I know this…
She unknowingly brings joy to SO many people…and she is loved beyond words.
Like Edwyn Collins said following his brain haemorrhage…”The Possibilities Are Endless” (watch the DVD – beautiful, inspirational)…and, so too are the possibilities for Hannah.
I know that whatever time I’ve been afforded with Hannah, I’ll make sure that she feels loved. I’ll make sure that she’s given opportunities to have fun and learn new things. I’ll protect her and make sure she’s as safe as she possibly can be. I’ll be her voice and advocate on her behalf…and I’ll make damn sure that she’s given the opportunity to SHINE.
…and I’ll try my hardest to hold her hand along at least some of her journey.
So, if you’re reading this and you’re a parent of a child with additional needs and are just starting out on your own journey, know this: life may well get pretty rocky and test you to your limits – you’ll undoubtedly have some overwhelmingly challenging times ahead where you’ll shed so many tears you feel you’ll never get out of the darkness and you may feel like you can’t go on anymore – but if you can manage to change direction from the life you anticipated you’d have, ditch all those aspirations you previously had for your kid and buckle up for the ride of your life, you WILL get through it. Sure, you’ll have bad days, but you’ll hopefully become stronger than you ever imagined. You’ll be thrown into a whole new other world that opens up different opportunities and experiences. You WILL breathe again. You WILL have fun. You CAN have a beautiful and enriching life with your kid…but you just need to look at life from a different perspective. And remember, you’re not alone…there’s lots of us out here on our own journey, who (kind of) have an understanding of what you’re probably going through: Don’t ever be ashamed of asking for help, don’t EVER be scared of expressing how hard this journey is and don’t hesitate in reaching out if you’re feeling lonely…because I promise we’ll catch you.
So, my lovelies, that’s all for this post.
There’s lots of other stuff I could have included, but seeing as I’ve almost written a dissertation here, it’s probably best if I stop now.
Well done for getting to the bottom…I hope you enjoyed your biscuits…or your bottle of wine…or both!
Thanks for stopping by.
Until next time
This post is dedicated to Hannah. My love. My world. Who taught me what unconditional love was all about. And without whom, life wouldn’t be worth living.