Next week we head into surgery number 13. This is yet again an elective surgery but one that we hope will better Sawyer’s quality of life. This one for us was one that didn’t take much thought. Sawyer will be getting a VNS (Vagal Nerve Stimulator) or what I like to call a pacemaker, for his brain.

When he has a seizure, they are life threatening.

Sawyer has a severe form of epilepsy, meaning when he has a seizure, they are life threatening. They are also uncontrolled with meds and hard to detect. It’s a terrifying situation to be in, not knowing if this seizure will be too much for him to handle. He is also at high risk for SUDEP, sudden death by epilepsy. Some nights, I feel like I should be sleeping with him just so I can hear any changes in his breathing. His service dog sleeps in his room with him but nothing is 100% effective in detecting seizures. 

The VNS will send an electrical signal to his brain anytime it detects a seizure. It isn’t 100% effective in stopping seizures. However, in many children it reduces the amount, length and severity of the seizure. This alone was enough for us to give it a shot.

As of right now we live life on the edge. We are constantly on the look out for a seizure and plan our lives around the “what if’s”. What if he has a seizure when on vacation? Which hospital should we go to? Maybe he will have a seizure when I am up north visiting my family, how will dad handle it on his own with no support? I know I certainly don’t want to be alone when/if he ever has a seizure when Ryan is out of town. What if I don’t hear the pulse oximeter overnight and I wake up and he’s not breathing. It’s so so much to worry about. I am praying so very hard that this VNS can make a difference in quality of life for all of us.

Surgery is never easy…

No matter how many times he has been through it. It’s hard to go under anesthesia, come out of it and deal with sutures on top of that. Sawyer has a history of not doing well after surgeries. Most recently (although a big surgery) he ended up in hospital for 11 days with pancreatitis and a PICC line. The trauma alone of another surgery and sitting in a hospital room waiting is enough to cause nightmares in the weeks ahead of surgery. I do however feel strongly that although this is elective, it is absolutely the best decision we can make for him right now. I have had no second thoughts and am praying for a good outcome.

• An ode to all the kids using atypical forms of communication

Do you have a child who is nonverbal, or uses an atypical form of communication? Chances are, they are one of the the loudest in the room! I don’t mean by decibels – although some of our kiddos definitely use volume to express themselves, too. I’m talking about how they use every method and mode available to speak what’s on their minds to the rest of us. They are nonverbal, but outspoken!

My son Henry does talk, however due to cerebral palsy and low muscle tone in his core, his speaking ability is impaired. So he also uses a communication tablet (also called a “talker” because it essentially talks for him) to fill in the gaps with vocabulary or concepts when he’s not being understood verbally. But communicating non verbally is so much more than using a tablet.

Henry uses his hearing skills to such a high functioning degree, it can be alarming.

If I’ve said it once, even if I was in the other room “out of earshot,” but the conversation concerns him, you can bet he heard me. He also listens intently, in a way others don’t. I tend to babble on and talk to myself, but my son acts like it’s always a conversation with him. He pays attention to inflection, tone, the anxiety in my voice. He can tell if I’m upset, if I’m excited about something, or if I’m trying to talk out a solution to an issue we’re facing. The type of listener he is says a lot about his personality. Henry is an active listener and, once he’s processed what he heard, he responds accordingly. He’s a compassionate soul, being joyous with the joyful and mournful with those mourning.

My son also depends on his eyesight to communicate. If he glances at someone and turns his eyes down, I know he’s uncomfortable. If his gaze lingers on a person, building, game, toy, friend, he is sizing them up, and deciding how he wants to interact. Henry is an expert at rolling his eyes back and giving side eye, it’s hilarious! I can even tell which of his respite workers he thinks are particularly pretty; he is not shy about giving puppy dog eyes at them!

Henry even uses his memory to communicate what he thinks was worth recalling.

If I ask him to remember an event from school or something a family member said to us two years ago, his memory starts working on the question like a supercomputer. I can only imagine what treasures of memories he’s got locked away. He communicates his love for family, friends, teachers by remembering little things about them, about their character.

And he remembers everything; sometimes this is a blessing, sometimes a curse! Heaven help me if I’ve suggested an outing he’d enjoy and then forgotten about it. Trust me, the boy will remind me!

Personally, I think my son – and everyone’s child with speech impairments – is amazing with how he perseveres every day in order to be understood. Henry is patient, persistent, and can melt you with a smile. It’s both what he says out loud and without words that make him so lovable.

In my research into parent carer emotional wellbeing, guilt frequently reared its ugly head. Parents reported feeling guilty that they hadn’t done enough therapy, guilt about siblings, guilt for taking time for themselves and even guilty about how they’re feeling in the first place. I talk about the many complex emotions parent carers can experience in my book Day by Day: Emotional Wellbeing in Parents of Disabled Children (Link in bio).

In an online survey I undertook on my website, www.affinityhub.uk, 66% of respondents reported feeling guilty about their child’s disability. Although this may seem irrational to an outside observer, there is a primal desire to protect our children at all costs.  On receiving unexpected news it can feel like we have failed to do this. Logically, that is out of our hands and not our responsibility.  

Most parents do everything they can to help their child and yet we can still take on the mantel of guilt.

We can often feel responsible for our child and the challenges they face. I believe this is partly in response to a helplessness that parents may experience when something happens that is out of their control.  By feeling guilty it takes back some control for the parent, however inappropriately.

‘People often use the strategy of blaming themselves to protect their cherished beliefs about the controllability, predictability and justice of the world.  By blaming themselves they are able to hang on to their beliefs.’ “After all, if I am to blame, I could have prevented the…event from happening. If I could have prevented it from happening, then my sense of control would be maintained” (Joseph, 2011).

It is hard to acknowledge that sometimes, despite all our best efforts, we cannot protect our children from difficulties. 

At times, when we don’t know how best to support our child, it can layer on the guilt again. But we can’t be expected to be trained doctors, health visitors, midwifes, social workers and psychologists all rolled into one.

Some of the behaviours or difficulties children face are also part of typical development. However, because for parents of disabled children they already have a heightened sensitivity to their child’s needs, they take on responsibility for any negativity. 

Barrett (2010) states: ‘Parents often assume responsibility for every additional problem their child suffers. If he is miserable it is because as parents they failed to make him happy and if their child is ill, it is because they failed to take adequate care of him. If any or all of these things were to happen to a [non-disabled] child you would, in all probability, simply accept them as things to be expected when you have children.’

Why should it be any different in the case of a disabled child?

Guilt may be exacerbated by society’s expectations and idealisations of the parent role; along with the judgement parents experience. This includes comments from others about their child’s behaviour or their parenting skills. Prejudice and stigma are still rife and negatively impact all aspects of life. 

If there was greater tolerance of difference and disability in society at large; there would be less of a pressure on us as parents to be ‘perfect’.  As the psychologist, Donald Winnicott, wrote in his seminal work, it would be ok for us to be ‘good enough’.

Guilt isn’t warranted, and it doesn’t help parent carer wellbeing. We’re all doing our best in an imperfect system and world; there is no need to add guilt to our mental load.  We deserve to treat ourselves with a little more self-compassion and understanding.

Let go of guilt!

References:

Barrett, M. (2010) You and Your Disabled Child: A practical guide for parents, West Sussex: Woodfield Publishing Ltd

Joseph, S. (2013) What doesn’t kill us: a guide to overcoming adversity and moving forward. London: Piatkus

Before Sam was even born, he was pencilled in to meet the lovely Mr E – paediatric orthopaedic consultant extraordinaire. My own musculoskeletal issues/history meant that his hip development needed close monitoring. Before he was even a few years old everyone’s attention had moved rather further up, to his spine. Specifically, to the slight curve starting to form from the shoulder blades upwards.

I just sat down and cried…

I can still remember how it felt looking at the x-ray on the screen while cuddling my little boy, who was snoring softly in my arms. Then hearing Mr E gently explain that spinal curvature was almost inevitable for children like Sam who have neuromuscular disabilities. The brain just doesn’t send the correct information to his muscles; so they in turn can’t support his spine correctly and the weight of his head just pulls him over to the side. I came home and, as so often in those early days, I just sat down and cried.

Scoliosis can be idiopathic (cause unknown) or symptomatic (as in Sam’s case, where we know why its happening). It is remarkably common, more so in young women than young men. In many cases can be corrected by bracing. Unfortunately, for children like Sam, the scoliosis is progressive and WILL get worse to the point that it will start to compress his organs. It goes without saying that that is not a situation anyone wants.

Over the last 5-7 years, Sam has tried a few braces; a rigid ‘clam-shell’ style one, which he utterly loathed and which was swiftly returned to orthotics. He also had a much more comfortable ‘dynamic orthosis’ lycra suit, made to Sam’s exact measurements using x-rays to determine the curvature of his spine and how much correction is required. It has additional strength bands sewn across the suit to help gently but firmly support his body and realign his spine. While his ‘Up Suit’ doesn’t correct his scoliosis fully; it supports his spine sufficiently to slow the progression of the curve, eases the discomfort it causes and buys us precious time before the inevitable spinal surgery is required.

Sam’s scoliosis has now reached the ‘severe’ level.

As the UK entered lockdown 3, we learnt that Sam’s scoliosis had reached the ‘severe’ level. Surgery was now necessary. The pandemic means that we are likely looking at a long wait, even though it is considered urgent. I’ll be honest, the prospect of surgery is terrifying. However, the reality of what Sam’s future would be like if the curve is left to progress is far worse. I would do anything to swap places with my boy, but I can’t. Instead I’ll have to make do with continuing to marvel at his resilience and courage.

Life can become overwhelming ever so quickly having a child with complex health needs. Things can change in a blink of an eye which need your full attention. There’s no time for relaxing or switching off, because if you do things then build up again so quickly.

You have to plan your time wisely…

Last week we had a last minute appointment which threw my whole week! When you have to plan your time wisely it’s hard to be easily adaptable, but that’s the way it is with a child who sees many different medical teams. It was an appointment we just couldn’t miss. We had been waiting over a year for the appointment due to Covid.

At the moment the rules in place to keep everyone safe state that, it is only one person to attend with the child going to the appointment. This meant that I couldn’t take my youngest who comes everywhere with us! I had to find help at the last minute and I am forever grateful for my family’s help in times like this. My family live 40 minutes in the opposite direction so it meant heading there and then rushing back to pick Ethan up and then head an hour in the opposite direction! It makes for a very long day.

It scared us non the less.

A day missed at home due to an appointment means housework gets missed and the washing pile mounts up! With no time to catch up in the evening due to not being able to make noise as we live in a bungalow. Last week Ethan also had a day off due to a Covid scare at the school. Luckily all OK but it scared us non the less.

When Ethan’s home he needs my full attention. I can get little bits done, but between his and his sisters toddler demands it isn’t easy to keep on top of my jobs.

Then I feel like I haven’t actually spent any proper time with them, just fulfilling their daily needs with food and water! It’s a big old spiral and this week I’m now trying to catch up massively.

I hit a brick wall

It’s hard to keep having the get up and go when your so exhausted, mentally and physically. This slows the process down massively! Yesterday I hit a brick wall. Today I need to climb that wall to get back on the organised path!

Every day brings its new challenges and some I’m prepared for and some really knock me for six! 

Dear Nurse,

I see you. I watch you buzz around the room administering meds and treatments, answering my endless questions, and not blinking an eye at yet another mess to clean up. I watch the way you so tenderly touch and speak to my child, slowing down and spending seconds you don’t have simply to dote on my little one, make sure she is comfortable, and pretend to interact with her favourite stuffed animal.

The needs from your many patients are intense and endless, yet you never leave the room without asking if there is anything I need or anything you can do for me.

You listen with compassion to my concerns and take immediate action to join me in my advocacy

By no fault of your own, you are stuck on the receiving end of my frustration. This is at the hands of doctors who drop balls, are slow to meet urgent needs, or set themselves against me in the fight for my child’s best. You listen with compassion to my concerns and take immediate action to join me in my advocacy. Taking time to ask about pieces of my story and to speak support and encouragement to me.

You remind me that I am doing a good job, my child is blessed to have me, and I am enough. You withhold judgement and choose to be a source of calm in our chaos.

Above your warm smile, I see exhaustion mingling with the kindness in your eyes. I imagine the dozens of hours you have already put in this week. I picture you returning home after a night shift this morning, dropping your keys on the counter as an exhausted sigh finally rises from your chest. Perhaps you slipped into pyjamas, soaked in the wonder of having arrived at your needed time of rest, only to hear the ring of your phone, followed by a pleading request for you to cover a dropped shift later in the day. Regardless of how you came to be here, you are present. You sacrifice. You show up.

While for my family, hospital days are often unexpected and may find us amid life’s lowest valleys. It could just be another day on the job for you. You could cluster your patients and their families into one general category of boxes needing checked in a day and nothing else. The raw reality is that many medical staff do operate this way. But, sweet nurse, you don’t.

You choose to treat our story as unique

As once in a lifetime. You chose a career that allows you to stand beside us in the sacred space of heartache. A place where doors for miracles and moments, that will define our family in one way or another for the rest of time are found. The hours spent in these hospital rooms matter. They form core memories and experiences for families laced with terror and glimpses of hope. Entering into these moments in time you tenderly cradle the weight of these experiences. You are alongside us as we beg for miracles to show themselves woven within the horror story.

Kind nurse, are beauty in our ashes. You are our breath of fresh air. Even when we deal with arrogant doctors and standoffish nurses, apart from you; your compassion is enough to remind us that we are seen, loved, and cared for.

You are changing the world

Whether you are placing an IV, cleaning up another round of bodily fluids, or simply listening to the heartache of a mama watching her baby suffer. You are changing the world.

You are appreciated and loved more than you know.

Sincerely, A Mama Bear of Medically Fragile Cubs

Most of us have been told, at one time or another, not to make assumptions, for they can often be or lead to incorrect conclusions. I see a great deal of wisdom in this. I’m a mom to many children who have disabilities or severe medical conditions. Daily, my children and I are frustrated by those around us. They make incorrect assumptions about my children based on their disabilities or diagnoses.

While many assumptions anger me, I must admit that I have also become quick to assume many things throughout my parenting journey. Through painful experiences time and time again, I have learned to assume that I will have to fight for my children to be treated as human. That every stare is unkind, that a stranger approaching should place me in defence mode, or that professionals we work with will hesitate to see my children as who they are. 

Right or wrong, assuming happens all the time and it makes sense that people say to avoid it entirely.

However, I’m not sure that a complete absence of assumptions about anything ever is something we can achieve as humans. It is part of our nature to fill in blanks about a situation so that we can make accurate judgements and, therefore, choose appropriate actions.  

Rather than asking that you refrain from making assumptions, I have two requests:  

1) That you, as a human being, choose to change the nature of what you assume about disabled individuals until told otherwise.

2) You be a part of changing the regular experiences families of disabled individuals have so that we, too, can begin to assume differently.

When interacting with families like mine, changing what you assume might look like:

• Assuming my children’s competence
• Assuming my children can hear and understand every word you say
• Assuming my children are keenly aware of your body language and unspoken reactions to them
• Assuming my children don’t want personal topics about them discussed without permission
• Assuming my children want to be included, no matter the effort required
• Assuming my children want questions about them directed to them, no matter if/how they communicate verbally or non-verbally
• Assuming my children have age-level intelligence and interests.
• Assuming my children live vibrant, meaningful lives (because I promise they do) and will continue to for a long time.
• Assuming my children hate to be talked to as if they are younger than they are or as if they are to be pitied.
• Assuming my children have unique opinions, talents, interests, struggles, thoughts, and feelings.
• Assuming my children are completely different from anyone else you have ever met, despite a similar disability or diagnosis, and don’t want to be compared to others, disabled or not.
• Assume we do not want your advice about our situation unless we ask for it.

I Know I Am Not Alone.

When I say that disabled people and their families desperately want to have our poor or defensive assumptions proven wrong so often we can begin to assume differently about the intentions of those around us. What if you become a part of changing what we experience daily, that we might:

• Start assuming you are staring because you are admiring our children instead of being rude.
• Assuming you want our children to be fully included and you will do whatever it takes to accommodate all of us.
• You assume a comment that comes across wrong was meant in kindness, was innocently ignorant, and you desire to be taught how to be more informed and aware.
• Assume you will politely ask if you have questions about our children’s needs. How best to interact/accommodate, or want to know better how to have a relationship with our children and our family.

Imagine what a world we could live in if we assumed the best whenever possible. Sometimes, we may not even realize how hurtful or off-base our assumptions are. Even if good assumption happen to be incorrect, the world is not going to come to a screeching halt. The chances are, we can do less harm incorrectly assuming the best that assuming the worst in many situations.

So DO assume…differently.

I’ve always been a bit of a people pleaser and will often keep my preferences to myself in an effort to avoid relational friction. This means the phrase, “I don’t know” is a frequent flyer in my vocabulary, as I push the weight of decision-making onto others rather than speaking up and facing potential disagreement. It is something my husband used to habitually tease me about, as he would ask where I wanted to eat, knew I had an opinion, but I told him I didn’t know. It even bothered him sometimes because he wanted to know we were doing what I truly wanted and I wouldn’t say. After we had been married a few months, he became the person I trusted more than anyone on the planet and I finally began speaking up and telling him that, actually, I really would prefer tacos to pizza.

Our life became a flurry of medical terminology, therapies, hospital stays, medical equipment, and greater, more unconditional love.

Soon after the start of our of marriage, we grew our family rapidly through specialized foster care and adoption and found ourselves parenting multiple children with disabilities and medical conditions. Our life became a flurry of medical terminology, therapies, hospital stays, medical equipment, and greater, more unconditional love for these little people and delight in them than should even be possible! A couple years into our unique life calling, my husband noticed I was once again pushing decisions about little things (like where to eat) onto him, even when he knew I had an opinion.

As he began to poke fun at me about it, I looked at him one day and said “I truly don’t know, I DON’T know! I know it is not big deal to choose what to eat but it feels like my brain literally can’t pick!” I noticed an absolute inability to choose presenting itself in more areas of my life and it seemed different from years past, when I just wanted to keep others happy.

Honestly, I have lost a great deal of my people-pleasing tendencies as I have grown into a mamma grizzly bear roaring in advocacy on behalf of each and every child in my home. I have no issue telling doctors, specialists, and other professionals what my opinion is for my children’s care and standing my ground until they follow through. But ask me if I want to go mini-golfing or bowling and I freeze like a deer in headlights.

It suddenly made so much sense…

It was puzzling to me until one day, an article on the web caught my eye. The article highlighted something called “decision fatigue”. It explained how this concept of inability to choose between unimportant choices was common among parents of children, living with severe disabilities or medical conditions. It suddenly made so much sense.

Day after day, I am asked to make immense, life-changing decisions on behalf of my children. Do we continue treatment or stop? Do we choose one surgery over another in hopes of relief? Which risks do we take and which do we leave? What therapies are worth the effort, and which aren’t? I hardly ever have a break from huge decisions that must be made. Furthermore, when I make them, I make them boldly on behalf of those who depend on me. However, when it comes to the small thing, my decision maker is fatigued…it’s shot. When I say I’m not sure where I want to eat on a rare night out, I mean it. When I say I can’t decide what colour to paint our dresser, it’s no joke. I truly *don’t* know.

I showed my husband the article about decision fatigue and his jaw dropped. “This is YOU!” he exclaimed. Since then, he has shared that he has slowly learned to recognize when I can’t decide because I am decision fatigued. Also, when I am pushing a decision someone else’s way to avoid conflict, despite having an opinion.

When I’m decision fatigued, he takes me at the word of my “I don’t know” and makes the decision for us. When I do know and I am simply avoiding, he gently pushes the choice back my way and asks me again to choose. This enables me to have some control over the trivial, fun things in life rather than only life-changing decisions.

Identifying the reality of decision fatigue as a mom to children with disabilities has been eye-opening to me. It’s helped relieve friction in relationships–especially my marriage–as I can explain that there are times I truly do not know.

I love, adore, and treasure my special children

I may not know what movie to watch tonight or what toppings to ask for on my pizza. However, there is one thing I always, know. No consideration required. I love, adore, and treasure my special children more than I could have ever fathomed. There is nothing that isn’t worth it on their behalf….decision fatigue and all.