“I shouldn’t complain but…” – Living with a chronically ill child

[written by EB]

As you might be aware this blog is the sum of several lovely ladies blogging.  I will own up that I am the individual behind the sleep-deprivation-induced typo “sleep decoration” which has stuck with our group as a little in joke and which we now invite you to join in with and understand.

Sleep decoration is that particular sleep-deprived state where exhaustion has snuck into your core, into your bones.  When you are so tired that your eyes sting and you silently curse any one that knows the wonder of a full night’s sleep. Sleep decoration is that fuzzy world that many parents inhabit:  bumbling through everyday life, trying to function, work and care for our children.

I am sleep decorated.  Extremely sleep decorated.  This is due to fact that my wonderful and energetic 16 month old son suffers from complicated food allergies and intolerances which cause chronic colitis and inflammation in his bowels.  Most nights he is simply in far too much pain to sleep properly.  This is not his fault, it’s not my fault  it’s not my husband’s fault (despite my feelings at 3am when I am peeling myself out of bed for the third time and he is still soundly sleeping); this is just how our life is. When I talk to others about my son’s allergies people often underestimate the impact that they have on our lives.  Apart from being ghastly pale and occasionally sporting ‘allergy shiners’ (dark sunken circles under his eyes) he looks physically well and certainly has enough energy to run circles around me – so why would people believe our life can be difficult?

Some days are okay, in fact some days are brilliant and symptom free,  but then then I have some days where I am unable to comfort my son, when he is so much distress that he pleads with me with desperately sad eyes to ease his pain, to help him understand why he hurts so much.  Days where we find blood in places it shouldn’t be and he thrashes against my arms as he just doesn’t know what else to do with himself.  Whilst heart breaking and difficult this is we medicate where we can (he can’t always tolerate medicine) and keep him distracted and busy where possible.  Nights are where things become really difficult.  There is little to distract him from his pain and he desperately wants to sleep most of the time but is unable to due to the extreme discomfort.  He can be awake and in pain for hours at a time or just wake frequently, crying out, requiring comfort and reassurance to get back to sleep.

On top of this we have the impact of a restricted diet for a hungry growing boy.  My son is on the 99^th percentile for height and never stops, never sits still, which means he is constantly requiring food.  He can only tolerate five safe ingredients, all of which are low fat,  so we struggle to get enough calories into him during the day to sustain the night. The poor sleep is therefore worse as he also requires milk during the night.  When symptom-free this is a quick and easy affair but when experiencing a flare up this can be just another wake up with crying, writhing around and distress.  I think unless you have been in this situation it’s so hard to describe the heartache of holding your child, being unable to comfort them.

You look at medical literature describing allergies and you will read about skin irritations, bowel issues, distended stomachs, vomiting  and sometimes there may be a throw away comment about disturbed sleep.  All these symptoms are concerning, and obviously distressing for the families involved, but in my experience (current and past) disturbed sleep is the one that impacts on your ability to cope with all the other horrific symptoms.

I am a fan of routine, structure – and sleep!  We have always followed a routine for my older daughter and this helped us diagnose her intolerance to cow’s milk as she was equally unsettled until we eliminated it from her diet.  But what happens when you have eliminated all that you can and even hypoallergenic formula seems to cause pain and distress?  The feeling of helplessness as a parent at this juncture is just indescribable and then when you add it to the fact that your brain won’t function properly due to the sleep deprivation, life is too dark and murky to see the next steps.  I’ve been told so many times, “you can cope with anything when you have sleep”, but what happens when you have to cope with everything, and sleep is the one thing you can’t have?

Sleep deprivation, in the dark corners of the world, was and is used as a form of torture, used to break someone’s will.  But here and now parents of chronically ill children are subject to the same treatment by these nonetheless desperately wanted and loved children.  I’m not going to lie to you, some days I want to run away and hide (especially on food trial days when I know we are likely to have days, if not weeks, of awful nights followed by challenging days).  Some days I’m close to tears, taken hostage by exhaustion.  Most days, and this is getting more and more frequent now my son is receiving the best possible care, I pull positivity from strength I did not know I possessed, I get through the day and take each challenge one small bite at a time.

I am lucky: I have an amazing husband, fantastic family and a great support network of real life and virtual friends. I have also accepted that life has had to change and I am currently making adjustments to accommodate my hazy and bumbling state.  If you too are struggling to maintain any semblance of a normal life whilst caring for a high needs baby, here are some things I thought I could share that might help.

1. The obvious stuff (that we don’t always do)

Take help where you can, heck, take sleep where you can!  Lean on willing family and friends who probably feel helpless;  they most likely don’t know how to help so tell them!  Allow them to take other children out for the day, allow them to baby sit while you take a nap -whatever they can reasonably do to help, let them.  Get to bed early when you can and try to lie in (my husband takes the children downstairs on a weekend and I grab an extra hour or so).  Do whatever you can to survive and get through but know you don’t have to do it by yourself.

2. New connections

My son’s allergies are fairly all consuming.  Being a parent to two young children can be tiring enough but when you add in hospital appointments, chasing prescriptions, planning food trails, doing my own research – it doesn’t really leave much left in the energy bank for a social life.  Evenings I’m too exhausted to do much and I am often required to comfort or feed my son any way.   But, connections to others are important – for your sanity and for your self-identity – yes, you are a parent but you are still you too.  I go through phases of accepting that my social life has changed beyond all recognition (I can’t eat or drink normally due to breastfeeding and making sure my son can tolerate my breast milk) so I have had to make changes.  For example, I make plans to see friends during the day at weekends, sometimes with the children, sometimes leaving them with my husband and escaping for a few hours.  I missed my evening sewing class that I used to attend after work so I have invited friends to sew one evening a month at my house and we are learning from each other, meaning I am on hand to feed/settle/comfort baby boy whenever needed.  I have stopped hoping for a night away with the girls (something I used to do four times a year) for the immediate future and we currently trying to figure out some date nights in the house for me and my husband.  We have attempted a few date nights out but sadly the grandparents have struggled to settle my son when he wakes so we are called back and our nights are cut short.  This is okay: it’s just a matter of being creative with our relationship and looking for new connections.  When you have a baby you accept that life will take a while to settle back down, but when you have an chronically ill baby this period is extended indefinitely, something that friends or family sometimes need a gentle reminder about. It is possible to work around it though and, if it’s explained to them, people do understand.

3. Acknowledge your feelings

As a parent one thing that I have really struggled with is those feelings that bubble up in the middle of the night, after months and months of broken sleep how you deal with that little niggle of resentment that you are not allowed to talk about, not allowed to acknowledge.  Here is this little beautiful creature, who is your absolute world, who is robbing your ability to function!  Even now typing this I feel  like I am admitting something dreadful.  He’s the one in pain, it’s his stomach that bleeds not mine.  And here I am complaining about being tired…. What an awful mum I must be! In fact, I’m not awful, I’m human and humans need sleep!

It has taken me a long time to accept that some days I will be functioning on a three hours of broken sleep, that some days I have to bite my tongue when someone complains of a bad night’s sleep, to let go of that feeling of jealousy when my husband spends three nights away in a quiet, dark, comfy hotel room for work.  I do go through periods of being incredibly emotional and where I struggle to cope, I’m not superhuman after all, but I lean of my family and friends and on online support forums.  This isn’t something that has come naturally or easily to me – I have had to make a conscious and mindful effort to be truthful with the people closest to me.  I go to work four days a week where I have to (try to!) be professional and competent, something that is not always easy when you’ve had a few hours of broken sleep, but I wear my smile as part of my work uniform and try be positive.  What I have learnt over the last year and a half is that this is okay,  it’s a social requisite to respond “fine” when asked how you are, but your friends, your true friends, want to know how you are really feeling . That release is not an acknowledgement of weakness, it doesn’t mean you are not coping, it doesn’t mean that you are blaming your child or loving them any less, it simply means that sometimes the burden of responsibility is too heavy for your shoulders alone at that particular time.  Whatever you need to do to release some of the stress and emotion that inevitably builds up from battling each day with allergies and intolerances, be it cry, laugh, have a pint down the pub – do it, and don’t make any apologies for it.

When we stayed in hospital on the children’s ward we saw many critically ill children and every day I remember them and I count my blessings that no matter how difficult day to day life can be it could be a lot worse.  Many people have said, “at least he is well”, and yes, he’s developing incredibly well, growing and he’s an amazing little character, no-one should ever doubt that we know how lucky we are to have two beautiful children.  This leads me back to my title: yes we are fortunate in so many ways and I really shouldn’t complain. BUT sometimes acknowledging that life isn’t particularly easy is healthy and helps me to cope.   I’ve only just started to give myself permission to do this and I hope if you are the parent to a child with allergies, or know one, you give yourself or them permission sometimes to break that uniform smile and acknowledge out loud that it is hard.

It’s not always easy but we will always dust ourselves off and carry on – we have absolutely no other choice – but that little release, that little bit of support, will go a long way in helping us to do so.