Dear Asthma
You creep through the darkness in the middle of the night.
I know you are lurking there, clinging onto a cold or lingering off a cough. And I wait for you.
I wait for you to wrap yourself around my son’s chest and squeeze him tight. I wait for you to compress his little lungs and make him struggle to breathe.
And I fight back. I flood his little body with drugs to push you out. To stop you ravaging it.
I lay awake next to him, listening to him breathe, watching his chest sucking in the air with so much effort.
This time you caught me off guard. You haven’t visited for 7 months, not with all your might. I got complacent, hopeful even. I fooled myself into thinking you were leaving us alone. That maybe my son was getting stronger and had banished you for good.
So I reduced his medication, rested on my laurels and then he paid the price.
You came the same as always, from nowhere. In the morning he was healthy and happy. By the time darkness fell, you were taking hold.
It’s a lonely place in the middle of the night. Worrying. Watching.
I sit and reason with myself. If we can just make it to morning. If we can just prevent another hospital trip. If we can just handle it oursleves.
And we did. 10 puffs at a time. We made it.
But you are unpredictable. You are not ‘just’ Asthma. You are deadly.
So in the morning I reflect. I reflect on my midnight decisions, how I battled between keeping my son safe and making him spend another night in A&E, tainting his memory with more ambulance rides, more monitoring and masks. I reflect on a video I took of him that shows his little body fighting so hard. I reflect on whether my instinct is correct, if I can trust myself to make the right call at the right time.
You’ve gone now. To lurk around another corner. But you’re still there in my thoughts, taunting me. Telling me you’ll be back again. Telling me I need to be ready and I need to take you seriously.
So, Asthma, I’ll be ready. I’ll be working hard to stop you visiting again.
But when you do, in the darkness, I’ll squeeze my son tighter than you can. And I won’t be afraid to bring in back up.
Regards
Emma
I have no real experience of asthma but my older brother had it when I was younger and I remember growing up surrounded by inhalers and his constant wheezing. It must be so hard having a little one with asthma and I’m sure at times you feel so helpless x
I think it’s something that affects the whole family. I had Asthma as a child but my sister had ot more severely and I remember very clearly how many holidays and events were impacted by her attacks,
Thank you for expressing the loneliness and the difficult choices that we have to make in the middle of the night. xx
Thanks Lisa, I’m glad it has helped give a voice to these hard feelings we face.
Ahh I can sympathise with this. My 12 year old has spent many years of his life since he was 2 in and out of hospital with terrible asthma attacks and it’s looking likely that my youngest is asthmatic too. It’s terrifying when they have an attack, I agree to feeling helpless, it’s just a case of trying to keep on top of it and avoid trigger. We have adapted our lives to try and make sure that Lewis stays as well as possible, its always worse at this time of year though! #Brilliantblogpost
I think that’s all you can do. Trying to be procative takes away some of the feelings of helplessness but as you know, you still feel the same fear every time. Sorry to hear your little one has it too.
This just made me cry, this is my life! Every word, in the middle of the night making that decision on what to do when you are exhausted, my little boy is only 3 and to see him go through the constant hospital admissions, hooked up to machines in pain and scared. Asthma is just a living nightmare that you can’t escape from
Ah Karen, sorry for making you cry but I’m glad it resonated with you! My son is 3 too and it’s horrible how much they’ve been through in their short lives.
So reassuring to hear a similar tale. The middle of the night is a lonely place watching, waiting, counting, hoping and trusting yourself to make a good decision. This reminds me I’m not alone. There’s an army of us working hard – and keeping watch until the next time. Doing a good job!
I’m glad you found it reassuring. I know how it can feel like you are the only person feeling that way and wrestling with those decisions. We’re all working hard and doing our best.
That anxious feeling of…do we need to get you to A&E or are we going to get through this tonight ???…. Like you we’ve not had an attack in months, we’ve even had my daughters preventers reduced, which I was both happy yet worried about. She had pneumonia and a collapsed lung at 12 months old and has had asthma ever since, her only trigger is the weather from Sept through to March is usually horrendous,or catching Tonsilitis as her tonsils are huge without that, but so far(dare I say it) she’s not had an attack, I have those feelings of yes she’s getting over this she’s getting stronger but still my heart stops when I hear cough as this is her sign she doesn’t wheeze never has she just coughs and coughs and can’t get her breathe. She is now 6 and this is the first autumn/winter we’ve not had an attack, visited hospital or needed steroid tablets, it’s a scary thing to watch and horrible trying to decide if we need to get help, Thanks for sharing Hun, and I hope your little man goes attack free for a long time now, xxx????
Yes, it’s always a case of holding your breath every time they get a cough or cold. You so want to stop them having so much medication all the time but then there’s the worry that brings. It’s great to hear your daughter is doing well this Winter and I’ll keep my fingers crossed for you that it stays that way xx
I am not a mum who watches her child with asthma I am the child who has asthma lucky my children don’t as yet but they are still very young but I remember watching my mum and dad as I struggled to breath nd this really made me think that there is not enough awareness of asthma nd it’s nice to see other people in the same boat I have chronic brittle asthma Wtich is horrible I remember watching my dad cry when I was 18 because there was so many tubes and oxygen marks helping me breathe this is still my worse memory seeing my dad cry and how scared he was I wish ur son all the best
It’s so hard to see your children, who you love with all your heart, in that situation. It’s so scary and I know how your Dad must have felt. Fingers crosses your children manage to pass it by. Thanks for your best wishes.
Can I please say this.
As an adult I have Type 2 Brittle Asthma. It means I crash with no warning and have to reach resus within 8 minutes of it starting or I will move to silent chest.
My mum would hold me at night whilst the seagulls cried out in my lungs. She would give me multiple puffs of ventolin in a spacer and I would wheeze my way back to air.
The result? Thickened lungs and brittle asthma in adult hood – way more drugs than would have been needed had I had controlled asthma as a child that gave my lungs a proper time to heal. I could go 12 months between attacks age 6.
They didn’t disappear in any 7 year cycle. There was no grains and no dairy in my life.
Take your child to A and E and make sure he heals after every take – increase his chances of living well in adulthood.
Thanks for your comment Aly. It’s important to know about the long term effects our actions could be having. I’m sure your Mum thought she was doing the best for you, like all of us do. I’m sorry it has turned into such a life altering condition for you and I appreciate you sharing your experience in the hopes of stopping my son getting there.
I read this and thought you’ve seen me, you’ve noticed me watching in those dark lonely worrying nights, you’ve seen me wondering “did I make the right decisions, do I need to do anything else to prevent another attack”. Thank you for writing such an honest, heart melting piece. It’s so tough when Asthma comes into your life and creeps up on you. God bless you and your little lad, hugs from me the mummy of 2 boys who have Asthma and Hugh fives from my son’s to yours xx
Ah, your comment really touched me! I’m so sorry that you have those dark, lonely nights too but happy I have captured the feelings. Thankyou x
Oh I know what this is like. It’s awful isn’t it? We too get complacent sometimes when it hasn’t been bad for Pickle for a while…and then it rears its ugly head again and it’s terrifying. I hope J grows out of it soon xxxxx
Wow it feels like our story. This really resonated with me. This is how we live our lives and we had this very experience last Wednesday night. What a precise analogy! I hope as times passes, we’ll one day look back and have won the battle!
I’m sorry to hear you’ve been through the same this week. It’s really horrible isn’t it. But I’m glad the post resonated with you and I hope we both win the battle.