There are four words which, when said together, never cease to make me see red and turn my mummy instincts on to full. Many because they’re used by other parents, well-meaning persons and medical professionals to try and reassure. .. care to have a guess? It’s just a virus. No, it is not *just* a virus. HIV is not *just* a virus.
And this is one of those times when special needs parents differ to those of children without major health issues.
You see, a virus almost killed my child when he was just 12 months old (influenza A).
For many children a cold is just a cold; irritating, unpleasant and leaves you feeling naff but isn’t actually life-threatening.
To many special needs kiddos, it really is.
In Sam’s case, a virus usually equals high temperature. Viral infections can rapidly lead onto nasty bacterial chest infections, because he struggles to clear the secretions from his chest that comes with a virus. All of this means seizures go sky high.
So when I got home from work and his Nan looked worried every maternal instinct I have went into overdrive and immediately shot a look down at Sam sitting in his comfy p-pod (oh how much do I love that chair?!)… at what point did I learn how many breaths per minute was a normal value for a 3 year old?! Within 30 seconds I’d determined that he was breathing more rapidly and more shallow than usual, he was working a little harder than usual to breath too (barely perceptible changes, but as a special needs mum you just KNOW). Pale, glassy eyes, looked slightly sweaty and clammy. I knew what the thermometer would say even before it beeped with the faster beep indicating a temperature of over 38C.
The inquisition began: Had he had calpol yet? Yes, he had. Seizures? Yes, two big clusters, around 4mins for the first, 9 for the second. Oxygen needed? Yes, both times. Dammit. Every time Sam seems to get a break from the seizure activity, illness strikes and sends him reeling back into Seizure City. Lots of seizures during the evening, the little dude just wanted to cuddle so took him up to bed with me early evening whereupon he snuggled into me while cuddling his beloved teddy, Mr. Scruffles.
Although his breathing overnight was pants, we got away lightly I think – only a couple more seizures overnight than usual. And this morning he’s pouring with snot. POURING. As in, we-need-to-take-out-shares-in-kleenex type pouring. BUT for possibly the first time ever, he seems to be dealing with this one pretty well! Big grins for me and Daddy (best therapy I could ever have that), even if he did insist on wiping his nose down my sleeve when I had a snuggle (I should learn not to wear dark tops); although he’s been quieter than usual, we haven’t (touches wood so so quickly here) ended up in hospital. For Sam, this is a HUGE achievement.
To me it really emphasizes how incredible our kids are, whether special needs or typical – if I had that level of a cold I promise you I would be feeling very sorry for myself, yet despite all his additional issues this little man is refusing to succumb to the virus.
Only a couple of years ago this would have been a nightmare situation involving long hospital stays, oxygen, antibiotics to fight the inevitable secondary bacterial infections and a very, very poorly child.
When Sam was tiny and we practically lived in the hospital, my incredible Mum said to me that it wouldn’t always be this difficult. That as he grew and got stronger he would be able to hold his own against the usual infections of childhood. At the time, we couldn’t even think past that day, let along years into the future. We spent Sam’s entire first winter in hospital, his first birthday too. His second year, it was pretty similar. Then his third year arrived, and we realised that we hadn’t had a stay on the ward in 4 months.
This winter has been a real pig for illness – the delightful Noro virus came to visit, snotty colds have done the rounds as have the usual run of chest infections/hospital visits BUT no actually hospital STAYS.
For the first time, we have managed to get through winter without being admitted :D Cue happy dance! So, although Sam being poorly is utterly poo and rubbish, it’s really emphasized how far he’s come since the early days.
So, don’t lose hope – if you and your little people are suffering, hang onto the knowledge that they are stronger than you know, tougher than anyone else would believe and more inspiring than you ever imagined possible x
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