I have four children with additional needs. I used to say "3" but #1 son has more recently developed problems of his own. Nothing major, but foot surgery (both feet) for permanently dislocated toes due to a connective tissue disorder is definitely not run-of-the-mill.
The appointments for my brood, plus my own (I have two autoimmune diseases, osteoarthritis and pretty severe allergies) and my husband's (glaucoma, the genuine full-on kind with optic nerve damage) are utterly overwhelming at the moment. We average four appointments a week between us. Some local, some in London. And all of these understandably involve my participation - although I am excused many of my husband's eye appointments. I am invariably planning appointments, notifying schools, ferrying children around and attempting to ensure clinic letters are communicated amongst professionals involved with our family. It's a full-time, thankless job, which prevents me taking on alternative employment.
Knowing that there are many others worse off, and grateful for the support we
I rarely post about such things, I don't consider myself a Special Needs Blogger, I write about anything that affects me/our family, or anything that interests me. But sometimes, all this becomes so totally and utterly overwhelming, that it spills out - no longer well-contained or controlled in a chaotic, anxiety-inducing mess.
The anxiety is mine, kept firmly under wraps 95% of the time as I focus on the essentials, the necessary parts of caring for a family with many additional needs. But it doesn't take much to precipitate a bubbling over of what is always there, simmering away.
It might happen due to intense frustration over the professionals who are incapable of recording important details accurately in clinic letters, which then get sent out and cause untold problems locally. Or the stomach churning anxiety because the GP surgery saw fit to cancel off all your children's repeat prescriptions when the GOSH clinic letter was sent by the Indian typist to Ipswich, AUSTRALIA and they haven't received confirmation that the children still need those medications. (And yes, this really DOES happen, and you would be surprised how often - we've had months of letters sent to the wrong continent.) Or because items are missed off a medication list in the clinic letter because the consultant was pushed for time and scanned the list a little too quickly, or when an antibiotic is accidentally switched for an immunosuppressant because the typist became muddled - after all English is only their second language and "Azathioprine" and "Azithromycin" not only sound the same but are often prescribed by the same doctor to his patients!
I could go on and on, the number of "administrative errors" is phenomenal, and dangerous. These days it's up to the parent/carer to keep track of everything or it all falls apart. And when that is one person juggling SIX people it's little wonder I feel like I'm losing the plot at times.
The problem is - if you don't take action and correct errors, you are deemed to have accepted and supported that information. And then, if in the future you DO challenge it - then YOU are the one at fault. This might seem really far fetched, but it isn't, I can assure you. The troubles we have had in the past because I wasn't switched on sufficiently to the massive plate-spinning task involved in managing my children's care would fill a book.
Maybe they will one day.
So after appointment number three last week, I was really not prepared for school calling an ambulance out for son #2 which you can read about here. We got through it, and I regrouped, slammed the lid firmly back on the simmering pan of churning anxiety and moved on to the next focus - getting son #3's stoma sorted. It goes without saying that nothing is ever straitforward, and whilst we are THRILLED he no longer needs his feeding tube I could have done without the hole refusing to close. And his stomach deciding it was a good escape hatch through which to herniate....
Are you getting the gist of my week? As you can see it begins to take on comic proportions around this point... in a sad-but-true way of reality failing to keep pace with expectations.
So on Friday, I had two children in tow as we took the
We did make the surgical review (yes, he needs surgery, and a pre-op assessment, so two more trips and probable a review post-op as well) and we went for lunch, but it was obvious H's back was really, really sore again. And my heart sank as the nurses at GOSH insisted we jump in a hospital car and head to UCLH A and E and get him checked. Missing our appointment. (Another GOSH trip for the future)
The reality of caring for complex kids, (even more so when there are several rather than one) is that it totally takes over at times. And however much you would like to wave the normal flag and be part of that team there will always be a huge chasm between you and them. Days like Friday make that gap so much wider, you feel there is actually no longer any point trying to bridge it. The trouble is, no one points you in the direction of "your" team. And if you have kids with no overall diagnosis, you don't belong anywhere.
But THAT is the point that you really need others to see, to KNOW that however farcical the situation might seem, this is your reality. This is really how life is right now, denying it or attempting to see the funny side just isn't going to cut it.
Because really, it's not very funny at all.