None of these things are your fault, or mine; they are no-one’s fault. James is who he was born to be, who he was meant to be, with all of the challenges that that brings along with all of the joys that we experience with him as well. For there to be fault there would need to be failure, inadequacy, lack… there are none of those things regarding James, not from you, me, or anyone else.
James has a mix of our genes, and those have formed him into who he is. To be blamed for any differences that this blend has created would be as absurd as finding fault in parents whose child has red hair, or is shorter, or can’t sing in tune, or is left handed…
James’ additional needs are not your fault, but they are what make you shine! We didn’t expect that our child would have additional needs, or that these would be added to over the years, but the way you fight for him, care for him, love him unconditionally even when that might seem hard, does you great credit.
You fight for him… When things aren’t happening quickly enough to give James the support that he needs, you are filled with a strong will to champion his corner, to call out poor performance in professionals, to challenge why things are taking so long. You are better than me at asking the hard questions, putting people on the spot and forcing them to act, bringing about positive change for James and our family.
You care for him… There is a lot of care that James needs, care that would be much less for a typical 16-year-old. Whether it’s the whole range of personal care that needs doing, or sitting with James when he’s had an epileptic seizure to make sure that he is safe and recovering, or just keeping him company and watching one of his favourite films for the hundredth time with him when he wants it, you are there for him. Whatever he needs, you are there… and you being there means that sometimes I can be away with work, which really helps but I know it comes at the cost of you being James’ sole carer 24/7 through those times, with all of the added responsibility that brings, even though you never complain.
You love him unconditionally… Even when yet again you are clearing up what you would not expect to have to for a 16-year-old. Even when James refuses to cooperate, doing the exact opposite of what you have calmly asked him to do. Even when those rarest of rare things, a break from being carer to enjoy a treat, or a much-needed holiday, gets cancelled at the last minute because James cannot cope or is unwell. You love him because of who he is, not in spite of who he is.
You juggle like a circus performer… Caring for James, keeping the household going, managing to hold down your job, volunteering at church in the children’s team, being wife to me, mum to Phoebe as well as James, daughter and daughter-in-law, sister, friend and more… It’s amazing how you manage to keep everything going without dropping something, I’m very grateful for all that you do and very proud of you!
So, when things are tough, when it’s hard to see the future clearly, when that future looks difficult and there seems no end to the demands on you; when you worry about the future for James and what that will look like, please remember this… It’s not your fault, I’m fighting for our family alongside you, I care for you as much as you care for James, that I love you unconditionally too, and that when you are juggling and feel like you’re going to drop a ball, you can toss it to me and I’ll catch it. We’re in this together, for life and all that it can throw at us, and there is no-one I would rather be facing life with than you.
Your loving husband and friend,
Mark Arnold (Urban Saints’ Additional Needs Ministry Director and Co-founder of the Additional Needs Alliance)