My last post was dedicated to my brilliant baby boy. But I know he – we – wouldn’t be where we are today, still standing, still laughing, still together, without the help and support of many, many people.
My parents, and my parents-in-law, have been there at the end of the phone and at the drop of a hat, to care for children, cook meals, build compost heaps (well, a compost heap), do laundry, go shopping, iron shirts, calm tears and give advice (asked or unasked-for!). All with barely word of thanks and, more often than not, with ungrateful criticism. The rest of the family – Benjamin’s aunts, uncles, great-grannies, great aunts, great uncles, cousins of various descriptions, have all been there for us too, and we have never felt alone.
Our friends, near and far, continue to look out for us, call us, drag us out for a drink, care for us, laugh with us, cry with us. You know who you are and we hope you know how grateful we are.
We have been incredibly lucky to have been assigned a brilliant team of health professionals right from the very start. From our GP, health visitor and practice nurses, through the obstetrician, midwives and nursery nurses at the Edinburgh Royal Infirmary, to the community team of paediatrician, physio, OT, speech and language, plus wheelchair services, eye doctors, neurologists, counsellors, geneticists and more, we really have received exceptional support and it seems nothing is too much trouble for Benjamin. Add to this the increasing involvement of a team of dedicated and proactive visiting teachers, and I really can’t fault the care we have received so far.
As a stay-at-home mum in a new town with no experience of special needs of any kind, support groups, both on- and off-line, have been invaluable to me and to Benjamin for finding information, talking to those with similar experiences, and making new friends. I am particularly grateful to my local special needs parents’ group, and SWAN (Syndromes Without a Name), as well as the helplines at Kindred and Contact a Family.
The two people who have given, and given up, the most are of course my ever-patient husband and ever-cheery daughter. Every minute of every day I have reason to be grateful to them; I simply couldn’t do this without them.
In fact, with all this help, support and encouragement it’s easy to fall into that mothers’ trap of feeling guilty. In this case, guilty that I have it so easy, that I haven’t had to fight for recognition of Benjamin’s condition, or for treatment, care or benefits. We haven’t spent weeks on a hospital ward. We get some sleep most nights. We have food (and wine) in the fridge, and gas in the boiler. Living with a special needs child has not yet led us – as it has many – to depression or divorce.
A dear friend of mine learned recently that she has perhaps six months left before she loses her battle with cancer. Six months to show her partner how much she loves him. Six months to remember the good times with her friends and to say thank you to her family. Six paltry months to give her two-year-old daughter enough memories to last a lifetime.
So I’ll try not to waste any more precious moments feeling guilty, wallowing in the challenges life has thrown at us, or wondering at how fortunate I am. I cherish each person who, in any capacity, shares any step of this journey with us. Thank you.