I want to write about something else. I want to write about, think about, something other than my son having FSGS. But I can’t.
It’s like a sort of grieving process. The first two weeks after he was diagnosed, Matthew and I were a mess. There was not simply the shock of being given such an unexpected diagnosis and the uncertainty of his prognosis but the grief, which was immediate, over the kind of life which he would probably no longer have. Because when your children are healthy you take so much for granted. I just want him/her to be healthy, we say when asked if we mind what sex the baby is. Health and happiness, we toast, or pray for. So long as they’re happy, we think when our children are facing the gamut of things that life throws at them. So yes, it’s like a sort of grief. We worry that he may not be able to have a ‘career’ in the traditional sense if his childhood is filled with missed schooling, illness and dialysis, or he has to spend long hours at the hospital every other day as an adult. The drugs he may have to take may cause infertility and the path to a traditional family for him may be difficult. His life is likely to be different in so many ways from the one we envisioned, hoped for: schooling, career, marriage, children, health, happiness. I’m not saying he won’t have these things, because he may be one of the lucky ones and achieve some sort of remission, for a while at least. Or he may excel academically, practically, artistically or in any number of ways despite this disease, despite a regimen of dialysis if that’s what he ends up on. He may find the most wonderful person to share his life with (and this I hope for fervently because I truly believe there will be someone wonderful out there for each of my sons). He may never be healthy in the traditional sense but he may learn to make the most of his life even if he has to have repeat transplants, frequent hospitalisation or live with dialysis because the good times will be so precious when he has experienced the bad. We are lucky that he has dialysis as an option to keep him alive; other parents face much poorer outcomes for their very sick children. And he is a wonderful, easy-going, happy boy and happiness may always come easily to him. But none of these things are as certain as they were. I know they never were certain because we can never know how our children will turn out or what paths they will take, but these things were a lot more likely before all this. Because he is a child people say he will never know anything else and he will learn to cope: ‘children are so resilient,’ they say. And they are. But he will see his brothers do things that he may not want or be able to do and I hope that he is able to deal with that. I’m pretty sure he will, because already he doesn’t want to join his brothers and friends outside playing football, yet he is inside doing arty-crafty projects, happily it seems. He will cope in that respect I hope. But his childhood is already full of hospitals, sickness, medications, tiredness and missed schooling. Most people are resilient, not just children, and we all try to cope with what life deals us, it’s just that I don’t want him to have to be resilient. I just want him to be a child, to have the carefree childhood we had come to take for granted. To have the same opportunities in the future for a normal life. To be healthy. And that is hard to come to terms with as a parent, to know that I cannot fix that for him.
The grieving and anger makes perfect sense. I think you have togo through these before you can accept the diagnosis. And then the coping. But it is going to take time.
Stay strong.
I am so sorry that you’re having to go through this. My dad has Wegener’s Granulomatosis and lost his kidneys in 2001. He’s been on dialysis for eight years now, and is doing pretty well on it. A few years ago, he and my mom went through training to be able to do dialysis at home, six days a week. Each evening, they hook my dad up to the dialysis machine and watch a movie while he gets his blood cleaned. Until they started this program, he was on the standard, three-day-a-week dialysis at a clinic. The difference in how he feels is dramatic. He is MUCH healthier on the six day a week dialysis. If your son does end up needing dialysis, you might want to see if there’s a hospital near you that sponsors a six day a week program (my parents had to switch doctors and hospitals in order to find one that would do this for them, but it’s been very much worth it.)
Best of luck to you. *hugs*
That you are this aware of the things he may miss out on and clearly committed to giving him as happy and normal life as possible makes me think that he will be o.k. It is your love and example that will help shape how he sees himself and his world.
I have some catching up to do here, but I just wanted to say that my prayers are with you and your family right now. It is never fair for a child to be sick and we really do take our kids’ health for granted, or at least when that’s the norm for them we do. He sounds like a great little boy and I bet he will excel in so many ways. Please take care.
I’ve only just discovered your blog. Sorry for being so late! I’ve just read some back posts and your story has truly touched me. You poor, poor things. Well done for being so brave. Despite everything, he is a very lucky boy to have such loving parents. And I’m sure he knows that. Keep being brave x
Writing about this will get you through it. Can I send you some pencils?
I really feel and understand what you are going through. My daughter is nearly four and was diagnosed with nephrotic syndrome last August. It was a shock and we too had to try and come to terms with her not being the perfect healthy child we wanted. It takes time and I’m not sure even now we have come to terms with it. She has been on prednisolone since then and recently started intravenous treatment once a month. The side effects from steroids are terrible but the thought of your child being ill (or worse), possibly seriously and the chance that they could need treatment all their childhood is terrifying and sometimes incomprehensible. Your experience and son’s condition seems worse than our daughter’s at present and I can only pray he gets better and there is more and more that can be done medically as time goes by. I know we feel we haven’t got time but we have to be optimistic and take it one day at a time. We are. It’s hard, we will do everything and anything we can for our daughter to make sure she gets the best treatment. All we can do is our best, we are helpless when these conditions strike, but we must carry on for their sake.
Diana – I am sorry that your daughter has nephrotic syndrome and that she has been on steroids all this time. In many ways it is just as bad as FSGS if they are steroid dependent. Will she try another drug? Please feel free to email me if you want to stay in touch.
Hi Ella, yes she is steroid dependent, but she is half way through intravenous treatment (Cyclophosphamide). You may know about it, it’s a full day of being on a drip to suppress the immune system and stop her relapsing. I can only pray that it works and she doesn’t develop further problems but that is always on our minds and is possible. Poor William is really going through the mill. It must be so hard coping with his condition and three brothers. I really do feel for what you are going through. No parent or child should ever have to go through this. I often wonder what have we done to deserve this when we are good honest people. It’s just to heartbreaking.