The support that I have felt during this time really is amazing. This has been a long drawn out predicament- but really, it is the new normal. It is forever. Hopefully, it will be just a page of my story, maybe a chapter at best, but this is the reality that I need to come to terms with. Having said that, I would like to recognize the persons that have been at my side since that first phone call on Christmas Day. This is especially hard on those that love you. I have said it before, I think I’m lucky, I don’t have to watch.
I was inspired to write my blog while reading tumourhasit.co.uk And once again, the author and now her Mum, have inspired me. HLH doesn’t just affect me, it affects my entire family and circle of close friends. My Mom has had to watch me howl on the floor in pain. My Dad has had to help me down the stairs because I was too weak to do it myself. My children have watched me cry and asked, “what makes you so sad Mommy?” And my husband has seen all of this as well as put my shoes and socks on when I couldn’t, made endless amounts of meals, driven to many doctor’s and ER visits and made us all laugh just at the right time; among countless other things.
They do this all without the public face that I have made it. The sacrifice of a parent, spouse or child, goes without the fanfare it deserves. My parents are sacrificing their retirement home in AZ to be with us here (and they are SO needed). My husband has missed work. My children have missed many events at school and the focus of life is not really on them- it’s on me. There is no ribbon color for the caregivers. But they are no less part of the healing process. I will never know the extent to which it has affected them all.
So how can you help? So many of you seem to want to help. “I wish I could do more…” is often uttered as the last phrase of a message or letter. Let’s cut to the chase- how to help. This isn’t met to make anyone feel bad, it just needs to be out there. (I had help from tumourhasit.co.uk– pop on over).
- “Easy, peasy lemon squeezey” as my daughter would say… give blood, get on the bone marrow registry.
- Don’t ask what you can do to help, just do it. Bring food, offer rides, clean something in the house, babysit. Yes, many of these things are done for us. Thank you. But it is hard to ask sometimes, because remember this is lifelong. I will probably always need some sort of help.
- Message those forgotten persons. Message me. Message often. But don’t always expect a reply. It doesn’t mean we don’t love you, just means that life is getting the better of us for a moment. We will remember those texts and messages that came just at the right time.
- Understand that we have all changed. Some days it is extremely hard, and I am not the carefree person that I once was. I try to understand that life keeps moving and right now I feel like I am standing still. I remember crying my eyes out when it seemed like everyone went on vacation at once. I couldn’t go on vacation from this. I can hardly plan what’s going on in a week. This is doubly true for the forgotten persons.
- Don’t get mad if I cancel and on the rare occasion I just don’t show up. I’m not that type of person, you know that. Talk to me, don’t sit passive aggressive and wait for me to talk to you.
- Keep on inviting us. Just because life is hard doesn’t mean we don’t want to take part in it.
- Don’t say “I couldn’t do it.” To the caregiver or to me. You are darn rootin’ tootin’ you would.
- Don’t ask “how’s it going?” if you don’t want to know. Because sometimes it is absolutely lousy.
- Ask us questions about what is going on, especially if you don’t understand. This medical condition is brain boggling to us too, but we will answer questions.
- Be prepared that September is Childhood cancer awareness month, blood cancer awareness month and histiocytosis awareness month. For the foreseeable future, I will be lighting up facebook with knowledge and awareness and at some point funding raising. Don’t just scroll by. It’s only rare until you or some you love has it.
- This one is hard- please don’t tell me or the caregivers to “hang in there,” “praying for ya’,” “stay strong” or my very favorite, “you’re so inspiring.” Unless you support your words with action. Pray with us, support us, inspire us. Because trust me, I don’t want to inspire anyone. I want to be normal. But thanks anyways.
- Don’t give me excuses for not doing the said above. I know that life keeps on moving and this is where I am. There is no sense wasting your breath with excuses. You were busy, ok that’s fine but you’re here now. Let’s get back to being friends.
I truthfully hope that I am on the road to a full recovery, but this may always be in the back of my mind. I often picture myself putting flowers in my daughter’s hair at her wedding. Maybe, at that point, I will “chill out.” I will feel that I have made it. Maybe not. Right now, I know that I am happy with the progress that I have made. I am as happy about the whole thing as I can be and I do believe that I am becoming a better person. Continue to pray with us. Continue to hope with us. Don’t forget us.