When you are Chronically Ill – you bear the extra burden of the following:
Not being physically able to do Everything all the other Mothers can
Not being emotionally stable enough – due to pain – to handle very loud or hectic days sometimes – resulting in outbursts, short tempers or actions; we would love to take back.
Can’t volunteer in the classroom, on trips or for school events.
Sometimes are physically unable to attend performances, plays, competitions or parties.
Sometimes we have lived in a “Fibro Fog” or had surgery, or were bed ridden so very important milestones blurred by the pain
Intense Shame when facing other parents – because your illness is Invisible – others can’t see it and don’t understand why you can’t do those things as “You Don’t Look Sick?”
These things can wear us down. Most of the time we do a good job of burying it in the background and pretending it doesn’t affect us or our kids. The Family doesn’t talk about it openly because no one wants to increase the pain of the failure. Kids – just stop asking – if you will come; because they know you can’t. While they do a good job of pretending it doesn’t matter – it can manifest itself in different ways or behaviours.
This is normal, natural and most importantly – NOT YOUR FAULT OR THEIRS. So here are some coping mechanisms I have used to help my family.
I have become the Craft Queen. Michael’s and Costco rub their hands in delight when they see me coming. My husband sighs in despair – “What else could you possibly need from that place?” . Here are some cheesy, easy and cheap ideas.
paper bag puppets – brown paper bags, markers, scissors and some time
Necklaces – done in edible and non-edible designs.
Cheerios (Froot Loops) & Licorice – edible
Various beads (size depends on age), fishing line, stretchy elastic string and if you can believe it dental floss – yep and it is usually in your home.
Slime – cornstarch, water and food colouring is optional. Mix them in a bowl and when the spoon hits it, it is hard – when you hold it up it drips off in slimey drips!
Bendaroos – malleable wax strips that you can make into tons of different shapes. These are also reusable
Make a book – construction paper, stickers, glue, glitter, paper photos and whatever comes to mind. Write a story with your child(ren) and put it together, with text, pictures and bound with string or pipe cleaners. This will involve every age group.
Board games are old school – but you can do these in bed or at a table. There are so many options for ages out there – it rocks. To burn off some physical energy for them, while you are unable to go out there is Twister (you call the colours), Wii (you the judge of the games) or XBox
I also send my kids off to make a play or choreograph a dance. I do their make up and hair, they get their costumes on and then perform – it is fun for both. Tape this with your phone, digital/video camera and then watch together.
Although we don’t always want to encourage sedentary play – watching an old favourite like Mary Poppins, Labyrinth, Princess Bride or something like that – offers the chance for quiet snuggles.
Sitting together and reading a book – is a underated activity – it offers physical and mental interaction – which isn’t bad for either of you. Plus it offers a great chance for your children to ask questions and have a more intimate conversation.
My insomnia will leave me with my thoughts in the wee dark hours of the night. On many occasions I have anxiety attacks or repetitive thoughts about the following:
my babies are growing so fast
I have been sick for that whole time
I have missed so much – I haven’t been there for them enough – I have failed them because I have been sick – I can’t give them what they need.
my memory is so foggy – I can’t remember what their laugh sounded like – what were they doing when they were 3 years old?
I can’t get this back – what will I do.
So I found a really good solution. I have a journal for each child. Every month I put an entry in that includes these pieces of info:
What funny thing they did or said that month
How they were doing at school
What activities they did
What their grades were/what test was hard
How many PA days they had
If they had a Pizza Lunch or a Bake Sale
Anything else – including comments like “I can’t believe that you are my baby. I am so very proud of you for who you are.” Because quite frankly I am – and they should know that.
I have journaled their lives for 3 years and it has proved one of the smartest things I have done. Once they are grown – they will have a comprehensive record of their lives. More importantly I feel like I have tracked their lives properly. It does help my diminished memory and reduce my overall anxiety about missing out on my kids lives.
The fact is – my disability – actually forced me to be more engaged. I can’t go to an office to work everyday – I work from home. I have seen every first, am here after school and have collected endless hours of snuggle time. Honestly, it is probably the only fact that makes me feel lucky about being the way I am.
A lady told me once about parenthood “The days are long, but the years go by quickly”. Isn’t that true? Instead of beating ourselves up for being sick parents – we should use it as a parenting advantage – not to beat ourselves up over it.
I was evaluated by a group of Psychiatrists at a Pain Clinic, several years ago. They asked me: “Do you think you are a good mother”. My response; “Ask me when they are 20 – I won’t know until then.”
This was a wonderful post! Mommy guilt is not restricted to school age children. My daughter is thirty and I feel so guilty that I’m not able to spend the kind of time with her that I used to. I worry that I’ll become a burden just when she is starting to build her own life with her fiance.