Chronic Illness and Parenting – am I a shit mum because of my shit disease?

I’ve been thinking a lot about how my illness has affected my children and the relationship between us. I have three kids and every day they amaze me with their intelligence, kindness, character and awesomeness.

Till 2010 my husband’s job took him away from home for up to nine months of the year. So my kids (born 2000, 2003 and 2005) and I were this super close gang. The four of us were together all the time and though, of course Timm was a huge part of all our lives, it often felt like I was a single parent.

Even when my Ulcerative Colitis was bad, we would still be this team as we had no other choice! We had help from my mum, sister and friends but we got through it together. The kids didn’t really understand, which I’m glad of. They just knew that sometimes I was poorly and we would have film nights where we all slept in one bed and hung out. It meant I could rest and know they were are safe with me.

Timm stopped working away in 2010 and it changed our family massively and for the better. The kids loved him being at home and we started our photography business together. It made all our lives better.

When I was at my sickest in August 2013, I thanked my lucky stars that his job meant he was home to care for the children and give them the support they needed. I had a few weeks in hospital and then came home without a colon but with an added ileostomy bag. They had been so worried whilst I was in hospital and their concerns upset me. I hated that my illness was making them so sad.

Then when I got home, my bag and scars, the staples holding my body together, my tiredness and weakness scared them. They became afraid to hug me. Fearful they would hurt me. And to this day, though totally understandable, it is the toughest thing I’ve gone through. My babies being too afraid to hug me.

Fastforward eighteen months and they’ve learnt so much. My second surgery took away my bag and replaced it with my Jpouch. Though they knew more, and were less freaked out this time, they suddenly had to learn to live with a mum, who once again would run out of the room to dash to the toilet. Who couldn’t eat certain foods, who takes medication that cause drowsiness.

This journey I have been on has been tough on me, but my kids have been through it too. They’ve had to see their mum disappear onto hospital wards for weeks at a time. They all freak out when I have even a scheduled clinic visit now, terrified I won’t come home for weeks. They have had to learn so much and I truly believe that though it’s tough, and I wish they didn’t have to go through it, that they’ve come away as more empathetic, kinder, more open humans.

The problem with chronic illness is that it isn’t about a few weeks and then life going back to ‘normal’, the illness IS life and it’s learning to reassess how you live this odd life that you never planned for.

Currently I have awful fatigue, sleep problems, anxiety, pain, toilet and diet issues. I take high dose codiene every day that make me drowsy. I struggle to wake before 9am. I know I am tetchy, self absorbed, distant and sometimes just absent.

The kids have had to lean on Timm both emotionally and physically. This isn’t a bad thing, he’s their dad!! But for me, it’s a struggle to see him take over all my roles. This is such a selfish thing to say. The kids are fine and so is Timm, so much so that I occasionally doubt whether I’m necessary at all!!

This is selfish and all a bit me, me, me, but I’m just going to blurt it out anyway…

It hurts that they go to their dad instead of me. It hurts that they want him to do bedtimes, it hurts to know they ask him for advice instead of me. It hurts to feel left out. It hurts to feel my illness is a barrier between us.

I’m scared they’ll think I don’t care. I’m scared they think I’m lazy. I’m scared that when my head is so full of my own pain, anxiety and distress that they will think I wouldn’t drop it all in a second for their needs. I’m scared they won’t need me anymore.

See, told you it was selfish!!!

Because when I put my brain into gear and tell my heart to shut up, I am so proud of my family! I’m so happy to see Timm having this amazing bond with the kids that he missed out on when they were small. I’m proud to see them growing into confident, self assured, wonderful young people.

When I see that Timm has learnt to plait hair because I can’t function in the mornings and Ellie needs help, my heart swells. When Thom tells his teacher that it’s daddy who helps him with all his homework, I thank the day he stopped touring. When Charlie has an awe inspiring role model of a dad in his life, I am thankful and blessed.

Don’t get me wrong, they aren’t angels, and my illness makes me blame myself whenever one of them does something wrong. I can’t help but think that if only I was more present and full in their lives at the moment, that they wouldn’t have made that mistake.

When I tell them off and perhaps shout a little louder than necessary because I’m in pain. Or I’m too short with them because I’m desperate to go to the loo. Or when I’m distant and perhaps seem cold because I haven’t slept a full night for two years and I’m so exhausted I could drop. All those things swirl through my head for days, just worrying me that their childhoods are being scarred by my illness.

I just hope that they understand that my illness has played a big part of all our lives, but that I have always loved them, that they are always the first thing I think of in the morning and the last thing before I sleep, that they are the best things I ever did and always will be.

I hope one day I can explain to them that I wish it could be different, that being ill is tough but feeling like I fail them is tougher.  I hope they will know how much they mean to me.

And that I’m sorry that there were times that my illness may have hidden these truths from them.

Sam xx