Not the best of days/weeks/months

It’s not been the best of times recently and today has just tipped me over the edge.

I struggle as I’ve talked about before with the responsibility of being a carer. I feel the weight of doing right by my daughter, by all my children so very much.

At the moment I’m trying to get her the help and support she needs to not only do well at GCSE but to be able to do A levels. Did you know there is no at home provision from the local authorities for A levels? It only goes up to GCSE. Disabled kids apparently don’t need to have a future or a right to university.

I have a few leads to follow on that and hopefully will get somewhere. But sometimes the fight just exhausts me. I am determined that her disabilities won’t stop her from achieving what she can but by god the world isn’t making it easy. Then there’s her upcoming surgery which makes me sick with worry.

Throw on top of that a few large unexpected bills (there’s the holiday savings gone) a parking mistake that led to a ticket and people being generally mean and I’m just done. I really do try to remain positive and count our blessings but right now I honestly just want to cry, curl up in bed for a week and be left alone.

I wish the universe would occasionally just give us a break.

Waiting for consultants- Cowden Syndrome sucks

Sorry for the long delay in blogging. I’m not feeling especially chatty at the moment, my daughter has some breast issues which I can’t discuss in detail but could range from the very serious to the not at all serious. She also had a bleed in her retina which again could range from serious to not serious. We are waiting for appointments with consultants to try and establish what is going on. I hate the waiting, I hate Cowden Syndrome, I hate that we get to a period where things seem calm and then she has a whole load of new things to worry about. I hate the fear. I hate that she and I are both looking forward to seeing the breast surgeon as we can at least then have the conversation about how old she needs to be to have a double mastectomy. I hate that at 15 she’s in a position where she’s looking forward to such a major surgery. I hate that once again we are heading into Christmas worried sick. This is the reality of Cowden Syndrome.

I’m still persevering with the challenge aside from a cheat day at the cinema that my son offered to pay the penalty for. It’s important to me keep fundraising, it’s important to me to think that one day there will be a cure or treatment and she can just live her life, one not without worry but with normal worries.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear

If you’d like to follow me on Facebook that would here:-

https://www.facebook.com/cure4Cowdens

Jealously

Sometimes times I get a little jealous, when I see kids reaching normal teen milestones or people achieving something I would like to. Back to school, prom, taking a great job or doing up the house. I don’t begrudge them in the slightest, heck in fact I’m pleased for them every single time. I just perhaps feel the walls around my choices around our lives a little more strongly that day.

When my children were young working part time worked well, it meant I could be the one who picked them up from school, I could attend every school event and my eldest needed a little more support due nuerodiversity and schools struggles with the nuerodiverse. I had always planned on moving into a more academic field once they were all at senior school level. I have plenty of qualifications ready to go. Charlotte of course just wants to be teen and do all the regular stuff that goes with it.

How does the saying go “Life is what happens while you are busy making other plans” J Lennon, and so it did. Anyone who reads this blog knows what happened next. My daughter developed cancer, followed by a diagnosis of Cowden Syndrome and later Chronic Fatigue Syndrome, Postural Orthstatic Syndrome, OCD and anxiety. She needs me, she needs me to there, to help her with homeschooling, to take her to appointments, to make her food, to look after her. Life took a detour and my daughter became disabled and I became her carer (as much as I dislike the word). Now I want to make it quite clear that I do not resent that in the slightest, I would not want anyone else to do this for her. What I would wish is that we both could have a normal life, that she could be at school and out at the weekend, worrying about crushes and ridiculous fashion, that I could be out at work and furthering myself in some way. That our lives had not detoured. But they have and I think it’s ok to occassionally mourn that, to acknowledge that I wish things were different. To say “honestly I wish my daughter had the opportunities yours does, I wish I had the opportunities you have” I wish we didn’t have a wall around our choices.

I know I’m not alone in this, carers of all ages all over the world face the same thing, it’s a tough thing to talk about though as I am sure none of us want to make our loved one feel that we don’t want to be there for them. Of course we do, what I mourn and again I’m sure it’s the same for most people in my situation is the life we both should have had. I know at times she feels left behind behind by her friends and I feel left behind by life. I feel like my family runs just to stand still as the chance to move forwards just isn’t there, we still fight to every day.

I also know there are those who look down on me for being a “yoga teacher” while their careers have soared, It;s been made clear in both subtle and not so subtle ways. I guess that one is on them for having a narrow perspective of success. It never ceases to sting though when someone puffs up in front of me, boasts of this that and the other then asks with a hint of derision if “I’m still doing my yoga thing” in a way that makes me feel small in comparison.

In reality this year has been a success just in a different measure, Charlotte and I started the year with us both desperately nervous about full time home schooling and by the end of June she had sat 3 GCSE,s at 14, quite successfully I’m sure (we don’t know yet and are rather excited). She is happy and by god that means more to me than anything else in this world and we have time together, a luxury not many families do.

I have freedoms a full time working person doesn’t have, I can run in the middle of a day or go to the gym in the middle of the day while Charlotte is resting. I enjoy the job I have as a yoga teacher, actually I LOVE it especially where I teach at the moment.

Please forgive me though if every once in a while I have a pang of jealously when your teen is off to prom or you get a promotion or buy a new house. I’m happy for you, I genuinely am I just occasionally feel the walls around Charlotte and I.

If you find anything of interest or use in my blog please consider sponsoring me and help work towards a cure for Cowden Syndrome. Thank you.

https://www.justgiving.com/fundraising/sugarfreeyear