Thank you for reading my last blog, it really does mean a lot to me.
This one may resonate with many parents reading who have a chronic illness or those who's partner has a chronic illness.
It is quite a personal entry and I have been thinking about this a lot recently. I know I am not alone on this subject speaking with others who have similar thoughts, fears and feelings of guilt. Please bear with me as this is a little longer than previous entries as it is not a subject that can be cut into bite sized pieces. This is real heart on the sleeve of feelings I feel should be shared to show the invisible is clearly very visible, if you just look.
I have dreamt of becoming a parent since childhood, role playing with dolls and watching my mother lovingly shape me into the woman I have become, for that I will be eternally grateful.
My dream first came true in May of 2000 when we welcomed our first born son into the world after being told that due to my endometriosis I may never be able to conceive. As I took in this little miracle and precious gift I planned our future as a family. I vowed to protect, love unconditionally and teach our son how to be a loving human being and to share our lives and have so much fun and make memories to last forever.
We watched him learn, grow, complete milestones and bring us endless joy, worry and frustration. This little boy was perfect in every way and he was my reason for getting through each challenging day. Four years passed and we decided to extend our family if that was our destiny. 6 months later we fell pregnant with our youngest and final son, son number 2.
We welcomed him into the world in June of 2005 again we held our second miracle and all those previous hopes and dreams came flooding back with endless, unconditional love. I also promised him the same I had his big brother five years ago.
The next 3-4 years became a real challenge as this little man decided he wouldn't sleep much and was like a delightful whirlwind full of enthusiasm, mischief and pure curiosity as all children should be.
I began to notice I was becoming less able to keep up with my boys and declining play time more, especially as the day went on.
I put it down to being a mother of two energetic boys and all that comes with them.
I had started having agonising migraines that could last for days and in some cases hospitalise me. Many of these were brought on by lack of sleep and on top of that working night shifts. I began to feel guilty that I was having to remove myself from family life more often and was struggling to keep up with work, house work, being a mother and a wife. I still craved for a social life as I have always enjoyed letting my hair down and enjoying music and dancing with the odd drink or two. This is slowly dwindling as I can barely get up in a morning let alone go anywhere after work or past late afternoon. I do try and make myself but, a lot of my plans are cancelled now or are not even made as I know physically I cannot withhold them.
I watched on as fellow parents ran, played, laughed whilst bursting with energy. I remember feeling like I was letting my boys down already. Not knowing why I couldn't find the energy to do all that I should be. I felt that they could see others and feel like they had been cheated somehow. I am pretty sure they won't hold it against me but you never know what is going on in somebody else's thoughts.
I begun to feel different within myself, tiring quickly, feeling like I had flu or a constant virus. After many trips to the doctors, changing my career and countless blood tests I was finally diagnosed with autoimmune disease and connective tissue disorder two weeks before Christmas 2015.
This conjured up a barrage of feelings and emotions as noted in my previous blogs.
The hardest to come to terms with is that I cannot be the mother I promised I would be to our new born sons. This hurts the most and I still cannot except this fully. I find myself less patient due to chronic fatigue and pain. I have cried after they leave for school at how grumpy I have become. I have cried at the love and gentleness they show me when they see I am feeling in pain or just exhausted. Our youngest son just hugs me and says 'Are you not feeling well again, a hug will help'. They are so caring and concerned. Our youngest has a huge heart and is a confident little comedian and makes me laugh every single day. He is going to get along in life just fine and make me prouder each day, that is a given.
It should be me being there for them!
I wanted to take them on adventures, show them the world, camp in the forest, go to festivals and watch their faces as they drank in their surroundings. I wanted to have movie marathons eating our weight in pizza and chocolate but one film is exhausting and eating is hit and miss some days. I cannot camp as the cold hurts, the floor is definitely a no ( 2 years ago we camped in the back garden for one night, it took me a week to recover! ) I cannot stand all day or walk around all day at a festival. Yes there are ways to get around some of these hurdles, believe me I am looking into them.
Our eldest son is on his exam journey in his last year at school. I should be helping him study, encouraging him to be confident and cheering at the side lines. Some days talking is difficult let alone cheering!
He is growing into a handsome, kind, loving young man and I hope he knows I am still here inside this crumbling shell. He makes me so proud and honoured to be his mum.
They have to take on more responsibility around the home which I know they are not keen on but they do it to help me and their dad out as we both work Monday to Friday. This is on top of their homework but I will never let them miss out with friends, this to me is much more important. Their happiness will always come first!
Another fear is that they will forget their happy, smiling fun mum and just see the tired, quiet mum I am becoming. I want to be their confidant, their ears, shoulder and comfort, not the other way around.
They make my heart burst with pride every day for the beautiful souls they are and their desire to see life and what it offers. I want them to travel, experience, feel, be amazed every day. I want them to fall in love, build a life, a home, a family. Hopefully I will be there with them, hopefully I will not cause them distress or fear of what may be.
Nobody can say their future is certain, secure or mapped out. The road can lead us anywhere and often has many bumps, pot holes and wrong turns. I hope I have taught them love, kindness and understanding that they will draw upon into adulthood and be the men I know they can. I hope that whatever happens with me that they will not let it burden them or hold them back. I still have a few miles in me yet and plan to make damn sure it's spent with my precious family and new experiences are to be had!
I have some amazing friends old and new and each and every one is so precious to me and I hope they know this.
I am in the process of creating a bucket list, that's for another blog!
Friends and family watch out you are going to be busy having fun. And Gary Barlow, I will meet you one day, I will!
I am still a long way from knowing what my future holds but one thing I know will never end is my love for my two miracles. Boy's I hope you will know this forever and will always experience new things for us to talk about, laugh about and cry about. My boy's you are my world and that is something I will fight for always.
Keep on fighting fellow warriors!
All my love
Mum (Carrie) xxx
