Perfect aged 3
Perfect aged 6
Perfect, aged 9 with Type 1 & Coeliacs Disease
3 D Image. Claudia aged 7 just before she developed Type 1.
Is this just me or is this a common thought process?
Perfect aged 6
Perfect, aged 9 with Type 1 & Coeliacs Disease
Something I do on and off! I am not sure whether it's silly, sad, obsessive or all 3. What concerns me more:
Is it due to the fact I haven't accepted that Claudia has a few Long Term Conditions?
As a parent will I ever accept it, Claudia is still perfect in my eyes.
My other thoughts are: Did I miss something? I suppose in the photographs I am looking for clues of when it all started. They think Claudia probably had Coeliacs Disease from being a toddler, but that is something I will never know.
We had a Crystal block made with a 3D etching of Claudia in it. What is strange was it chipped a few weeks before she developed Type 1. Strange as that's how I see things, there is a tiny bit missing from something so beautiful. Was it an omen or is that me being ridiculous? These are some of the bizarre thoughts I have had! ooops!! One has to question my sanity at this point.
At first when I told Donald about how I felt, he had that look as if to say, I can't believe you have just said that. These days it's more, ahhh Angela is having one of her moments.
Men and woman deal with things in such different ways. So glad my husband says my quirky bits are some of his favourites.
Diabetes is invisible to most people, is that why no matter how much I look there is no difference before or after and I have to make peace with myself.
3 D Image. Claudia aged 7 just before she developed Type 1.
Is this just me or is this a common thought process?
my intention in writing this response is to offer some tools in coping with illness- not to judge or be insensitive in any way. just to offer hope and my experience. i say this because i too understand how sensitive these issues are.
ReplyDeletei stumbled upon this blog and it makes me wonder... what does my mom feel about me having polyglandular autoimmune disease caused by extreme gluten sensitivity that wasn't Dx'd for at least 15 years, probably a lot longer.
in dealing with my own morbidity due to a variety of Dx's, none of which are desirable, i have found the answer for myself that applies and maybe can help you. claudia is and always has been perfect. it's just that it sounds as if you are viewing her as inherently different. after all, she is just who she is. diabetes and everything else that makes her who she is.
although the dx's aren't anything i wanted, it is simply my path in this life, as diabetes is hers. mt mom has a hard time not staying in denial. she thinks life is easier there and doesn't realize it doesn't help anyone. not really even her. and i understand her not wanting her child to be ill. but knowledge is power and empowerment.
each day is truely a gift and having my specialness (Dx's) allows me to see what a gift that life truely is because i have lived in hell with my medical issues. i see clearly not to go down the drain and waste my gift of life and breath. it is a choice to stay in the light and embrace the silver lining and not let the darkness and loss of the way i think things "should" be take over. i too understand how bitter it can/has made me toward other peopoles' comments and you are right, the comments only make THEM feel better. but it is not their fault i am sensitive and i have to choose to acknowledge to myself they are trying to comfort me and their intention is good, not malicious and worthy of me spending time mad.
it is you that has to CHOOSE to find the silver lining of what has been laid on the lives of those you love and stay in the light. as hard as it is for you to accept, your daughter will learn from your modeling as to how to deal with this. don't look at it as the burden it is, but as the power to keep your love thriving in life other than withering away in a miserable experience. that is how i have spent the last 15 years, utterly miserable, until i finally got the correct underlying Dx- extreme gluten sensitivity. now i know and have the power to stop future disease and poor quality of life, and so does your daughter. it's all about choices and you have control and can teach her proper coping methods instead of the depressing aspects. such as, "i know it's hard to deal with all of this but you were made special and you are worth all of the work." simply accepting that this is our path and that it can't/won't be any different without our own choices is empowering because we hold the keys. it doesn't have to be a big negative.
now, it may be that this is just your sounding block and you never let on to your daughter how depressing it is for you. but kids always know when something's up, they sense it, feel it.
(i am long-winded so had to post twice)
ReplyDeletetake my comments with a grain of salt, each person is different and you may not be open to feedback. if i have said ANYTHING that offends you i apologize, i am coming from a place of love. i just know that i got a lot better with the acknowledgment of me holding the power to live the best i can. it was a total shift from depression to excited that i can heal some of the damage and prevent future damage.
lastly, make your new normal what you want it to be, you two design your future together. my advice, surround yourselves in as much joy as you can find.
none of us are guaranteed tomarrow- no matter your medical state. accidents happen. love every second and take joy in the small things, that will help fill your cup.
sending much empathy and hope your way.
it will get better, you just have to choose to make it that way.
and who knows, maybe you can give me insight into understanding moreso from a mom's point of view.
either way, best of luck to you both!
Hi,
ReplyDeleteThank you for taking the time to read my blog. I understand exactly what you are saying. These are indeed my private thoughts, I have always been very positive with Claudia,that is one of the reasons that Claudia manages so well. She is perfect and I know as does everyone else that knows her she will go far in life. If you visited our house you would never know that the girls had long term conditions, the house is always full of laughter and we openly discuss Diabetes & Coeliacs, Claudia always has an input on her treatment options. I think it is only natural for a parent to wish away a condition like diabetes and coeliacs no matter how well we manage. If you are ok, I would like to use your response for parents to see. As you make some very valid and important points.
warmest wishes, Angela.
hello angela,
ReplyDeletefeel free to share what you choose. it makes me smile that you include claudia in her treatment options. that is the very definition of empowerment. to do so at a young age, well that shows good parenting and empathy for her.
long and short of it i guess i was trying to say time spent wishing it was different is time wasted. time that could've been used bringing yourself up thinking about what is being avoided by claudia's life changes. it is a good thing you know. prevention is worth everything. reactive medicne can't fix all the damage once it is done. this is a gift that you found out early and can prevent a lot of future damage and worse discomfort for claudia. it's not a negative to know what's possible down the road. it's a gift. when and IF you began seeing the smallest signs, you can nip it in the bud and get help immediately. whereas if she wasn't diagnosed it may cause a lot more damage before it was all found out. if that makes sense. knowledge of the disease will help you be vigilent in detecting early signs for other complications, which would be difficult if claudia was un/misdiagnosed. that's all. i just wanted to offer the flip side to you, the silver lining. as it is where i find my most comfort and empowerment. again, i hope i didn't offend you or step on your toes at all. one of the the biggest gifts in life is that we get to make our own decisions, whether right or wrong, they are our choices to make, our lessons to learn. claudia is learning early in life the impact of choices, and this too is a gift. some people struggle all the way thru life never fully understanding the power they hold within themselves to make the choices that will lead to the life they really desire and that it is possible.
it was a risk for me to share my feelings, but i hope that i offered you some help in thriving in life, not just surviving with dreaded diagnoses.
life is nothing without our connections to others. i thank you for offering me a valuable view into a mother's perspective.
many thanks and much hope,
april
Hi,
ReplyDeleteI am a great believer in sharing feelings, emotions and views. You haven't upset me at all!! It is good to read your thoughts and opinions. It is because I have listened to people and thought about things, that the family manage so well together.
Thank you,
Angela xx