The last week have been full of many unexpected changes. It has now been a whole month without Hope attacking me. This week I realized it has also been a whole month of me not being Hope’s mother. That is not acceptable to me. We have two different agencies involved with out family to help Hope. We saw nobody from either of them this week and Hope’s behavior hasn’t been any better or any worse. She has still raged, she has been nasty, and she has been physical with GB. Monday the newest worker, Mary Poppins is coming to meet. I have scheduled 15 minutes for this meeting. I plan on telling her I see no benefits for our family in her visits and we will not be using her agency’s services any more.
I now have over 12 extra hours a week available, since Kenny chose to let go of this world and move on to the next. I have done a bit of crying, but overall I feel proud of him…the courage it took to deliberately say “I am ready to go”. I want to have that kind of courage when it is my time. I kept a regularly scheduled appointment with my cardiologist and heard that I have been upgraded from “cardiac insufficiency” to “heart failure”. I go to St. Peter’s this week for tests that, among other things, will measure the ejection rate of my heart. It explains my ongoing fatigue and how difficult it has been to get anything accomplished.
Divide and conquer techniques have made life easier for GB. The school, in its infinite wisdom, decided GB could skip recess in order to mainstream. I am not sure of their reasoning, since I spent Wednesday and Thursday with Kenny and only had time to remind them, via email, that they could not mainstream her without my permission and they did not have it. I meet with the school this week to figure out the next step.
GB is still heavier than is healthy because of the loxapine. I printed of two healthy eating charts, one for me and one for GB. I will take them to Stapl*s to get them laminated. I hope, by making us more aware of what we are putting in our bodies, we can improve our eating patterns. If we are both doing it, it might be easier on GB.
Kenny’s funeral is Tuesday. For many reasons I have avoided church in the last year+. I will be there Tuesday.
Adopting Special Needs 
I started a program of arts education for people with special needs. We specialize in dance, art, music, and musical theater. Does anyone know of any programs like mine anywhere in the country? Please let me know.
jenkinsdebra@me.com
http://www.merrimackhall.com/johnnystallings.html
http://merrimackhall.blogspot.com
Hello,
I know you do your best as GB’s mom. But something worries me when you say “GB is still heavier than is healthy”.
I actually am the opposite : I am thinner than healthy is.
My main point is that if you make GB and yourself eat healthily for the sake of weight loss, it won’t work.
It won’t work because no matter how healthily GB can eat, no matter the amount of exercise she can do, the scale may not move. And when the scale does not move after one week, two weeks, five weeks, ten weeks, you give up and GB gives up.
I assure you that you won’t be the first and you won’t be the last to make the same mistake.
Of course, and don’t get me wrong, a healthy lifestyle is very important. But it is important for everyone, not only when we can suspect/fear/be certain about obesity.
A unhealthy lifestyle is harmful for everyone, even the skinny folk.
But you don’t have a healthy lifestyle for the sake of weight loss. You have a healthy lifestyle for your own sake, for having energy, for being happy…
But not for the sake of weight loss.
You and GB can eat as healthily as you can, it does not mean that BMI (or BMI-centile) will come back into a normal range. Maybe, but also maybe not.
I can tell you that BMI is BS.
Also, 10 years ago, you had an average weight until a BMI at 30, now the cutoff for average (healthy) weight for height is 25.
Studies demonstrated that for adults, a BMI between 25 and 30 lowers the risks of mortality (I can research them on PubMed if you want).
Someone who is very muscular can have a BMI at 27. Does it mean that he is unhealthy ? Heck, no. The problem is excess of fat mass, not muscle mass.
And to tell you the cherry on the sundae, even when BMI is at 21, 22, (so, perfectly normal BMI), some doctors start to lecture you about the dangers of obesity. You are not even obese BTW.
I also took my charts from when I was a child. I was on the 3rd percentile. Well, now, I would had been considered in the 1st percentile for age, height, and weight. So, doctors would had panicked about a so-called anorexia nervosa (it had never been suspected, I was always eating well unless pressured by stress), a disease that I must have since thin children have to be unhealthy yada yada.
To tell you the whole truth, my BMI is classified as “underweight”. ADHD medication or not ADHD medication, I am stuck on the same underweight BMI.
Some doctors have mistakenly labeled me as suffering from anorexia nervosa, and sometimes even when tests prove otherwise (ie clearing me from eating disorder).
All my blood analysis are normal. Hemoglobin ? Passed with flying colors. Ferritin ? Ditto. Vit. D ? Ditto. Transaminases ? Passed with flying colors either.
Do I smoke ? No way.
My GP knows that berating me about being underweight does not help. I brought the topic on focusing to weight does not help, better focus on healthy changes.
So, for your own sake and for GB’s sake. focus on healthy living changes, one day at time, one tiny change at time.
If GB’s ped berates you about GB’s weight, and does not listen to you when you ask him to focus on healthy living and not weight loss, quit that ped and find another one who will not only look at weight, but overall health.
Weight is not everything. And if the ped insists at looking at GB’s weight only, you can also ask for an impedancemetry test, it will differentiate between organs, water, muscle and fat.
Because medicines like loxapine can and does trigger water retention, BTDT. In such a case, healthy living is far from being a cure-all.
Hormonal changes can change someone’s weight, and hormonal imbalance can be triggered by medicines (like antipsychotics, since APs can raise prolactin levels).
Healthy living yes. Living for the sake of weight loss is not helpful for anyone and jeopardizes health as much as unhealthy habits.
So, if I were you, I would aim the laminated charts to eat healthily for being healthy.
Not for the sake of weight loss.
I agree. Eating healthy and feeling good are the goals.
I would like to applaud the incredible progress in your family’s safety: “It has now been a whole month without Hope attacking me.” I hope it will continue, and I hope that GB will also be safe from Hope’s physical attacks. Such progress.
In the midst of grieving the death of your friend Kenny, I hope you will allow yourself to savor that step forward in safety and security for your family.
But I’m so very sorry to hear about your serious heart disorder—such a troubling and sad situation to be in heart failure at your young age. My thoughts are with you, and I hope that your doctors will have some treatment that will bring you some relief from the fatigue.
You have been through so much. Let me know if there is anything I can do, from a distance, to lighten your load.
The fact that you now feel that not being a mom to Hope is unacceptable means taking a break from her probably helped. Even with the death of your friend and your heart problems it sounds like you have some wind in your sails again.
I agree with Toasted Tofu. I will be praying for not only your heart issues, but for your comfort in the days ahead as you say goodbye for now to Kenny. (((Hug)))
I had no idea you had such a serious heart problem. So sorry and I will be praying for you.
I am glad you have not been getting physically hurt from Hope and I’m sorry to hear about your friend. From what you’ve wrote lately, I know he must have been very special to you. I wish I could give you a real hug, but for now the Internet will have to do.
Love you bunches (((hugs)))