30 days drawing challenge: Day 9

The 30 days of drawing challenge day nine is to draw my favorite television show. Since I can't really think of what my favorite show is I thought I would have some fun drawing Gotham.

I think there is only one season of the show so far, but I enjoy it. Jada Pinkett Smith is easy on the eyes!

 

 

Gratitude Week 8: Grateful for Someone Who Inspires Me

Someone who inspires me – I am grateful to have many people in my life whom I find inspirational.

I looked up the definition of the word inspiration: The excitement of the mind or emotions to a high level of feeling or activity.

Now that I have read it I would say I am more excited to a high level of feeling than inspired to a high level of activity. I am excited to a high level of feeling by the following people: Shel, my kids, my mother, my sister Jackie, My sister Jill, my aunty Brenda, My nana, my Gran Ennis, my friends Mel, Loralee, Tari, Mary, Laurel, Kathleen and Sarah. My sister in laws. I believe if more people read the definition of the word “inspiration” then they would realize that being excited to a high level of emotion doesn’t have to come from someone famous. In my case none of the people who inspire me are famous (that I know of).

In less than a week my nana will have been gone from this life for eight years. I can’t believe it. I STILL think of her every day. I know that seems impossible – that I would think of her every day after eight years, but I do. She had that kind of impact on me. She was a feisty lady. Small in stature, but HUGE in personality. She was born in Liverpool and was growing up in the city during the second world war when it was bombed. She was actually in a bomb shelter when a bomb landed on the buildings above and some people were killed in the shelter where she was.

In her lifetime she experienced the most amazing things; overwhelming, harsh, TOUGH things.  Her mother passed away and was buried at sea on the way to Africa. Her sister had tuberculosis and spent time in a sanitorium. Her one son was killed in the civil war in Africa before he was in his mid twenties.

Whenever I think I am having a rough day I think of nana and all that she endured and overcame and what a wonderful woman she was.

I have been blessed in my life to know that I am loved. I KNOW that my nana loved me. A few years ago my parents were living in Singapore and I went there to visit with them. Nan was visiting them at the same time. I had not seen her in quite a few years, and we had the most excellent visit. We laughed and we talked and we spent a good deal of time together not saying anything at all. I was always extremely comfortable in her presence. It’s difficult to put into words the way being with her made me feel.  I can only say this – I never ever doubted that she loved me completely and never judged me.  She was one of the most remarkable women I have ever known and I am MORE than grateful that she was in my life.

Thursday Thirteen: Mycobacterium Avium Complex

You may wonder why I am writing about this – so here is an explanation. My beautiful, spunky, 3 year old niece has been diagnosed with MAC. I last saw her in November of 2013 when we were in California . One afternoon we took some time away from the events of the funeral which brought us together and we went to the beach. It was her first experience seeing the Ocean. She was SOOOOO excited. I held her hand as we walked down the stairs. With every step she squealed “let’s go!” We had a great day at the beach and she LOVED the water. She loves being outside and playing and so her getting sick has caused a huge shift in her world and in the world of my sister and brother in law. I went online to find out what I could about her diagnosis and today I am sharing what I have learned. (My sister has written on her blog all about the experience they are going through so if you are interested in hearing about all this in her words you can link to her blog HERE)

1.       MAC (Mycobacterium Avium Complex), is an atypical mycobacterial infection which can occur in the later stages of AIDS.

2.       MAC is related to the tuberculosis germ, but is not contagious. This would explain why my niece had a positive tuberculosis test.  I never quite understood why she had a positive tb test, but now I do!

3.       MAC organisms can be found virtually anywhere in the environment. They live in water, soil, foods, and a variety of animals. As a result, it is difficult to avoid coming into contact with MAC.

4.       MAC USUALLY this affects people with the later stages of AIDS or people who are old and have weakened immune systems. Try looking for information on MAC for children. It is insanely uncommon and finding out information on children with MAC is extremely difficult.

5.       Here is some of the information I found online about MAC – which will illustrate how frustrating this process has been for my sister and brother in law : MAC pulmonary (lung) disease’ major susceptibility risk factors depend on which of the two types of disease are present. For nodular disease the risk factors are being Caucasian, female, average age between 60 and 70, and having bronchiectasis. The most important relationship in women is that of bronchiectasis. For patients with MAC upper lobe cavitary disease, the major risk factors are being male, average ages between 50-60, heavy smoking, and often-excessive alcohol consumption.

Obviously my niece is neither a female between 60 and 70, nor a male between 50 and 60. She is not a heavy smoker, and her alcohol consumption isn’t excessive. DUH. She doesn’t consume alcohol!

6.       Fever is the main symptom of MAC, along with night sweats, chills, weight loss, muscle wasting, abdominal pain, fatigue (often caused by anemia), and diarrhea.  These symptoms in a little girl obviously are debilitating. She obviously does not have much weight she can afford to lose, but she is in a lot of pain.

7.       MAC can also cause enlargement of the liver and spleen, as well as the lymph nodes. This is how it was diagnosed in my niece – who had one of her lymph nodes so completely destroyed by the bacteria that the surgeon didn’t even think it WAS a lymph node when he removed it from her body.

8. As the bacteria spread through the body and affect different organs there are obviously different symptoms. It usually doesn’t spread from one organ to another, but in my niece’s case it is spreading or was beginning to spread. My sister has to watch for things like vomiting, diarrhea (which she got) and a cough – which would mean it has spread to her lungs.

9.       It  is possible to prevent MAC from causing disease and symptoms in HIV-positive people using drugs (prophylaxis), a type of prevention that is almost always recommended for HIV-positive people with compromised immune systems (less than 50 CD4 cells). Again and unfortunately, my niece is not in this category of patients. It makes her treatment insanely difficult.

10.   If an HIV-positive person is diagnosed with MAC, he or she may be required to continue therapy for life. This is necessary to prevent MAC from returning. At this point we don’t have any idea how long the treatment will be required for my niece. She has started the treatment and she is reacting well after the first week.

11.   MAC must be treated with a combination of antibiotic drugs to maintain control over the infection.

12.   Side effects of the medication taken to kill the bacteria can include nausea, headaches, vomiting, and diarrhea. Blindness may also occur as a side effect to the medication. The side effects to the bacteria are almost as scary as the effects of the bacteria itself. Obviously we don’t want our little angel to go blind  - but nor do we want the bacteria to shut down all of her organs.

13. Here is a photo of MAC bacteria under electron microscope.

Perception

Perception is an interesting thing. Do we ever stop to check our perceptions? Is it even possible to check our perceptions in this world of instant communication?
We are able to instantly communicate a snapshot of our thoughts, opinions, beliefs, hopes, dreams, complaints, or criticisms to the whole world. Reaching out and making a statement about what is happening around us is quick and easy. Communicating the complexity of our lives is not so easy.
Knowing, or thinking we know, what others have to say doesn't even require any more effort than lying in bed, opening one eye, and barely lifting our cellphones to catch a glimpse of what is being said from "out there" in the world. Just this morning I read in bed that Elton John was boycotting Dolce and Gabbana because of something they said about surrogate kids, or IVF kids. I was happy to read about the boycott. I have always wanted to boycott something and this one will be easy for me!
I have recently started to use twitter more and I am finding it fascinating. 140 characters. That's what you are permitted to use on twitter to make and post a thought or idea. It really requires some practice at being succinct, but this instant world sure creates ambiguity. Is it REALLY possible to share an opinion or a value or gain insight and understanding in 140 characters? What I know for sure is that it allows for everyone reading your tweet to interpret it from their perspective.
An interesting "discussion" ( I don't believe interactions on twitter can really be called discussions) took place, which I was involved in, and it was in relation to the television show "Sister Wives". Sister Wives is a show in which a polygamous family, formerly from Utah, are shown in a reality television format. A few weeks ago a show aired in which the first wife Meri, offered to divorce her husband and allow for him to marry legally and adopt the children of his fourth wife Robyn. Of course the "world" has a very unique perspective of plural marriage and the show, I believe, was intended to dispel some of the myths surrounding polygamy. Having said that, I also know that this family is NOT the typical polygamous family, and what is portrayed on television is only one hour a week of their lives which has been edited for television - and skewed again.
On twitter there was all kids of reactions to the show - critiquing the decision that was made and the reactions of the wives which was aired. The wives all took to twitter, and Robyn started to answer questions about the scenario. I asked a question and was answered by Robyn (WHAT?! I was answered by someone who is a star in a television reality series! My degrees of separation to Kevin Bacon just got smaller I am certain) in a series of tweets because obviously she could not respond in 140 characters. What she essentially ended up saying was to not judge the family by what we see on television or what we read in tweets. Which makes me wonder why we bother then.
Why have a reality television show if you don't believe it realistically reflects "who" your family is and you feel judged by viewers? Why tweet if you feel your tweets are misunderstood?
Why update facebook posts? Why continue to reach out to the world in this quick and dirty, and often misinterpreted way?
I just read a book, " I am the messenger" about a guy named Ed who receives the names or addresses of  people and he had to figure out what message they needed to hear and deliver the message.  It reminded me of how we live our lives in relative isolation - where we are around people constantly but few people know the personal battles we fight.
Someone told me a few weeks ago that they wished they had my life and I wanted to laugh out loud and ask them what exactly they thought my life consisted of.
A family member commented that they couldn't tell from my facebook posts that we were having any struggles and then someone else told me today they were sorry for everything we were going through! Both of these people would be reading the exact same things on my facebook page - each applying their interpretation to what I am saying.
I'm certainly not going to stop tweeting, or stop posting on facebook, but I am going to try and be more aware of my own perception, and my own biases. I might think a little more about the perception I am giving others by what I am saying and even though it will take some extra brain power - I am really going to try and be aware of the restrictions that our instant communications have on being able to see whole picture - and, Oh,  I am going to turn down that request to star in a reality show.


* though it is not directly related really to this blog post I want to mention here that Taber, Alberta has recently passed  bylaws restricting swearing and gathering of more than three adults in the community. A twitter awareness campaign launched to get Kevin Bacon to come to Taber and "dance" in protest of the new bylaws. If Kevin hears about it (which I am certain he has) and if he decides to GO to Taber and be a part of this protest, I have plans on attending, in which my degrees of separation from Kevin Bacon will be NIL.

March 12 of 12

Here are twelve photos taken today, the 12th of March. 

When the baby woke up the first thing she wanted to do was put on her snowsuit. Then she had a tantrum I wouldn't let her outside. 

CJ said he couldn't go to school today because the cat was in his lap. 

Of course while CJ was still inside with the cat, max had scraped the van windows and shovelled off the deck and was ready to go. He's my hard workin man!

Insane freezing rain today. Roads were bad. 

Then the sun came out and everything started melting. 

My list of things to do - which I started to write on Tuesday- is not getting smaller. 

She always falls asleep in the car - never long enough to get a good rest. She is holding a painting she made for me. 

All she wants to do is go outside. He dressed her up when he got home from school and watched her in the yard. He takes his role as "big brother" VERY seriously . 

She is done sitting in a high chair. She only wants to be with the big kids. 

Baby selfie. 

Mom and baby selfie 

I get sucked into taking these surveys about the number of different kinds of books I have read. This was was for NPR's list of top 100 teen novels and I have read 53 of them. I have written down the ones I haven't read and intend on reading all of them. I am currently number 278 out of 22384 people who have taken the survey. Not bad! 

Homeless LGBTQ youth - Lost In America

What I assume you know about me is that I am queer. I have been out since 1997 - which for some of you is a VERY long time - longer than you have been alive. I came out when I was almost finished university and there was a  mixed reaction to my coming out within my family, BUT, I had already moved away from home and I was living and looking after myself - and so I never even faced the possibility of being kicked out of my house and of being homeless.

 

Having said that - my partner and I, when we were renting homes together in Utah , felt that we needed to present ourselves to home owners as sisters or roommates because it WAS legal to discriminate against us based on our sexuality and renters could chose not to rent to us based on this fact. We did what we needed to do to live together.

 

The fact is that there is a disproportionate amount of LGBTQ youth represented in the homeless population in the USA and in Canada. Homelessness is a problem which I think is an important social issue. The fact that LGBTQ youth are homeless because they are not accepted by their families and kicked out for coming out - is in my opinion, reprehensible. I STRONGLY believe in this cause.

 

So what am I doing about it? I don't know yet. I certainly think about it a lot. My partner and I are considering starting an organization in our community for LGBTQ youth - there currently is not one here - and we have discussed creating a homeless shelter for youth - all youth but specifically queer youth. While we still consider our options and look to the future to see how we can be a part of solving this problem I am supporting the fundraising for the movie "LOST IN AMERICA" right here on my blog.

 

What is it you ask?

 Check it out - and if you can - give some money to the organization.

 

 

 

What is Lost in America?

LOST IN AMERICA is a feature documentary that follows formerly homeless director Rotimi Rainwater’s journey to shine a light on the issue of homeless youth. The film looks at the many issues that surround homeless youth from sex trafficking to the failure of the foster care system to the lack of acceptance of LGBTQ kids.  Over the past year we have met so many amazing youth who are all fighting for the same thing, the American Dream. They are all looking for a shelter from the pain they've experienced and a way to get back the future that was taken away from them. The journey so far has been inspiring and has touched every member of our team.  So far, we have met with youth, organizations and politicians in 11 states and are fundraising to go on one final trip and finish shooting this important documentary.

 

It is estimated upwards of 1.6 million children and teenagers are homeless in the U.S. and nearly 40% of them consider themselves part of the LGBTQ community. One of the goals of LOST IN AMERICA is to understand our faults as a country that is forcing these youth onto the street. The film also looks at the failures and successes of the foster care system and the risk of sex slavery homeless youth often face. People walk by these kids day after day and do nothing to help, LOST IN AMERICA aims to change this. We would like to finish the film before next year’s film festival season begins; The film can’t help if it isn’t seen. In order to meet this goal, we need help. We need to raise 35K to wrap shooting and begin editing.

 

How to Help?

Donate to the IndieGoGo:https://www.indiegogo.com/projects/lost-in-america--5

 

Keep updated with the film:

http://www.lostinamericafilm.com/

https://www.youtube.com/watch?v=grDIyULWFFI

https://vimeo.com/92260272

https://www.youtube.com/watch?v=rMc8n8zZ5_U

 

Share your support online

https://www.youtube.com/watch?v=vZVBBpf9rmY

Tweet/Facebook/Email anyone you know who may be interested

I dreamed of Homa

I took a class in university on the psychology of dreams. The teacher was Dr. Atkinson and I loves him and loved the class. Shel hated him and hated the class. One of the assignments in class was to keep dream journals. ( I wish I knew where mine was!- I'd be interested to know what I was dreaming of 29 years ago!) I have very vivid dreams but usually as I am dreaming I am also aware I'm dreaming in spite of the realism. In the past I would not dream of people that I knew. I certainly dreamed of people, just not anyone I recognized from my day to day life. 

Last week I wrote about someone I was grateful for but whom I have lost contact with - her name is Homa. Last night I dreamed of Homa and in my dream we had reconnected and were having a reunion. It was SUCH a great dream. I was so happy and the reunion was so sweet. I wasn't aware I was dreaming (which is unusual) but made the dream seem more realistic. When I woke this morning I was still so happy to have been reunited with her and while the sweetness of the dream has stayed with me today it is now tinged with sadness. - it was only my imagination and I still miss my dear friend. 

52 Weeks of Gratitude: Week 7 : 5 characteristics I am grateful for in my kids

     1.       Determined (and Industrious).

My oldest boy has determination. He wants to do things for himself and he pushes himself until he can achieve what it is he wants. When he could get up on his knees all he wanted to do was crawl. When he could crawl all he wanted to do was run. When he could ride a bike with training wheels all he wanted to do was ride without them. Once he has a goal in mind he will work until he achieves that goal and so far we have not found anything that will distract him from reaching it!

      2.       Generous (and kind).

My second boy is a generous soul. He loves to share what he has – as I discovered again this week when he told me he was out of milk tickets because he shared with all his friends who didn’t have any!  In a project this week at school the kids were partnered with someone from an older grade to learn all about them. Ceejer has won some medals this season participating in various hockey tournaments and found the person he was partnered with had no medals. He came home and asked if he could take one of his medals and share it with his partner who never had any. He comes up with these ideas all by himself.

3.       Patient (and reliable).

My third little man is very patient. He puts up with the kids both older and younger than he is. Of all the kids he is the most patient. His little sisters adore him – and while they also adore the older two he lets them play with him, climb on him, and engage with them in games THEY want to play. He also indulges the older boys when they are looking for a partner in crime. For a guy as young as him this is a real skill!

4.       Independent (and outgoing).

The oldest girl in our brood is insanely independent. I thought we had independent kids before her – I was wrong! She will do EVERYTHING herself. Dress herself,  get into her car seat herself (and out of it!), basically if it can be done, she will do it. If it can’t be done, she will also do it. She is also the most outgoing of all the kids, but her younger sister might give her a run for her money as she gets older.

5.       Cheerful (and curious). 

Our little bean is the most cheerful kid I have ever known. She is also curious- which I used to think was true of every kid, but believe me, we have some that aren’t! She has always been such a happy kid that she is a joy for everyone to be around. I know I look forward to being around her.

I found this article which really resonated with me and so I am posting it with a link to the original blog. Enjoy!

Special Needs Parents are Hard to Get Along With

NOVEMBER 4, 2014 ELLEN STUMBO 

Perhaps some of us special needs parents have snapped, yelled, spit, or barked at friends or family, leaving them utterly confused about our behavior. Who can blame them for thinking, “Well that’s the last time I talk to her!” “What’s wrong with him?” “Is hisdisability sarcasm? He is so rude!” “Every time I talk to her I’m walking on eggshells!”

Someone googled, “Why are special needs parents hard to get along with.” And well, I don’t blame them for feeling that way…sometimes.

So let me start by saying that yes, sometimes, we are hard to get along with. If you caught us on a bad day, I could see why you turn around and walk away the next time you see us. But that is not the whole story. Yes, sometimes we can be abrasive and rude and sarcastic and hard to get along with…but there is a reason.

You see, so much of the world sees our kids as unlovable, as people without value, as a burden. Even the professionals that are supposed to be on our team can unfortunately communicate that our children’s lives have less meaning, and those messages might even come from the people who are close to us, like family or friends.We feel so alone, but if we don’t fight for our kids then who will?

And we fight, we fight so hard for our children to be included, to be considered, to be given a chance. We are on the defensive, constantly. It’s a battle, a battle that sometimes keeps us up at night, and unfortunately, we have to keep our guard up so often that we forget that there are times when we can put the guard down.

Sometimes we might be hard to get along with. But not always.

I think you would agree that it’s not easy being a parent. Being a special needs parent feels a little bit more challenging.

Would you extend me some grace and know that I have hard days? Will you be willing to forgive the rudeness and the fight? Some days I feel so vulnerable that ugliness comes out, when really, what I need is a friend, someone that I can talk to, someone that will listen, just listen.

And I need to remember that too. I need to extend that same grace to you, because you do not live a life directly impacted by disability, and I cannot expect you to be at the same place of understanding I am at when this is not your life.

I knew so little about parenting children with disabilities when I started this journey. Actually, I knew so little about being a parent before I became a mother! I am still doing the best I can for all my kids, learning, messing up, some days getting things right. Being a special needs parent is not something that anyone can be prepared for. You just have to live it.

So I am sorry if I have ever offended you, it was not my intention. And I need to remember that as well, that you never intended to be offensive either. If I am hard to get along with, please offer me some grace. I will do the same for you. I know I need to extend the same consideration I want to receive back.

I need your friendship, I need your support. And I like to believe that you need mine too, because this giving and taking is part of friendship.

Let’s do some more grace giving, some more forgiving, some more laughing, some more, “No big deal!”

A postscript: Some people are simply mean and inconsiderate human beings who have no qualms at making derogative comments. Well then, you had that coming, nobody messes with our kids.

52 weeks of gratitude update

I know this is supposed to be focussing me on gratitude but I  am not liking this this list. While I like the IDEA of gratitude and I try to be a grateful person, I am apparently easily annoyed.
I thought it would be fun to write about things I am grateful for, but I am not grateful for an annoying list. The first week we were supposed to write why we started the challenge. I think it is good to have a preface for why people want to do the challenge but the list is for things we are grateful for so how do I write how I am grateful for “why start this list?”

Then the way the items are categorized puts week two with spouse, week three with family, week four with a family member which makes three consecutive weeks writing about basically the same thing. If you are reading along with me you will know that i mixed it up a bit so that I WASN’T writing about the same topic three weeks in a row.

Here are some of the other things on the list I have a problem with writing what I am grateful for - Week 9 : “How did you do and feel” – and what does that mean exactly? Express gratitude for “how did you do and feel”?  Week 10 – five things you like about you . So that goes – I am grateful for these five things I like about myself? I find that strange. Week 12: Your favorite personality trait. Then I am supposed to write how I am grateful for the things I like about spring, summer and winter. I am grateful for something I look forward to in week 33 and then in week 51 I am grateful for a list of 100 things I am grateful for? 52 things I am grateful for became all of a sudden 151 things I am grateful for?

What I am grateful for is the opportunity to reflect weekly on gratitude. What I am not grateful for is the list I chose to follow – so I am un-choosing it!  I will partially follow this list and I the rest I will fill in myself.  Chances are if you were watching the list and waiting with baited breath for me to write about how I am grateful for how I did and felt – you might want to take a deep breath now – cause I’m not doing it!

Transitions - FAS

One of the things I posted about in an earlier blog on FASD was “transitioning” – moving from one thing to another. Transitions happen all day, every day without us even being aware of it. We transition from sleep to wake, from bed to breakfast, from breakfast to the bathroom, then to work, then from task to task at work... you get my point.  Some people on the FAS spectrum have difficulty transitioning from one task to the next.

For example, I am a follower of time. So I would prepare the kids to go to bed by saying – it is bedtime in ten minutes, it is bedtime in five minutes, it is bedtime in one minute, it is time to start heading up the stairs to bed now.  While this “preparation” - letting everyone know that the transition was coming up – helped for some of our kids, we still had one that would start to cry, no matter what, every night. Did I mention EVERY NIGHT? Sometimes transitions cause tears, sometimes tantrums, sometimes complete nuclear meltdowns. It was frustrating for me because I like SMOOTH transitions and I was using a tool that I felt should work for everyone. My spouse – in all her infinite wisdom – one day pointed out to me that my transition process, though it seemed like it was natural to me, was unnatural to the child who was melting down because we had started a video (another part of the night time ritual) and the video had not come to a complete end. While I viewed the announcement of time intervals as being helpful, it still seemed unnatural to our one child because the show had not ended. I have had to adapt my preparation for transition to bed.

Another of our children has difficulty with transitioning from being on the school bus to being at home. It is a long ride, he is hungry and thirsty and tired, and the rules of the bus and the rules of home are different. On a daily basis he would fall apart before even making it to the house. One thing that we have made readily available is a snack for the kids IMMEDIATELY. They need to have their sugar levels raised ( kids on the FAS spectrum burn more sugar than other kids – which is a post for another day) but having that increase in blood sugar levels is CRITICAL to us at that time of day to assist with that transition.

Unfortunately, not every kid has difficulty with every transition and not every strategy works for every transition, and then to further complicate matters, not every strategy is successful every time – even if it has been successful in the past!

What I need to remind myself of is that it is not my fault that the kids are having meltdowns. It is not my fault that the kids are having trouble with transitions. It is not my fault, and it does not make me a bad parent. It isn’t about me! It is only my responsibility to not get upset and to continue to look for ways to assist in easing the transition.  I had to remind myself of this last night. Our kids had been at respite for a few days. Although the break is needed to recharge our batteries, the transition for the kids from being at a respite provider to coming back home is fraught with tears, and tantrums.  We sometimes skip the respite so we can avoid the transition!
I went to pick up the kids and I was VERY happy to see them. I missed them a lot. Some of them were thrilled to see me. One of them was not. He was mad, he stomped his feet, he yelled, he said unkind things. I reminded myself he was struggling with the transition and I spoke to him quietly. I told him I loved him no matter what and that I was sad he was not happy to see me (he said he wasn’t) and that I was always happy to see him and to have him come home. He even let me hold his hand as we drove home.

He was still mad, he still stomped his feet and said unkind things, BUT I was able to handle the transition better because I didn’t get upset that he was not happy to see me. I had to keep an internal dialogue goin, I won’t lie. I want the kids to be happy to see me, but I need to understand that it is not something they are in control of, and if I get upset about it the situation does not improve!  Sometimes I do better at this than others. Last night was a particularly good night for me because I was remembering these things and trying to put them into practise, but believe me we have had some UGLY homecomings where I felt like the kids were better off to stay in respite if they hated coming home so much.

This morning his transition from sleep to wake was a great one and he was happy to see me this morning. So all is good for now – until the next transition!