Purple Pictures

We had a lot of participation for Purple Day this year. I loved getting pictures throughout and seeing my Facebook explode with Purple Power. We're going to have to snag a family picture on Friday, before our Dravet event. Keep sending your pictures, we love them!

From working out, to working at the dentist office. From service dogs to sisters. Friends, family, at least 9 states represented. Balloons, pedicures, and one awesome pair of sparkly purple corduroys! Hopefully they all thought about epilepsy a lot. Hopefully you thought about it too. International Epilepsy Awareness Day was started by a girl that most would call "little". She has made it into a worldwide movement. Here is our little piece of that.

Some would say...Why the purple? Why the hype? This is why.

Epilepsy sucks. Talk about it. Maybe one day we can find a cure, together.

It's Here!

We are wearing purple. Are you?

An Illustrated Guide to Our Week

Warning: I can't make this stuff up. You will laugh, you may cry.

Sunday: Slugger ate one entire wall of Cole's Lightning McQueen tent. Awesome. Painted my toes purple in anticipation for International Purple Day. Cole utilized his REAL pillow pet.Monday: Cole wakes up in a great mood and proceeds to use my yellow heels as accessories. "Mom, look at my earrings!"
Cole goes to school. Nurse goes home. We go and get my kitchen knives sharpened, had to wait 2 hours when they initially said 20 minutes. Come home and have this, complete with over a minute and a half of O2 in the 40's. Goal to make tomorrow better.
Tuesday: A day for the books. Cole literally was awake maybe 2 1/2 hours all day in between seizures. Even when he was conscious, he could not stand up and I found him curled up in a ball or laying on the ground multiple times, because he did not have the strength/equilibrium. Cancelled a fun play date with friends. Had to miss therapy (and still pay for it). Our air-conditioning breaks. Have temperature sensitive child. Got to make trifle! I hear it was good.
Come back from Relief Society and get this on my screen. Computer crashes, dead as a doornail. Lose all apps, movies, photos, documents...everything.
Wednesday: My new cookbook finally arrives, after I pre-ordered it months ago with a gift card I have been saving for almost a year. Love Pioneer Woman. Have been reading her blog years and years. Takes me back to my roots and major plus, it is really funny. No nurse.
Our landlord is not known for spending money (read: major tightwad). We have nicknamed him Master of Creative Maintenance. His favorite fix is duct tape. Alas, his solution to our rotting floor? Slap parkay patterned duct tape (aka vinyl tiles) over the top of the existing floor. Oh, and they are a lovely shade of orange. You would not believe his first option. I just look at what Cole has dubbed "The Squares" and laugh. We could seriously base a sitcom around his fixes.Thursday: No nurse, again. This is a Weeping Cherry Tree in my backyard. I gave my bestie a matching one for her 30th birthday last year. I told her that it signified my new home, since Cherry blossoms are a big deal around here, and that I was sad we do not live close to each other any more. She loves to garden, so it was a hit. However, I looked at this tree on Thursday and burst into tears. There are beautiful blossoms right now, but the imagery was fresh. There was lots of weeping on Thursday. Another Dravet child has been taken home. This time, a child of someone I knew. Someone who doesn't live very far from me, and this child was just a little younger than my own son. It hit way too close to home. Week is weighing on me. Make new goal for a better tomorrow. Hug my baby.Friday: Decide that Cole is doing good today, so stop by the farm to make up for missing it on Tuesday. Here is Cole with some new piglets. Slugger alerts like crazy and Cole gets so overstimulated he doesn't want to stay long. Sure thing, we need to go to therapy anyway to make up for missing Tuesday.
Get to therapy, Cole has a long, weird seizure where he chokes me in the process, poolside-right before the session starts. Doesn't even get to dip his toes in. Still have to pay :) Air conditioning breaks, again. Take Cole to the park, and then we all eat dinner (at a restaurant) with friends. Seriously people, we could not figure out if that has ever happened before. We may have acted really weird/excited about it.Saturday: Rain gives us some relief from the heat. Convince landlord to break down and buy a new air conditioner. Cole has a great day. Try to purchase the right belt for a dress. Now have to go through the process of elimination to decide which is the one. Feed the missionaries. Go to Hunger Games with a couple of friends while Cole and Daddy chill at home.We start all over tomorrow. Except that we have a lot of epilepsy awareness on the horizon! Remember to wear purple on Monday. The National Walk for Epilepsy is Saturday and we get to see some of our Dravet friends on Friday night! New/old goal-embrace today while hoping for a better tomorrow.

Time To Put On My Big Girl Panties...

I have been putting off getting a wheelchair for a long time. Cole fit in the stroller and it met my needs.

He uses a wheelchair at school when he is post-ictal. When we are using our stroller though, Mr. Long Legs has started to hang his giant limbs, inherited from his Dad, over the foot well. Remember-I am what they call short. We have a special needs umbrella stroller that was donated to us. It is huge, has no storage for the oxygen and you need both hands to push it. I took it out once and I couldn't shoulder the bag, the oxygen, push with both hands and handle Slugger at the same time. Plus, it does not have a sun shade. So, it looks like I am going to have to crack down and go the other route.

It wasn't so much that I would have a child who needed a wheelchair, I think that I came to terms with that a while ago. Although it doesn't mean it was easy to accept. It is the paperwork.

Oh, the special needs mom and paperwork! It. Never. Ends.

Along with the mountain of paperwork and the evals that will have to be done before we can attain an "official" chair, there is the matter of how heavy they are. Along with being vertically challenged, I don't have a lot of cartilage in my rotator cuffs, especially my right (dominant) arm. It makes lifting a challenge. Some of the "lightweight" chairs out there are 80 pounds! I also can't get a new car, lift, etc. for something that we are not going to use on a daily basis.

Every model I have been looking at over the last year have had something missing. Therefore, it just helped my procrastination.

Enter BFF. She went to the Abilities Expo in Atlanta this year and took quite a few different products for a spin. Among other things I love about her, I trust her judgment explicitly. Low and behold, she found a chair that fits all of our needs!

*Needs to be able to recline-Cole can not hold his head up post-ictal.
*Needs a sun shade for our photosensitive boy
*Needs under mount storage for the oxygen tank
*Needs handle push bar so I can use one hand if necessary
*Needs small turning radius, maneuverability and can go on dirt paths -remember our trips to Mt Vernon? Oh, and that Golden Retriever!
*Needs 5 point harness to discourage escapes
*Needs to fit into our current vehicle
*Needs to be lightweight

I think we found a winner! Be on the lookout for Cole's new ride. That is, after I can finally finish all of the paperwork and order it :)

Professional vs Personal

Here is another article that I wrote for specialneeds.com
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In my previous life (before I was a special needs mom), I was a social worker. My resume is almost as eclectic as I am and I worked with a large variety of people. Foster care, adoption, child protective services, group homes, palliative, Native Americans, teenage sex offenders, elderly, abused, medically fragile, addicted, you name it...I probably ran into them.

During this foray into my personal version of saving the world, I came across many, many people with special needs. My vocabulary included things like Individualized Education Plan, hippotherapy, Autism Spectrum Disorder, Durable Medical Equipment, tidal volume, Advanced Directives and a whole host of other words and phrases that we, as special needs parents, are all familiar with. I had no idea that I would be using these words in my day to day life, when I was not working.

As a director for several companies, I was able to meet and hopefully help parents, siblings and children navigate "The System". I also became fluent in speaking Insurance and Doctor. I seriously believe that those languages should be taught in college. It will get the average person a lot farther than a semester of German! Familiarize yourself with the right terms to keep up with the new foreign languages that will pop up in your journey.

I also learned that YOU are your child's best advocate. You know them the best and you want whatever is going to improve their quality of life. There are a lot of people out there to help you through this, but they will never know your child like you do. Anyone who is disabled in any way needs someone to advocate for them. As a parent, it is your job to second guess. Ask the hard questions and fight for what you believe needs to happen with your child.

Sometimes it can get so overwhelming that you just sit back and nod your head, letting the professionals tell you what to do-because they are professionals! I am not bashing the medical professionals out there. Hey, I used to be one of them! They went through a whole lot of school, tests and other stuff to get them where they are today. Without these professionals, the majority of us would not have a diagnosis to explain what is happening with our child. I used to have to tell my patients all of the time that they practice medicine. Trust them, but be smart enough to do your homework. I also learned that Google does not have all of the answers. Surround yourself with the right people. You have the right to get a second opinion if you want! I think that some of us forget that. Still, go with your gut and follow that "Mommy Instinct" if it tells you that something isn't quite right. If you do not get the answer that you want, ask someone else. "Who is your boss's boss?", is a great question when you hit a roadblock. Come prepared to meetings and research new ideas to present to your team, whether it is at school or a doctor's office.

Right along with being someone who gets answers, you are the best person to show your child love and affection. Sometimes we distance ourselves from things that are hard and make us sad. After being a social worker for years, I have realized that not all mothers love their children. If you are reading this, you are probably not a part of that group. No one can love quite like a parent. Be willing to give professionals all of the information that they need to get to know your child. Talk to other parents who have children with similar capabilities. Above all, don't be afraid to ask for help. You might be surprised who ends up being your personal champion.

I personally wanted to be a social worker because I could help people. It was not because I wanted to be rich or famous. It was hard, mostly thankless work. It really prepared me to be a mother. The people who are helping you today are probably there for the same reasons, they just probably get paid a lot more than I did! In the end, no amount of education can provide the same insight that a parent can.

Overwhelm or Overcome?

So the other day I was driving along enjoying the gorgeous weather and blooming trees.

I had just finished grocery shopping and was reminiscing that it had been exactly 3 years since my heart surgery. I was thinking about how I have only had 2 seizures in that time. How wonderful is that?!

So, I am just cruising down the street, singing with Adele, thinking good thoughts. On the sidewalk, I see a father pushing a baby in a stroller, obviously enjoying his day too.

and then I had to pull over because I had the wind knocked out of me and felt like I was going to sob

Man, I hope this gets easier.

7 Things You Don't Know About A Special Needs Parent

I really liked this article.