Monthly Archives: March 2016

Here are some reasons to vote . . .

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Aidan Jack Seeger

I have a favor to ask of all of you who read this blog. VOTE YES!!

Aidan’s Law will require ALD screening in all fifty states. Many of you won’t need persuading to stop what you are doing and sign this petition, but some of you may pause and wonder if, in a world full of issues, we should be focusing too much attention and money on a rare disease. This post is for YOU. I have five reasons you should consider signing.

1. NUMBERS

As far as rare diseases, ALD is not so rare.

The current guess is that ALD effects 1 in 17,000 people. I say “guess”, because as our country does more testing, we are finding that many people have been mis-diagnosed with other diseases. ALD is a disease that winds it’s way through families and often does a good job at hiding for a generation or two and masking itself with a variety of symptoms/timelines/etc.

2. SURVIVAL

Aidan Seeger’s story is all too common with ALD. Without the luxury of an early diagnosis, the disease is allowed to devastate the body, stealing one thing after another as a family struggles to figure out what’s happening. Once a proper diagnosis is made, the options are limited and often prove to be too late for an already worn out body.

When Jack was first diagnosed, we found a half-dozen other families who were going through the processes of stem cell transplant (still the most popular treatment option). Jack is the only one of those boys who is still alive.

3. QUALITY OF LIFE

Jack is fortunate to have been diagnosed with just enough time to receive treatment and with just enough luck and energy to survive. Unfortunately, ALD did managed to steal much of his quality of life. While he is happy and doing well, he is fully dependent. We feed him, hydrate him (through a tube in his belly), medicate him, dress him, toilet him. He needs someone to walk him from the den to the kitchen. And, Jack is doing far better than some of his ALD peers. Most of these boys are in wheel chairs and many have significant hearing and vision loss.

4. MONEY

Many people are hesitant to stand behind and pour money towards an unknown disease. It’s important to understand just how expensive it is for our society to raise boys who survive after a late diagnosis.

Jack’s education costs almost $100,000 a year. He requires (and receives) physical therapy, occupational therapy and speech therapy several times a week. He has an aide who’s job it is to work solely with him, because he is not able to maneuver through his day at his special needs school.

Jack is turning 18 in a few months. An eighteenth birthday is usually celebrated with a party and the honor of voting, being able to serve in our military and applying for college. For Jack, his birthday comes with Dan and I applying for guardianship and Jack becoming eligible for both Social Security and Medicaid.

Jack is a very sweet and VERY EXPENSIVE member of our society.

5. IN CASE YOU NEED MORE

It would have been heartbreaking to learn when Jack was just a baby that a gene was lurking in his body that would likely someday need complicated treatment. It would have been difficult to find the proper doctors to monitor his development as he went through childhood. It would have been devastating to get the news that ALD had started it’s war on Jack’s brain and that we needed to drop everything and proceed with treatment.

BUT this would have happened with enough time that right now Jack would be approaching his eighteenth birthday with a healthy body and a future full of opportunities. If only Aidan’s Law had been passed 18 years ago.

There are 402 more signatures needed on this petition. Let’s help get this wrapped up today. Thank you to the Seeger family for devoting their lives to this cause.

AIDAN’S LAW – VOTE NOW!

Love, Jess

 

Shame on you Facebook lady

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Yesterday morning, as I was wandering through Facebook, I stopped at a comment which started with, “To the person who stopped to yell at me in the parking lot . . .”. I had a few minutes to kill, and those posts are often fun to read, but as I scrolled down my blood started to boil. The person was complaining that she had been scolded for parking in a handicap space without the proper placard (or a proper DISABLED person). She went on to say how busy her life was and that she has used that spot every day for two years when she drops off her children at day-care.

Without much thought, I started my response. My hands were shaking and I had tears in my eyes. She had struck a nerve. I’m not sure exactly what I wrote, but I used the words, “shame on you” more than once. I hit send hoping that my words would make her think and realize the sin she had committed. Instead, I watched as she continued to make excuses and ultimately take down the post.

I’m going to give it another shot now that I’ve had a little time to regroup. I know it’s unlikely that she reads this blog, but venting always helps me feel better.

To the woman who posted on Facebook about being yelled at in the parking lot –

I wish you could understand that those of us who have the “luxury” of convenient parking wish that we did not qualify. It took our family years to come to terms with the fact that it was not safe to maneuver our son through parking lots. That our pride was putting our son in danger. We now appreciate knowing that we can find a parking spot close to our destination so that we can easily come and go – quick exits are often as necessary as easy entrances when you are caring for a person with challenges.

And, our family is among the “lucky” placard holders. We appreciate the safety of a close spot – the ability to limit the amount of steps (or hops) it takes Jack to reach wherever we are headed, but many of our friends are literally not able to park without the added space that a handicap spot provides. They are unloading large equipment – walkers, wheelchairs. There is no other option for them.

Handicap placard holders are not just driving around looking for parking. We are living full lives. We have deadlines and commitments. We are busy too. Accessible parking doesn’t just provide connivence, it provides people with disabilities (and their familes) some independence.

I remember my hands being full when my kids were little and I was late. I remember my back straining as I unbuckled the kids, grabbed the diaper bag and extra snacks while yelling, “Don’t move! Let me get your sister!”. I remember holding tiny hands and praying the rain would hold out just one more minute so that we could make it through the parking lot.

I remember those days, and all I can think now is just how easy it was.

Shame on you Facebook lady.

Love, Jess

 

Anna just keeps pedaling

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When Anna was five years old, she came home from her friend Zoe’s house and told me that I needed to take the training wheels off her bicycle, “Today Mommy. You need to take them off today.”

Even as a little girl, Anna would get a look in her big blue eyes and I would know that she meant business, but I was curious about the timing, “Why Anna? Can’t we wait a bit longer? Don’t you like the safety of the extra wheels?”

“Moooommmm. I’m five. Besides, Zoe showed me today that she can ride her bike ALL BY HERSELF!”

That was it. There was no way that my daughter was going to let someone else enjoy even a second of glory without jumping into the game. That’s Anna. She was born determined to prove that she could do anything. It’s who she is to the core. And, it’s never been just to show off. She never really even required a witness. She just needs to prove it to herself.

That afternoon, I dug Anna’s bike out of the garage and took off the training wheels. We strapped on her Dora the Explora helmet and off she went. She started on our front lawn, “This is what Zoe said worked for her.”

There were a few spills on the soft grass before she got the hang of it. Within a half hour she progressed to the sidewalk and she’s been pedaling ever since.

Anna is now in high school, and her determination seems more indestructible than ever. It’s not just in the classroom and on the lacrosse field that she has a need to succeed. She seems equally determined to master everything from a Rubix Cube to memorizing presidents, country capitals and the Periodic Table. To date, she has yet to find something that she cannot master, but Dan and I can’t help but worry.

When is too much — too much?

I was never much of a shining star as a girl. One benefit of being mediocre is that no one expects too much from you. In fact, you get all sorts of encouragement and support and plenty of “clap outs” for every small accomplishment (I do love this). Dan, like Anna, was born determined, and it certainly reflected positively on his school work and career, but it has caused some disappointments and significant stress along the way. And, he did not have the added pressure that we fear Anna carries.

Anna is our only child who gets grades and plays sports. She is our only child who will go to college and have a career. She is our only child who will fall in love and have a family.* Dan and I try our best to alleviate the pressure and not focus too much on “being the best”, but it’s there. It’s been part of who Anna is since she was a little girl. As much as she does it for herself, Anna also loves to see her parents applauding her accomplishments. She knows we have our plates full with Jack, and is determined to make parenting her as easy as possible. This silent pressure must be stressful, but I’m not sure what to do about it.

How do we proceed? Do we stop posting her report cards on the fridge or cheering loudly at her lacrosse games? Do we discourage her from signing up for another AP class or stop her from all of her extracurricular activities?

We have tried praising more of her behavior and less of her accomplishments. We also try to remind her that she is not a grade on a paper or goal on a field. She is Anna, our daughter, Jack’s sister, a wonderful friend and beautiful human.

Special needs siblings are taught early that life is not fair and that their needs aren’t always the priority. They learn that their parents can’t take too much extra nonsense without potentially cracking. I’ve seen it again and again — special needs siblings grow up early, carrying more than their share. So far, this extra weight has added to Anna’s muscles, I just hope it doesn’t some day weigh her down.

For now, Dan and I just keep reminding her, to take it easy. “Work hard, try your best, but remember you’re just a kid.”

We keep talking and talking, but no matter what we say, I’m not sure we will change anything in our girl. Anna is Anna. She just smiles at us and keeps on pedaling.

Love, Jess

 

* In fact, Jack falls in love often and has plenty of girlfriends to prove it. I’m not sure how realistic it is that Jack will have a family of his own, but stranger things have happened – just turn on CNN.

a contagious mood, wet socks and a birthday

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The other night Dan and I had a moment.

Jack needed to be shaved. This is something that I don’t see – or I see, but I don’t care much about. As long as Jack is clean and clothed, I don’t worry about shaggy hair or a stubbly face. If anything, I feel like it makes him look like his typical peers. What 17-year-old boy is always clean shaven? I also don’t “see” the need, because I don’t want to.

Shaving Jack is a two person job. One person needs to hold him. Not gently cradle his arms, but forcefully pin him down, as he thrashes around like he’s being assaulted. The other person holds the electric razor, and does their best to hit all the necessary spots without doing too much damage. It’s a nightmare that I prefer to avoid.

Unlike me, Dan likes his son to be perfectly coiffed. Luckily, this means he usually takes the initiative, and does his best to recruit partners and leave me out of the rotation. Unfortunately, Sunday night Dan had run out of options and brought the razor into the kitchen as I was finishing the dishes, “Jess, it’s time.”

I’m not always as amicable as I make it sound on this blog. I have my moments. Sure, I helped shave Jack, but I did it with a long face and a bad attitude. Then I felt obligated to discuss why I shouldn’t be responsible for any razor activity, “I do most of the showering and diapering around her. Shaving is just something I shouldn’t need to do. You had all weekend to find someone to help. And, when was the last time anyone else walked the dogs (not sure why I had to throw this in)? This is NOT FAIR!”

There is nothing more contagious than a bad mood.

By the time we were done shaving, Jack’s mischievous grin had faded and Dan cleaned up the loose stubble without a word. NOT FAIR. That’s all I had to say to have each of us silently making a mental list of all the unfair crap that we need to deal with on a daily basis. We went upstairs to finish our nightly routine, feeling frustrated and sorry for ourselves.

Dan sat Jack on the potty, and we started getting ready for bed, both of us too upset to even look at each other. I threw on my PJs as Dan went into our bathroom to brush his teeth, “I’ll put Jack to bed.” I said as I trudged down the hall to get him off the toilet.

I walked into the bathroom and my socks knew before I did, “Guess who went pee in the potty! Or, not all the way in, but ALMOST.”

“Way to go JackO!” Dan hollered out from our room. I could hear the smile in his tone.

A little pee, and the mood was broken. Our family is complicated, but it’s okay — we just need a lot of extra socks.

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I put Jack down and crawled into bed next to Dan (after changing my socks). I gave him a huge hug. I am so lucky that he’s my partner in all this.

Today is Dan’s 50th Birthday! I know these big milestones arrive with mixed emotions, but I hope as he goes through the day, he realizes that he means the WORLD to us here at 26 Clinton Ave. He’s Anna’s hero, my best friend and Jack’s barber (and best friend and hero).

Love, Jess

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