{Although I have needed to remind myself of that many, many times in the past few weeks.} 

We ARE lucky. Some kids die of rare disease.

We live with one, which is a totally different animal altogether.

And never have I been more aware of that, than this past month as I have been working closely with parents of children diagnosed with rare diseases on the Vote4Hope Pepsi Refresh campaign for Children's Rare Disease Network.

I have been reading their blogs and posting their children's pictures...and crying. A whole lot of crying. Although to be completely honest, some of the crying has nothing to do with them.

It's about me. Us.

But, mostly me.

You see, we have another diagnosis lurking. One that is not so rare at all. And I find myself agonizing that my luck may have just run out.

No, this new diagnosis is not going to kill him. {Although, it very well may break my heart.}

The thing is, as crazy as this may sound, I feel like I am really losing my son this time.

Him, the person. 

Or the person I imagined he would be when all this "other" stuff was resolved.

The person who could speak AFTER the Trach was removed. The person who could eat AFTER his jaw was moved. The person who could hear AFTER the ear reconstruction was done.

The cute kid with the big personality, the dreamy eyes and the bouncy curls was going to do all those things and more.

And he was going to live happily ever AFTER.

One day, some day... AFTER all this bad stuff was done.

 ***record scratch***

Nice dream. I know, I know.

But now my rich fantasy life has been disturbed by reality once more. And somehow, this seems harder to grasp than the life threatening condition he has now.

Weird.

Lately I have been wondering, 'Is it just me or do his eyes seem little less dreamy?'

Turns out, No, it's not just me. Nearly everyone agrees. 

My son is getting lost {somewhere in the Autism Spectrum.} 

This has me a.) worried b.) fearful c.) out of my element. KWIM? 

I am used to being the "rare disease mom", the "trach mom" and the mom who is a fierce advocate for her child.

I have no doubt I will learn how to be that other mom too. {It's what I do.} I just wish I didn't have to learn about this too. 

And, yes I know. 

I am still lucky.  My son is alive.

Janis Marie is a full-time mom, freelance writer and blogger. Highly regarded and respected for her ‘tell it like it is’ approach; she created and maintains a blog, Sneak Peek at Me to chronicle her son’s life and complex medical journey. 

Through her blog and affiliations, Janis works year-round to promote awareness and acceptance for those living with a rare disease diagnosis.

Want to help Vote 4 Hope? You can visit our website or join our Facebook page for more information.

Four weeks later I am happy to post that I have been able to get up in morning. I am dressed. My underwear has been changed. My teeth are brushed. I still love my husband. I can still smile and laugh; not bad for four weeks.

But it is quiet. Samantha was not verbal but our house certainly was noisy. It was full of therapists, nurses, equipment deliveries and calls to Children's Hospital. She kept our world busy without ever saying a word.

And now it is quiet. The silence is tangible; you can taste it. You can feel it.

We lost both our children to this awful mitochondrial disease. My husband and I are both healthy but deep down in the realms of crazy DNA, something goes very wrong when our genes decide to hook up.

Because of this, we will not have anymore biological children.

Would you adopt? I've been asked.

Would we adopt?

And my question to myself when I'm asked this is.....am I enough?

Am I enough?

Is my husband enough?

Are we enough to keep each other happy? To live a life without children?

To be a mother has always been a dream. The one thing I knew I wanted in life. And now I'm not so sure. My motherhood experience has been life-changing, heartbreaking and yet still wonderful but I don't think I would do it again.....

Not knowing what I know now. Hellish journeys tend to detour me from heading down that same path.

Are we enough?

Maybe we'll go on safari. No we don't have any living children but we did see a lion.

Sounds silly and inconsequential doesn't it?

Maybe we'll travel the world.

Would that be enough?

It won't. It couldn't. Being enough has to come from each other, from our journey together, from something deep within ourselves; from memories, from love. It will take time but maybe we could be enough.

We have to be. 

Although I would like to go on safari.  

You can find Heather at Samsmom

My daughter was homebound as medically fragile until almost age 6.  I wasn’t able to put her in typical daycare, or even a home daycare with 2 or 3 other children.  So I basically worked to pay a one-on-one Nanny because my child was under my primary healthcare insurance and I had to keep her covered. 

Other things I’ve done included working from home, which is especially handy because there was one year she was out of school 11 times and each time could be weeks, not days.  I’ve also waited until my husband got home from work to watch her to make up my hours.

You may want to look into non-office jobs.  I’ve worked swing or night shift (after 6) as a store manager, child care worker, home health aide, etc.

At one point to pay her therapies that weren’t covered by school or insurance I actually worked 2 full-time jobs.  I worked while she was in school, then again evenings and weekends when my husband could take care of her.  I did this 70 hour a week thing (10 hours/day all 7 days a week) for 7 years (and lived to tell the tale).  It was strange but somehow I actually spent more quality time with my daughter because I was with her 3-6p.m. and more energetic than after “regular” work hours.

Something I found extremely helpful was working for Mathematica Policy Research, which was another of those evening/weekend hour jobs.  There are many research companies that hire folks outside of the usual 9-5 hours because that’s when they can reach the most people who are working to do interviews.  I want to stress that this is legitimate research (do your homework on the Better Business Bureau website) and not selling or cold-calling.  Most people know you’re calling because you set up appointments at their convenience. 

Now I’m working one job (hooray) like typical people.  But again, I have flexible hours so it doesn’t have to be 9-5 and can still make up hours if she’s off of school for whatever reason.  NOTE:  In summer she has extended school year and also camp.

Something else families may not know is they can take unpaid time off under the federal Family Medical Leave Act.  In addition, some states like CA, NJ, and WA now have paid leave. 

The most important thing is to communicate with your boss if something changes in your family.  Can you work from home?  Can you job-share with another employee or work part time?  Are flexible hours possible?  There are many possibilities thanks to the availability of doing work by phone, email, etc.

Remain Hopeful,

Lauren

Resources:

Family Medical Leave Act 

www.dol.gov/whd/fmla/index.htm

States that have paid family leave

CA www.paidfamilyleave.org

NJ http://lwd.dol.state.nj.us/labor/fli/fliindex.html

WA http://familyleave.org (eff. 10/12)

Who lives in Los Angeles? I'll be there from September 25 through October 2, and would love to get a group of Hopeful Parents together! Please e-mail me. I'm thinking of this as our first membership meeting, so if you do plan on coming...I also hope you will join (if you haven't already).

Awareness Campaign in November

In November we're are looking to do a major, national awareness campaign on our health as "extreme" parents. We'd like to remind all of you to take care of yourselves, we'd like you to remind your friends who are "extreme" parenting to take care of themselves, we'd like to provide tips on self-care...and, we'd like to promote all of it through the media.

In order to gear-up for this, we need to do a few things:

1. Get some cash in the bank. We have $422 in the bank right now. To distribute a press release that goes to the right people, nation-wide costs between $600-$900. How are we going to get the money we need? Through membership. Please join! We need an additional 25 members at least to meet this goal.

2. Understand which issues affect parents. Please take the Hopeful Parents Health Survey so that we can speak intelligently about your needs.

3. Stay tuned...we are considering finding families to profile on their local news stations as part of this campaign. If you are a member, you will receive a direct e-mail about this, so please join if you're interested!

Please Join Hopeful Parents

I think the message here is probably getting clearer. We need members! In order to lift our organization off the electronic page and into daily life, we need to start counting ourselves. I do hope you'll consider joining Hopeful Parents. In the coming year, we will have more gatherings of us in other cities across the country. And as a member, you'll be the first one to hear about important initiatives (like the local news stories) when they arise. As a member, you are our most important constituent...and your voice can only be heard if you join.

If you do nothing else today...please join Hopeful Parents!

I believe you chose to be here.

I believe your soul knew what it was getting itself into.

I believe there is more going on here than I presently understand.

I know how guided you are.

I know you.

I know how worthy of a good life you are.

I know what a wonderful adventure this is for you.

I know how fun you are.

I know the contrast we face together propels us forward into an experience of joy, the likes of which "normal" can't fathom.  

I will try my damnedest to never make you responsible for my happiness or unhappiness.

When I fail I will apologize. 

I trust you to find your way.

I let go my white knuckle grip.

I honor the wisdom of your soul.

I am so very glad you are here.

So glad you are my child.

Michelle O’Neil has contributed to A Cup of Comfort for Parents of Children with Autism, and Special Gifts: Women Writers on the Heartache, the Happiness and the Hope of Raising a Special Needs Child. She has written for Literary Mama, The Imperfect Parent, Age of Autism, Cool Cleveland and Sensory Integration Special Interest Section (SISIS) Quarterly Newsletter, a professional publication for occupational therapists. 

Her ten year old daughter has Asperger’s. 

• No doesn’t always mean no; sometimes, if you whine enough or throw a hissy fit, you just might get what you ask for.  While that sometimes works for my nonverbal son, it’s better if you “use your words” —especially if you are an adult.

• Just because you can’t yet do something doesn’t mean you never will.  This applies whether you are six or forty-six.

• A genuine smile and hearty laugh can win over even the most curmudgeonly of individuals.  So can showing genuine appreciation for those same people.

• People remember the innate goodness of genuinely good people.  People in positions of authority remember these same good people and are sometimes willing to go out of their way to help them— even if their parents might be a tad pushy. (What? It’s for a good cause!)

• Sometimes, a gentle nudge isn’t as effective as a full-fledged shove— as long as no one gets hurt.

• “Why not?” is a very valid question.   “Because those are the rules” is a very stupid answer.

• Keeping up with the class isn’t as important as learning the same lessons.  There are many paths to the same destination.

• Gym class can be fun.  Even for an out of shape forty-six year old who’s helping her son participate as fully as he can.

• Hard work is its own reward.  It is also exhausting.

• Hard work is much easier when you know someone believes, really believes in you.

• The thrill of victory can take many forms.  It is just as sweet whether it’s an Olympic medal or the satisfaction of watching your child blossom before your very eyes.

My Disappearance

The conversations in my mind

have grown too big, too intense

for the grocery aisle,

or the sandbox in the park.

I am mapping out miracles,

creative interactions,

scheduling brain scans, special meals

and blood work;

opening my door to therapists at seven am,

and pushing my true thoughts

deeply away.

My silence is trying to grasp

how to find time for a marriage

that has been placed in the wings

while my son’s life

is choreographed on center stage.

My silence holds possible dreams

of a normal life;

with family vacations, car trips,

and time not scheduled.

~Jennie Linthorst

A few months ago I spoke with a television producer who was planning a show on Prader-Willi syndrome, the rare genetic disorder that Oscar was born with nearly ten years ago.  She had just started her research and somehow found me in the blogosphere. We spoke for a while and she asked lots of insightful questions, but this one really stumped me.

What is the hardest thing about having a child with PWS?

When Oscar was born and I read all the scary literature that painted people with PWS as garbage-eating monsters, I was darn sure that keeping Oscar from stealing food out of the neighbors’ freezers and a dozen other equally unthinkable places would be the hardest part of PWS.  But as I learned more about the syndrome and gained confidence in how we would maintain a food secure environment, I started to be more concerned about behavior issues – the tantrums, inflexibility, anxiety, and perseveration – that I read about in online sharing groups for parents of older children.  Many families say that behavior is the most challenging aspect of PWS, harder even than securing the fridge with a bicycle lock and begging classroom teachers not to serve shamrock-shaped cookies on St. Patrick’s Day.

While food and behavior are definitely challenging parts of our family’s every day, if not every minute, they are not the hardest parts of PWS, not now, not for me. 

I’m not naïve. I recognize that our food and behavior issues could escalate at any minute to a point where I might change my tune.  But today, even when I caught Oscar, not two feet from me, covetously fingering the dry goods in his grandma’s pantry, I thought “Hmm, the food stuff might be ratcheting up a little”, but I didn’t dwell on how hard it is to constantly monitor him and his environment.  It’s just what we do.

I know this does not make for interesting television, but as we close in on ten full years of dealing with PWS the hardest thing is the incessant coordinating and communicating.  Compared to my two typical children, raising Oscar just requires so much more – more paperwork, more emails, more phone calls, more advocacy, more doctors, more therapists, more school meetings, and way more educating. As my poor friends have heard me repeat all summer long, there’s just a whole extra layer of stuff to deal with when you have a child with special needs.

Thankfully Oscar is oblivious to my anxiety over my (and, frankly, his) lack of preparation for the start of school.  He’s had a wonderful summer and I don’t regret any of the choices I’ve made.  His days were filled with swimming lessons, horseback riding, and zoo camp. He cemented his biking skills and worked on playground games so that perhaps he’ll have the confidence to join in during recess next year.  He loved his twice-weekly math sessions with the educational therapist and even happily did the homework.  He also had lots of precious unstructured time -- creating zoos with blocks to house his prized plastic animals, playing silly games with his siblings, and cheering on his brother’s baseball team.  The things we have done have all been worthwhile so why I am so bothered by what we haven’t done?

I think I’m struggling because I work so hard to set reasonable goals in the first place. I’m not trying to win parenting awards or turn Oscar into a Prader-Willi poster child (though Oscar is awfully handsome and would be happy to pose for a poster).  I prioritize family time and have told teachers that homework doesn’t always fit too well into Oscar’s schedule because he sleeps so much and we want to spend time with him too.  I postpone non-essential doctor appointments till more convenient times and I tell therapists that we just can’t follow all of their home program suggestions. I learned to say “no” when Oscar was little because if we did everything that might help Oscar it would be too much.  But some things must be done and so I prioritize them.  We do need to finalize the IEP, and Oscar really does need to learn to type.  I have to (and want to) set up that online sharing group.  And there are a dozen more carefully selected tasks that I really thought I could accomplish this summer, and didn’t.  It’s always been that way.  And, so, for ten years, despite all that I am doing, I still have a never-ending to-do list circling in my head. 

That is the hardest part of Prader-Willi syndrome, for me, right now.

Mary is adding blogging more frequently at Finding Joy in Simple Things to her list of priorities and hopes to see you there as well.