Hopeful Parents - Hopeful Parents

Friday

Sep032010

It's a crazy world I live in when I consider having a rare disease to be "lucky."

Friday, September 3, 2010 at 10:00AM

My son is alive. For this, I am grateful. Yes, we live with a rare disease, but compared to so many families we are lucky.

{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.

1 Comment | | in

Blog Posts,

Causes,

Janis Marie,

New Diagnosis

tagged

Children's Rare Disease Network,

Janis Marie,

PDD-NOS,

Vote 4 Hope,

autism,

branchiootorenal syndrome,

Thursday

Sep022010

Are we enough?

Heather Schichtel |

Thursday, September 2, 2010 at 9:11AM

My post last month was in a bit of a haze....two days after Samantha's memorial service. Our world had been turned upside down.

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

5 Comments |

Wednesday

Sep012010

Work/Life Balance for Family Caregivers

Lauren Agoratus |

Wednesday, September 1, 2010 at 3:52PM

It’s back-to-school, and for some lucky folks who get the summer off, back to work. When you’re the parent of a child with special needs, it’s hard to balance work and family life. (This includes all those school and doctor calls before or after work or during lunch hour.) But it can be done.

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)

1 Comment |

Wednesday

Sep012010

The System Teaches You to Be a Bitch

Lexi Rohner |

Wednesday, September 1, 2010 at 2:00PM

I had it out with our regional center coordinator. I finally lost my cool. But they were going to deny my son speech therapy and ‘require’ us to ‘access’ our insurance before they would continue to fund his services. I have been very compliant, patient and understanding thus far. But given the nature of the political and budget climates here in California, I could no longer say nothing.

I thought it over for a few days, and when I called her back, I had only one question. “Is the state and the early start program discriminatory?” She was silent for moment, then replied, “No, of course not.” How nice of her to hold the gate open for me. I charged ahead, barraging her with questions and barbs laden with attitude, anger and frustration about how the state has mismanaged my money. “Our money”, she corrected. About how my husband and I have paid into the tax system for collectively half a century and never asked for nor felt entitled to a penny. About how there are anchor babies and illegal immigrants living off the system unchecked while our legally entitled son is in danger of going without. I ranted to the point of tears until she said quietly, “I understand and I don’t hear anger in your voice, I hear pain.” That shut me up. She was right. I knew in my heart that I was feeling grief at the inability of my body to keep my triplets inside long enough to avoid the problems with which we now deal.

When I came to from that dizzying reflection however, I resolved that she would not distract me. While I am truly upset about the issues I just mentioned, my first priority is getting my son what he needs. I stopped crying and I told her just that, pointing out that we would under no circumstances be accessing our insurance. Then I asked her if I needed to go to the media or get an attorney to make this happen. Her response? “I encourage you to contact Sacramento. They need to hear stories like this.” Stories?? We are not a story. I informed her that I had not said ‘Sacramento’, and that Sacramento’s job is to get re-elected. My job is to get my son therapy. I told her I needed her and she WAS going to help me get this service. I was firm.

In the end I got what I wanted, but it left me feeling taxed and even more frustrated. I don’t like the way this feels. I didn’t access insurance, what I found myself accessing was the outwardly bitchiest side of me, borne from the inner most protective part of myself. Will it always be like this? How to reconcile my emotional response to my son’s disabilities with the logical and practicality required to actually help him? Is this what the system teaches us? To be a bitch, squeaky wheel, grease and all that? I don’t expect handouts in any manner. However, if my son needs more than we can give him, why should we need to fight for what is available to him while it is handed out elsewhere at the state’s whim? I am not interested in political games, office machinations and ‘directives from above’. If I wanted to hear, “Sorry, that’s our policy”, I would go to IKEA. There are hills I don’t want to die on. But this one? I think I am going faster uphill than I could have ever imagined.

10 Comments | | in

tagged

california budget crisis,

ikea,

Tuesday

Aug312010

Big Plans!

Christina Shaver |

Tuesday, August 31, 2010 at 8:06AM

Member Meeting In Los Angeles

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!