Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

Detours

on September 5, 2012

Shortly after we learned of Joscelyn’s diagnosis of hemimegalencephaly, someone shared a beautiful poem with me by Emily Perl Kingsley called “Welcome to Holland“.

The idea behind the poem is that being the parent of a special needs child isn’t what one might have expected or wished for initially but it isn’t necessarily a terrible experience, either.

According to Ms. Kingsley, it’s akin to planning a trip to Italy and ending up in Holland instead.

I like the poem… but it does fail to mention one very important consequence of making this detour from Italy to Holland:

“Holland” is expensive!

Don’t get me wrong, “Italy” is expensive, too. The average cost of raising a child in America today is over $200,000 according to some sources (And that figure doesn’t include college!) but add to those costs, expenses like medical bills, therapy costs, orthotic and mobility aids, etc. and you quickly discover that the detour to “Holland” is a pricy one. To make matters worse, these additional costs can rarely be absorbed by simply having one or both parents work more since the nature of their child’s disability often requires at least one parent to provide full-time care of the child at home.

My husband, Pringleman and I (No, that’s not his real name! 🙂 To find out why I refer to him as “Pringleman”, you’ll have to read here.) Anyway, he and I are fortunate to have good health insurance. Not all special needs families do. Still, our insurance co-pay costs just for Joss’ physical, occupational and speech therapy visits are costing us hundreds of dollars extra per month.

You can imagine our relief then, when after the mailman has delivered yet ANOTHER hospital or medical bill with Joscelyn’s name on it, we’re able to deduct the amount of the bill from the YouCaring account we set up several months ago into which so many of you generously donated funds to help us through this time!

Our plan is to have Joscelyn continue going to physical, occupational and speech therapy four times a week until she has “caught up” developmentally with her peers. Right now, at 15 months of age, she is on the level of a 9-12 month old for speech and a 5-8 month old for motor skills. She is not yet crawling or walking and has a one-word vocabulary of “ma-ma”. Her physical therapists are helping her develop her gross motor skills for crawling and walking. The occupational therapists are teaching her to use her affected right hand (which is weaker than the left hand) for fine motor skills that foster independence such as eating, dressing herself, brushing her hair and teeth, etc. Her speech therapists are teaching her to talk, as well as to sign.  Though she is presently developmentally delayed, the therapists are confident that with diligent effort, we will see great gains in the coming months and years.

Here, you can see Joss is working with her physical therapist on a swing that helps her to develop balance. Each time the swing stops, Joscelyn must work to re-stabilize her body.

Joss on Balance Swing

Today in therapy, she was giving her hip muscles a workout and learning to reach for objects while kneeling:

Joss Working Hip Muscles

In addition to paying the hospital bills and covering the therapy co-pays, we’ve been using the funds from her YouCaring account (and other generous donations) to purchase the following books and toys to help us continue doing therapy with her at home:

1) Glenn Doman’s wonderful series of Gentle Revolution Books: “How to Teach Your Baby to Read“, “How to Teach Your Baby Math“, “What to do About Your Brain-Injured Child“, etc.

http://www.gentlerevolution.com/mm5/merchant.mvc

2) “Let’s Talk Together” and “Baby Babble” speech therapy aids from “Talking Child”:

http://www.talkingchild.com/

3) “Active Baby, Healthy Brain” by Margaret Sasse:

http://www.amazon.com/Active-Baby-Healthy-Brain-Development/dp/1615190066/ref=sr_1_1?s=books&ie=UTF8&qid=1346876519&sr=1-1&keywords=Margaret+Sasse

Several other items are on our “Wish List” for the coming weeks and months:

4) Chicco’s “Musical Roller” toy:

http://www.amazon.com/gp/product/B000BOKAYG/ref=ox_sc_act_title_3?ie=UTF8&smid=ATVPDKIKX0DER

5) Fisher-Price “See and Say: The Farmer Says

http://www.toysrus.com/product/index.jsp?productId=3384749

We’re always on the lookout for toys that encourage two-handed play and welcome any suggestions that you might have!

We are SO fortunate to have continued support from our friends, family and community! Several wonderful people are planning fundraisers for Joss in the months ahead and we are enormously grateful to all of them and to all of YOU who are participating in them!

1) Jennifer Cannon is a sweet”Thirty One” consultant who is generously donating ALL of her profits from this online party to Joss! To check out all of the fun, NEW “Thirty One” items for fall, go to this link: www.mythirtyone.com/jcannon0327 and click on “My Parties” and then the party for “Baby Joss”.

2) Debbie Hardaway is a thoughtful “It Works!” consultant who has put together a unique “Wrapathon” for Joss on Sunday, September 23rd at Crazy Gators in Eustis! The event features an “It Works!” special where you get a body wrap for $30.00 to tone, tighten and firm your curves! A portion of the wrap proceeds will go to to Joss and Debbie is offering free beverages and finger food for wrap clients in the Wrap Room.
The Crazy Gator will also be donating a portion of meal and beverage proceeds from dine in or carry out during 2-4pm to Joss and are offering food and drink specials from 2-4pm.
The Big Red Bus will also be present for donors to bank blood in Joscelyn’s name! (Don’t forget your photo ID!)
For more information about this event, contact Debbie Hardaway @ 352-267-2835

3) Our sweet friends at Family Martial Arts Center in Mount Dora are also having a benefit tournament for baby Joss on October 13th. You can register @ http://kickusa.com/. I LOVE that they’re advertising that 100% of the proceeds will go to help Baby Joss start her journey towards “TOTAL RECOVERY”! Amen to that! 🙂

We didn’t expect to end up in “Holland” but thanks to all of YOU, at least we can focus more on finding the tulips and Rembrandts and less on figuring out how to pay for the detour!

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2 responses to “Detours

  1. Andrea says:

    How can I find your facebook page? thanks.

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