Hands of Hope
All year long, families who are raising special needs children give tirelessly to those that they love. Without complaint the needs of others take over our daily lives putting the thought of ourselves on the back burner. Today the HOPE Network recognized many of these caregivers and offered them a day of pampering...to give their caring hands a day of rest.
The goal was to take the weight of our worries and temporarily put them behind us. For once we were to focus on ourselves. With the help of the community, we were offered manicures, pedicures, massages, makeovers, and we're treated to a wonderful brunch. Seventy women to told to go have at it...and we did!
Pat enjoyed a manicure while I started my day with a relaxing massage. I would have fallen right to sleep if I didn't need to be alert for the speech that I was giving midday. So I spent the time finding the words that I wanted to say while getting a knot worked out of my shoulder. After that I was talked into getting my eyebrows waxed for the first time ever. I have one word to say to that...OUCH!
even though I had practiced The testimony that I planned on giving, I was caught off guard as I teared up talking about the struggles my daughter endured the first few years of her life. end the end it made me more relateable to the audience and I managed to get a few chuckles and a big round of applause. Every attendant walked away with a copy of Sometimes the Wind Blows Sideways, and the offer was extended for each of them to write their own story for the sequel.
A big thank you goes out to Carissa Lagoe, Lori Sills, and everyone else involved in the Northside Baptist Church HOPE Network. They work year around to offer services for our children to enjoy that they might not otherwise be able to have access to. For more information on their programs please visit Northsideonline.com.
Mark your calendars
A special guest will be stopping by on May 5th as part of her blog tour. Author Jeanette Levellie will be debuting her newest title: Two Scoops of Grace with Chuckles on Top. I have had the privledge of an advanced PDF copy of the book for a review and you are all in for a treat. I can't give divulge too much now, but I can give you a brief bio on her to hold you over until her visit.
About the author:
A spunky pastor’s wife of thirty-plus years, Jeanette Levellie authors a bi-weekly humor/inspirational column, God is Bigger, a popular feature in the Paris Beacon News since 2001. She has published stories in Guideposts
anthologies, stories in Love is a Verb Devotional with Gary Chapman, articles in Christian and secular magazines, greeting card verses, and poems for calendars. She is also a prolific speaker for both Christian and secular groups, and loves to make people laugh while sharing her love for God and life.
Jeanette is the mother of two grown children, three grandchildren, and servant to four cats. She lives in Paris (not the French one), IL. with her husband, Kevin. Her hobbies include dining out, talking baby talk to her cats, avoiding housework, reading, and watching old classic movies.
Oh, and did I mention there will be two contests that you can enter to win? You won't want to miss this so mark your
So much to do, so little time
March is filled with all kinds of excitement. Geese are flying back from their winter migragtion, the chipmunks are once again romping around the yard, and the sun is shinning down with bright warm rays that evoke a sense of spring cleaning among us folks. There is so much to do and my personal calendar holds no exception to the business of the season.
This week my friend Lisa Buske and I will once again be traveling to our writer's critique group. It is always such a nice night out with a wonderful group of friends. This month I am bringing a special piece of work and I am very excited to be having it looked over by some great writers. Their input will help me in my final copy which is due in two weeks.
On Wednesday I will be coaching my team in the Battle of the Books. Since December the kids have been reading books, memorizing the title and author of each, and practicing the study questions and participating in mock battles. They have been working very hard. After our building battle medals will be awarded and the first place team will proceed to the district battle on March 28th. The Rockin' Readers are ready for the challenge !!
My focus will then be turning to my speaking engagement for the HOPE Network on March 28th. A spa day is being held in honor of mothers who are raising children with disabilities. (Yes, I get to speak and enjoy spa treatments...the best of both worlds!) I have been asked to talk about my experiences as a mother so I prepared my speech accordingly. Now I just need to do a run through to ensure that it fits into the time constraints. There will be approxiamtely 65 participants at the event, and each one will be going home with a copy of Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child.
At school the kids have been working on the character trait Fairness. I have been working with the Oswego Arise office to bring in a speaker to our assembly to talk to the entire student body on exactly what fairness is. It does not always mean treating everyone the same, it means to give everyone gets what they need. Our goal is to show the school examples of this so that they will come away with an understanding of why some people get certain things while others do not.
My calendar is also filled in with various appointments and two birthday parties before the months' end, but there is a light at the end of the tunnel because as March goes out like a lamb it will bring me into spring break and allow for some much needed time to relax.
I read an article today from the Huffington Post and felt compelled to share it. It is written by Maria Lin, who is raising a special needs child. Her candid account of what life is really like for the parents of these children was spot on. Here's what she has to say:
About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various
named disorders, including Ring 18 and the more well-known Trisomy 18 (which
affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1
in 40,000 Americans have Chromosome 18q-, which means that less than 7,800
Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental
issues. He has had heart surgery, kidney tract surgery, bronchoscopies and
endoscopies, slept with an oxygen tube, and has had dozens of medical tests and
sees numerous specialists. We've been in and out of hospitals and doctors'
offices since he was three months old. He also has severe developmental delays
and receives speech therapy, occupational therapy, physical therapy and
Raising a child with any disorder, condition or special need, is both a
blessing and a challenge. A challenge for the obvious reasons, and a blessing
because you don't know the depths of victory and joy until you see your child
overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself.
As a special needs parent, I often don't share my feelings on this aspect of my
life, even with my closest friends, so I decided to compile a list here with the
goal of building understanding (I was largely inspired by this beautiful post,
authored by another parent to a child with a chromosomal disorder). I don't
claim to speak for every special needs parent out there, but from the ones I
know, some of these are pretty universal. If I've missed any, please leave a
1. I am tired. Parenting is already an exhausting endeavor.
But parenting a special needs child takes things to another level of fatigue.
Even if I've gotten a good night's sleep, or have had some time off, there is a
level of emotional and physical tiredness that is always there, that simply
comes from the weight of tending to those needs. Hospital and doctors' visits
are not just a few times a year, they may be a few times a month. Therapies may
be daily. Paperwork and bills stack up, spare time is spent researching new
treatments, positioning him to sit a certain way, advocating for him in the
medical and educational system. This is not to mention the emotional toll of
raising a special needs child, since the peaks and valleys seem so much more
extreme for us. I am always appreciative of any amount of grace or help from
friends to make my life easier, no matter how small, from arranging plans around
my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say,
but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old
(like walk), I feel a pang of jealousy. It hurts when I see my son struggling so
hard to learn to do something that comes naturally to a typical kid, like
chewing or pointing. It can be hard to hear about the accomplishments of my
friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair."
Weirdly enough, I can even feel jealous of other special needs kids who seem to
have an easier time than Jacob, or who have certain disorders like Downs, or
autism, which are more mainstream and understood by the public, and seem to
offer more support and resources than Jacob's rare condition. It sounds petty,
and it doesn't diminish all my joy and pride in my son's accomplishments. But
often it's very hard for me to be around typical kids with him. Which leads me
to the next point...
3. I feel alone. It's lonely parenting a special needs
child. I can feel like an outsider around moms of typical kids. While I want to
be happy for them, I feel terrible hearing them brag about how their 2-year-old
has 100 words, or already knows their ABCs (or hey, even poops in the potty).
Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect
Kid). It's been a sanity saver to connect with other special
needs moms, with whom it's not uncomfortable or shocking to swap stories about
medications, feeding tubes, communication devices and therapies. Even within
this community, though, there is such variation in how every child is affected.
Only I understand Jacob's unique makeup and challenges. With this honor of
caring for him comes the solitude of the role. I often feel really lonely in
4. I wish you would stop saying, "retarded," "short bus," "as long as
it's healthy... " I know people usually don't mean to be rude by these
comments, and I probably made them myself before Jacob. But now whenever I hear
them, I feel a pang of hurt. Please stop saying these things. It's disrespectful
and hurtful to those who love and raise the kids you're mocking (not to mention
the kids themselves). As for the last comment, "as long as it's healthy," I hear
a lot of pregnant women say this. Don't get me wrong, I understand and share
their wishes for healthy babies in every birth, but it's become such a
thoughtless mantra during pregnancy that it can feel like a wish against what my
son is. "And what if it's not healthy?" I want to ask. (My response: you will be
OK. You and your child will still have a great, great life.)
5. I am human. I have been challenged and pushed beyond my
limits in raising my son. I've grown tremendously as a person, and developed a
soft heart and empathy for others in a way I never would have without him. But
I'm just like the next mom in some ways. Sometimes I get cranky, my son
irritates me, and sometimes I just want to flee to the spa or go shopping (and,
um, I often do). I still have dreams and aspirations of my own. I travel, dance,
am working on a novel, love good food, talk about dating. I watch Mad
Men, and like a good cashmere sweater. Sometimes it's nice to escape and
talk about all these other things. And if it seems that the rest of my life is
all I talk about sometimes, it's because it can be hard to talk about my son.
Which leads me to the final point...
6. I want to talk about my son/It's hard to talk about about
son. My son is the most awe-inspiring thing to happen to my life. Some
days I want to shout from the top of the Empire State Building how funny and
cute he is, or how he accomplished something in school (he was recently voted
class president!). Sometimes, when I'm having a rough day, or have been made
aware of yet another health or developmental issue, I might not say much. I
don't often share with others, even close friends and family, the depths of what
I go through when it comes to Jacob. But it doesn't mean that I don't want to
learn how to share our life with others. One thing I always appreciate is
whenever people ask me a more specific question about my son, like "How did
Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than
a more generalized "How's Jacob?" which can make me feel so overwhelmed that I
usually just respond, "Good." Starting with the small things gives me a chance
to start sharing. And if I'm not sharing, don't think that there isn't a lot
going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family
that valued performance and perfection above all else, and unconsciously I'd
come to judge myself and others through this lens. Nothing breaks this lens more
than having a sweet, innocent child who is born with impairments that make
ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or
adult, special needs or not) exactly where he or she is -- no matter how they
stack up against what "should be." Raising a special needs child shatters all
the "should bes" that we idolize and build our lives around, and puts something
else at the core: love and understanding. So maybe that leads me to the last
thing you don't know about a special needs parent... I may have it tough, but in
many ways I feel really blessed.
Follow Maria Lin on Twitter: www.twitter.com/marialinnyc
Here is the link to the article for further reference:
Look who won a book !
Congratulations to Patricia Mott for winning a copy of Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child.
Pat was at the Sacred Heart Church craft show this
morning working her own booth selling handcrafted wood, gifts, and collectibles, but took a moment away from her own table and entered into a raffle to try and win a copy of the book. She was so excited when she won...YEAH Pat !
At the crack of dawn this morning I rolled out of bed after very little sleep and packed up my car for the trek up to Cicero. Of course Mother Nature chose the one day that I had to drive somewhere to sprinkle the world with white dust, but I braved the bitter snow and spent an hour setting up the table getting ready for the day. Books were on display, brochures available to let people know how they can submit stories to the next book, and a sign up sheet out out for speaking engagements.
Thanks to my friend Lisa Buske, the day went by fast as conversation passed between us as we worked, planned, and discussed our writing. It seems like the work of an author & speaker are never done ! Tomorrow Lisa will be at the Port City Assembly of God, giving a testimony of hope - It's possible to get through the tough times. She is a phenominal speaker and if you get a chance you should stop by and listen to her presentation.
As Disability Awareness Month continues I will be focusing on my own speaking engagement for the H.O.P.E. Network on March 28th at the Northside Baptist in Liverpool. They offer support to families of special needs children and I will be talking about my experiences in raising a child with a disability. Every person going to the event that day will be receiving a copy of Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child. I can't wait to meet all of the other parents and learn what makes th
Disability Awareness Month
It's Disability Awareness Month... what category does your loved one fit into? Not all disabilities can be defined by a single label. Many overlap while others simply do not fit into a label at all. We are all unique, with our own story. Let's unite and show the world just how amazing we really are!
How Can You Show The World Just How Special People With Disabilities Are?
By writing, of course!
I am now taking submission for the next book and am hoping to expand on not only the different aspects of disabilities, but also the range of emotions that go with it. Here are some examples of what your story could include:
Everyday stories are fun to read. Zero in on a small moment in your life and build the details from there. These can be written from anyone's persepctive: Family, friends, co-workers, teachers/coach, and especially from the individual themselves.
Submissions can be emailed to me at WindingRoadBook@aol.com
What does this distinguished group of people have in common? They all came out to help celebrate the part that they took in spreading disability awareness. As contributing authors to the book Sometimes The Wind Blows Sideways: Our Lives with a Special Needs Child, each of these individuals offered a unique perspective on how a disability has touched a loved one in their lives. The gathering came just in time to kick off Disability Awareness Month and was held at the Oswego Arise office.
How often do you get a group of writers from the same book together in one room? I took full advantage of it and had everyone there pen me their John Hancock on the page where their story appeared. While not every author could attend this event, I am pleased that I was able to get as many signatures as I could.
Dinner, laughs, and good conversation:
The evening went by quickly as conversations passed among us. After our meal we all gathered for a photo shoot before retreating back to our lives. Once back home I got a nice surprise when I found out that the book was being sold at Barnes & Noble! I pasted a copy of the link below for anyone who wishes to purchase a book. A little birdie also told me to be watching out for a write up in the newspaper about our evening so I'll keep you post
Where To Pick Up a Copy:
Barnes & Noble.com:
River's End Bookstore: Oswego, NY
Happy Birthday Dr. Seuss
Today's the day....a day so grand
That we say happy birthday
To a wonderful man
He gave us words
He gave us rhymes
We'll be reading him
Until the end of time
The Cat In The Hat
Hop On Pop
On Mulberry Street
The stories just won't stop
So let's take a moment
To go out of our way
To officially read
On Reach Across America Day
The following is a curtousy of www.seussville.com:
READ ACROSS AMERICA
"You're never too old, too wacky, too wild, to pick up a book and read to a child."
What better way to celebrate Dr. Seuss's birthday than reading to a child? On the evening of March 2nd (Dr. Seuss's birthday), Random House and the National Education Association (NEA) urge you to participate in the second annual Read Across America and read to a child. WHY CELEBRATE DR. SEUSS?
Dr. Seuss epitomizes a love of children and learning. Also, his use of rhyme makes his books an effective tool for teaching young children the basic skills they need to be successful. When we celebrate Dr. Seuss and reading, we send a clear message to America's children that reading is fun and important.
Today our entire district will be celebrating Dr. Suess's birthday. Everyone will wear orange in honor of the release of the movie The Lorax, and The Cat In The Hat himself will be popping into classroom to guest read to our kids. At 2:45 the whole school will partner up and buddy read together out in the halls. There will be prizes and snacks for all. But the best part is showing our littlest of folks that reading can be f
Who will you read to today?
I have the privilege of being able to shape the minds and lives of children who are battling disabilities. It can be very trying at times, but more often than not it is very rewarding. As a mother of a child with a disability, I know the struggles that they go through on a daily basis. This allows me to have a little more compassion for the people that I work with.