The latest on Kaetlyn - by Christine

Below with her blessing, I share a letter from Kaetlyn's mom, Christine.  The letter is beautiful and very personal.  She is living another version of my reality, It makes us "sisters." 

"Stacie, I share this with you because I do believe we are "sisters" as only those of us that share this reality can truly understand what it is to live on the edge with our children on a daily basis. I know our trials our different, but yet in many ways the same... I am always more than happy to share our experiences with others out there who may be experiencing their own challenges so they too may know that they are not alone on this journey through the life of a special needs family. Please feel free to post with my blessing... I will keep in touch and let you know for sure the final plan once we see the orthopedic; at the very least I know we will be moving forward regardless with the hysterectomy. 

Love and Miss you Guys! 

Christine"

You may recall Kaet's story as shared in these posts: 

My Life's Reality

My Fragile Child

Womanhood Hit Her Like a Ton of Bricks

Letter from Christine dated January 16, 2012

Hope this email finds your family well! 

I am writing to let you know the latest on Kaetlyn's "womanhood" issues.

Our continuing saga of womanhood that began last May...it has been a roller coaster ride to say the least as we cannot get her cycles (or should I say lack of)under control. Even using the birth-control pills that have continuous hormone for 3 months, Kaet was and is still getting her period every 2 1/2 to 3 weeks and the days leading to it are horrendous!  - The crying and screaming are enough to make me nuts and nothing seems to help. Once she actually starts we are at least blessed with a few days of relief and happiness. 

Her gynecologist ran in to us in the parking lot of the therapy center back in November to see how things have been for Kaet. It was then that I told her all we have been going through...I wanted to give the pills and her cycles a chance as I know it can take some time to regulate, so I did not call her prior to this to let her know what we have been going through. She calmly let me know that we have other options and to come see her when we had time. I finally made the appointment after getting through her latest orthopedic surgery and recovery. It' hasn't even been a month since Christmas and Kaet has had to "cycles" ! Enough is enough...

We sat down today in her office and went over everything we have been though with the irregular cycles and the fact that we had to change spasticity meds because the ones she was on (and were excellent in controlling her spasticity) had contraindications with the use of birth control pills. We discussed changing to another type of pill, but yet again wouldn't we be in the same boat was my concern; isn't it highly likely that the effectiveness of the pill was possibly inhibited by all the other Meds she is on? This according to the Dr is a valid concern. 

Our next options were surgical: Thermal ablation (burning out the lining of the uterus) with tubal ligation (typing tubes; since we know Kaet will never be having children of her own free will) or hysterectomy (only removing the uterus). We weighed the pros and cons of each carefully and decided that the hysterectomy would be the most definitive as it is possible for the lining of the uterus to grow back after thermal ablation. Please know that I have been researching and contemplating both of these already and I have to say this is a SUPER TOUGH decision to make to have your child go through yet another surgery, but is it fair for her to have to go through the pain and discomfort of a period every 2-3 weeks either?

At this point in time my mind is made up that we will proceed with the hysterectomy and for now, we are taking her off the birth control since it is ineffective anyway, and this way we can get her back on her "good" spasticity meds. I did mention to the Dr that Kaet will most likely be facing another orthopedic surgery later this year to secure the other clavicle, so she suggested and her pediatrician (we saw her today for a physical) did too that we see about coordinating the surgeries so she only has to go through it one time and be all done...that is where I leave off, we will be seeing the ortho at the beginning of Feb for her follow up from the last surgery so I will see at that time if he is willing to do it the same time as the hysterectomy. 

I sure hope and pray this all comes together and works out in the end; I hate having to make these decisions in caring for Kaets needs,  but I don't know what else to do to to get my girl comfortable...It breaks my heart either way; seeing her miserable going through the pains of cycles or going through surgery to prevent them. I feel in my heart this is the best choice and that maybe Kaet can finally stop hurting in the long run. I will keep you posted as to our progresses...

Until then, I hope you and the family stay well ...and I am praying for another LONG stretch for Riley with his seizures! :)

Christine

Dear reader, I hope you understand the challenge faced by Kaetlyn's family in an effort to do the very best they can for Kaetlyn's welfare.  As special needs parents we face dilemma's that we could never have imagined as we prepared to welcome our precious child into the world.  Each child and situation is unique and we do not advocate one decision over another, but must each come to our own conclusions.  We share this so that others on our journey will not be alone and so that those just on the outside may understand a little of our experience.

We are all special... Stacie Wiesenbaugh

Stacie's Theory of Relativity

Stacie's Theory of Relativity.... 

R.espite

E.quals

L.oving

A.ll

T.hose

I.

V.alue

I.n

T.he

Y.ears... Me, my child, my family For a Moment in Time....

Respite is a moment in time, no matter how brief.

It is spending time with you and going back in the past to remember who you are.

It is spending time with a spouse and remembering why you got married or even said hello to them.... creating future memories.

It is holding on to a moment in time that is for you, even briefly, that reminds you of who you are (the person you were or thought you would be)...

It is living in a moment with those you love....

It is spending time with a child and forgetting the disability...

Respite is not about the hours in a day you have to take care of a child.  It is about the hours in life you are given and how you will spend those moments.  Respite is about spending time with the most important  or more importantly, share those moments with others....

This is 10 minutes of my life to post.,.... share with others... my respite.

Written by my Sweetheart

Different Dream Parenting: A Giveaway

Do you follow the Different Dream for My Child blog by Jolene Philo?  It is a wonderful special needs resource.  Now comes the book.  And I have one to share in a Giveaway!

Different Dream Parenting:
A Practical Guide to Raising a Child with Special Needs

Ms. Philo is kindly allowing Rileys-Smile to give away a copy of this invaluable resource.  I am so excited and ask that each parent/caregiver/family member of a child with disabilities to please enter my giveaway.

Excerpt

I Didn’t Sign Up for This, God!

Have you ever had one of those dreams where you can’t move? The car is racing toward the edge of a cliff and you can’t lift your foot to press the brake pedal. An attacker is breaking down the door to your house and you can’t raise your arm to dial 911. Your child is about to run in front of a truck and you can’t open your mouth to scream.

My bad dream became a reality in 1982. My husband and I stood beside our son’s isolette in the neonatal intensive care unit. An IV needle pierced Allen’s tiny arm, and angry red scars crisscrossed his chest. One end of his feeding tube hung on a pole beside his IV bag. The other end rose from the soft skin of his tummy. Pain etched his wide forehead and tugged at the corners of his perfect rosebud mouth.

More than anything, I wanted to reach out and take his hurt away. But I was trapped in a bad dream. Immobilized. Inadequate. Helpless. Though God had assigned me to love and care for this beautiful child, I could do nothing to minimize his pain. My thoughts were an inward scream. This isn’t what I signed up to do, God! I don’t want to be a helpless onlooker. I want to parent my child. How can I care for him? What can I do?

As the parent of a child with special needs, you’ve probably experienced the same sense of helplessness. Whether your child is critically or chronically ill, mentally or physically impaired, develop- mentally or behaviorally challenged, you want to do something. You want to ease your child’s pain, but you don’t know how. You want to help your child realize his or her full potential, but you don’t know where to begin. You want to ask God about your child’s suffering, but you don’t want to be condemned for questioning His wisdom. You want to believe God is with you, but you don’t know how to find Him.

You’re stuck in a bad dream. You can’t move. You can’t speak. You want someone to shake you awake and tell you everything will be okay. Instead, you wake up and must become the parent you never expected to be. You doubt that you’re up to the task. You’re worried about your child’s future. And you’re wondering, Does anyone understand what I’m experiencing?

The answer is yes, many parents understand your situation. In the United States,

•        10–15 percent of newborns, or 431,000 annually, spend time in neonatal intensive care according to the March of Dimes.

•        12 percent of children between ages 1 and 17 had medical conditions serious enough to require hospitalization between 2004 and 2006, the most recent years for which statistics are available at the Centers for Disease Control and Prevention.

•        13.6 percent of students between ages 6 and 21 were enrolled in some kind of special needs program according to the National Center for Educational Statistics. That’s 706,000 of our country’s school-aged children.

Lots of kids mean lots of parents, dads and moms who are valuable sources of information and advice. In this book, dozens of them share with you the wisdom they gained while parenting kids with special needs.

Support can also come from the surprising number of professionals who work with families of kids with special needs. These professionals—and the resources they’ve created—are available at hospitals, medical facilities, government agencies, private organizations, businesses, schools, churches, and more.

This book brings you advice from professionals around the country and provides information about national organizations and resources. It also gives tips about where to start searching for state and local resources. More often than not, your problem won’t be a lack of resources, but a lack of awareness of them or inability to access them.

Different Dream Parenting contains six sections: Diagnosis, Hospital Life, Juggling Two Worlds, Long-Term Care Conditions, Losing a Child, and Raising a Survivor. Each section is divided into four chapters. Three chapters address practical issues. The last chapter in each section addresses spiritual concerns.

Parents of kids with special needs often wrestle with prickly spiritual questions. I sure did. Sometimes I still do. So do all the parents interviewed in this book, and most of the professionals, too. Every day, we continue to ask questions about our kids’ lives and futures. Gradually, we learn more about how to trust God’s timing and wait for His answers.

As you read this book, please ask your faith questions. Read about how parents and professionals learned to ask questions, wait, and listen. Consider the answers they have discerned and their suggestions about how to find comfort and courage in God’s Word. When you are ready, try out their ideas about how to pray and use Scripture to hear God’s answers to your hard questions. The thirty-day prayer guides in appendix A are designed to help you engage in conversation with Him.

But even with prayer guides and Scripture to guide you, I know how hard it can be to trust the God who is allowing your child to suffer. So I won’t condemn you for asking prickly questions. Instead, I’ll encourage you, cry with you, and support you when your faith grows weak. When you can’t hang on a minute longer, I’ll hold you close until your strength and your faith return.

I hope this book helps you break out of your bad dream, wake up, and move forward with joy and confidence. I pray that the stories of parents and professionals in this book will give you hope and strength.

Most of all, I hope you discover the truth God has revealed to me and many other parents. Raising a child with special needs isn’t a bad dream. It’s just a different dream. And surprisingly, a different dream can be the best dream of all.

Taken from Different Dream Parenting, © 2011 by Jolene Philo. Used by permission of Discovery House Publishers, Box 3566, Grand Rapids,  MI 49501.  All rights reserved

Entry: Different Dream Parenting Book Giveaway

Please enter the comments below  and share your name and your preferred contact information.  You may also use the email button instead to the right of the page under "Stacie's & John's Links."  Should you be willing, I would love to hear a little about the child in your life along with your entry.  Multiple entries are welcome with additional comments.  Giveaway entries will be accepted through November 30th.  The winner will be determined by a drawing.... perhaps Riley will rummage around a hat for us to make the choice, I'll ask him.

The book is available at 10% off the retail price:

http://www.dhp.org/Products/UB913.aspx.

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A Long & Rainy Weekend

The boys had a long weekend.  We filled our time very well.  They even got to make an Arbonne sales call with me, my customer was so sweet to let me bring them along.

The house begins to look like Halloween with Ronan's homemade decorations.  When he was just old enough to hold a crayon, we would create homemade crafts and art to decorate for each holiday.  I am not creative so I usually turn to the internet for inspiration.  I was out for a little while and returned home to find John and the boys immersed in Halloween decorating activities.  Now, Ronan begins the process without prompting and creations I would never have imagined adorn our home.  Below is the first of the planned flying bat, ghost and jack-o-lantern.

Window stickies compliments of Miss Donna.

Lots of therapy for Riley to Dr. Steve Stohler's new chiropractic office location.  We are so fortunate to have Dr. Steve give his time and expertise to keeping Riley healthy.  One day soon I will share our introduction to Dr. Steve.  Then on to horseback riding at Naples Equestrian Challenge.  For the 3rd session in a row Riley performed beautifully, working hard without even being asked to push up and sit up, smiling all the while.  He does appear to perform better on the cooler, rainy days.  No pictures again... I was busy being Riley's sidewalker.

My mother has returned from up North.  We are all glad to have her back.  Ronan brought back another tradition the moment she returned... games.  We may all be a little gamed out after quite a bit of Monopoly Junior and Rummicub which he expects to play again this evening, I suspect the day will be full enough.  I'm glad he enjoys that time together:-)

Today he has Physical Therapy and later a school conference.

When I wonder where my time goes and how I accomplish not nearly as much as intended, I can look back and remember how these moments ate up my time.  I do need to get life on track.  But, all this care for Riley is invaluable to our future.  The healthier Riley is... the healthier our family is... it's worth every moment.  Admittedly though, I am quite challenged to put it all in perspective and time budgeted.

So, how do you all balance the needs of your special child with health care and educational needs which dominate the family life?

It is ADHD Awareness Week.  Here is a link to the current CHADD (Children and Adults with Attention Deficit Disorder) newsletter with helpful articles.

We are all special.. by Stacie Wiesenbaugh

Got Respite... Go Fly A Kite

We are so blessed to have respite now.. through the Partners In Care program we are able to request about 150 hours a year.  I had lined it up awhile back hoping John and I could dive together this past Saturday.  Diving, however, is out for John at the moment due to his ear infection.  So, Riley happily settled with Nurse Debbie, John, Ronan and I headed to a secluded beach off Lover's Key with our kite.

It never escapes us that we can never take family outings as other families do.  Riley is always left behind or the outings must revolve around Riley's needs.  But, we have a son who needs these adventures and off we went.  Discovering he was required to wade through a lagoon to arrive on the beach upset Ronan at first, but by the end of the day he was the first one charging in ignoring all the crabs and jumping fish.

We are all special... by Stacie Wiesenbaugh

Overfilled

http://blog.friendshipcircle.org/2011/09/14/11-special-needs-novels-that-will-touch-your-heart/Overfilled is how I feel emotionally and timewise.
There just is not enough of me to get to everything I want to do.

Riley's cold from Labor Day weekend just cannot be shaken.  Poor little thing really needs to get a good clean breathe.  This week he has been sent home from school and lost out on horseback riding.  PT was "messy" but he got through it.  Good thing we've got drugs:-) But they wear him out too.

Great big thank you to all who have signed up for Friday's event at Chico's!  If you don't hear from me personally to remind you (big oops if you don't), please contact me.

Sharing today because that's what I do and I just can't help myself

I have taken to devoting one post at the end of each month to share the very many special needs blog posts which speak to me... this one will not wait because she speaks to my today where my head is:
The Irritating Factor

Hero horses: Sarah Bombard won strength and confidence from Naples Equestrian Challenge

http://www.naplesnews.com/news/2011/sep/05/hero-horses-cerebral-palsy-victim-sarah-bombard-wo/

Sheryl Soukup of Naples Equestrian Challenge is in the business of changing lives

North Naples Journal

For the Love of Blogs started a group for Parenting Special Needs, hop on over and link your blog up.

11 Special Needs Novels That Will Touch Your Heart from The Friendship Circle.

We are all Special... by Stacie Wiesenbaugh

Take Away

The headlines of recent are too much to ignore, so a post must be written:

Md. mom who killed son agonized over school costs

Kensington tragedy blamed on MontCo school system

First, I strongly disagree with the decision made by the mother.  Her son could tell her how he felt; how he loved her; if he was in pain; if he was happy.  I know his pain by his cries.  I know his happiness by his smiles and noises.  She had more of a DIRECT relationship with her child than I will ever have, yet she felt it was not enough.  They referenced debt as a reason she took his life.  I would give everything I own for a moment where Riley could speak to me, or even smile (Riley's Smile) and know it was out of true joy and not a chemical response to all his drugs or even a fart that was funny (but that would be funny).  So in sum, I disagree with the choice she made.

Still, I know my husband and I have been there.  There are moments in time, too many moments where the decision she made would be the easy one.  My husband has prayed for the end of my son's pain, as have I, more than we care to or even can share.

I think in reading the article there are things that we can all take away from it, whether you have a disabled child or not...

1.)The first "what to take away from this"... Don't judge others.  If they are carrying "one pound of weight" or "1000 pounds of weight" everyone is different and over time, it all feels like 100,000,000 pounds.

2.) I saw she was a single mom.  While the article didn't go into her relationship with her parents, the $10,000 check in the mail was extraordinary.  I am blessed to have a mother who, while due to age cannot hold my child, loves him and supports him in MANY ways.   For many, even if support is there, it is not always enough...The second "what to take away from this"...A small act can go a long way...If you know of a parent of a special needs child, whether married or single, you can ask how they (the child or parent are doing)... This is support.  But, remember, don't judge... by society (and family) there is too much judgment in special needs kids and families.  Just ask how are you?  and listen.  Being shunned by part of society, is isolating.  Just listening is often a moment of respite/help.

3.) I had mentioned earlier about how her son could communicate and mine cannot.  I probably portrayed this as selfish.  It wasn't as much that as, honestly, jealously.  Regardless, my "thing to take away"... Appreciate what you have with the one you love, no matter what the occasion.... My husband had a "lost" father (drugs, jail, confused, alcohol, barely saw him as a child).  His dad  too took his life.  Still, after all these years my husband will share many moments he had with his dad.  They were VERY brief moments, during hard times for them both.  Still, good moments.  My third "what to take away from this" is hold on to the moments you have with those you love.

To summarize, she could no longer carry the weight of what she was facing.  She had support but was alone too much, perhaps?  Perhaps no one truly listened.  I/we will never know.  She felt she could not give her son enough.... what parent special needs or otherwise has not felt that way.

I am looking for an end to this post but cannot find one.  I guess my end to this post is that it is not my last.  The Barnhard family found their end.  My "end" will come when either "special needs" ceases to exist or when I can no longer champion the voices of those with special needs or those who care/love them.

We are all special... by Stacie Wiesenbaugh

http://www.thingsicantsay.com

 

My Life's Reality - Guest Post by Christine

I do not know what's come over me! Literally it hit me yesterday smack in the face as I was discussing getting Johnathan enrolled in school. 

My life became a life of sacrificing my own needs/wants for those of others.

I dreamed of teaching (helping kids); being able to give to those who would someday appreciate it. What have I settled for in a job? -  A bunch of “me, me, me” ungrateful women. There is no "reward" in the job I have; I have so much more to offer this world and will never be able to show it.

I dreamed one day I would watch my children grow and share with them all that I was unable to have growing up and the milestones of life. I have the means, but God has chosen for my girl to struggle through this life while I sit and watch my unappreciative sister’s lack of desire to nurture her child and open the world of opportunity to her.  It kills me to think of all Kaet could have achieved in her life if only she was born "whole". Why was she cheated? 

I would love some mother-daughter time, going shopping, to the salon or even a movie together; all impossible as Kaet gets tired and/or overstimulated easily.

Almost 15 and should be getting excited to learn to drive and for the independence of getting a driver's license. Kaet will always be dependent on others to get her where she needs to go, yet never be able to tell anyone :(

Why was she cheated all life has to offer? – Yes, I know “it is God’s plan and we are not to question, just accept”.  I try to always keep this in mind and pray to him for understanding. 

In the end she is my rock. When I am down I run to her and hold her in my arms and thank God I have her in my life. If she gives me this peace, then why do I hurt so? 

Being the mom of a special child sure does have its own reward, but it also wears you down when you feel so trapped and secluded from the rest of the world because of the limitations placed on them. 

Yes, I know that some say our special needs children are only trapped by their limitations if we let them be; easier said than done. All the work that it takes just to get to and from the necessary doctor/therapy appointments with these children is exhausting; then add in the full time job on top of it; I just don’t have that much left in me. 

We are not alone in this journey... It is okay to feel.  Christine

Note from Stacie:
Christine's words hit me hard... every word rings true for me and reading her words brought the tears back to me.  Unfortunately, no one really wants to know including our families and we must keep it to ourselves as best we can.  It is also quite difficult to function while we carry all this grief.  She reminds me why I attempt this little niche blog... there really are other parents out there feeling just like we do and doing everything to offer their child the happiest life possible.  We can support each other through the miracle of the internet.

"Accepting a bit of Insanity"  on KatsCafe.org also explores the depression special needs parents face.

http://30daysofautism.wordpress.com/2011/05/13/let-the-tears-come-dealing-with-grief-and-letting-go/ shares the difficult decisions made by a mom of a child with autism.

Here is another post regarding disability and grief... http://www.differentdream.com/2011/06/how-to-cope-handling-constant-subtle-grief/ 

One Father's Perspective...

This link to an article by Robert Rummel-Hudson is a valuable perspective on father's of special needs children.  John and I have discovered that there is certainly a misconception that special needs responsibilities fall exclusively to the mother.  My reality is that without John carrying just as much of this burden and in many ways more of it that I would not have survived to this day.

Would mommy do this?  Not this mommy.

Please share any stories of special needs fathers with my blog readers... I would love to share them.  Stacie

Regular moms versus special needs moms - parents speak up at One Place for Special Needs

I find really interesting information on LinkedIn's "Special Needs Group." This link came through just in time for Mother's Day:

Moms, a stranger walks among you. We look like regular moms, but we are the hybrid to your standard engine. Our child's disability altered us, enhanced us. Many words describe us: resilient, creative, protective, emboldened, sympathetic, fierce and determined. We are special needs moms. How do our lives stand apart from your own? Take a look under the hood and see for yourself.

by Dawn Villarreal, One Place for Special Needs

 

When we put out Regular moms vs Special needs moms, we invited other special needs parents to write their own take on how having a special needs child has changed their perspective on day to day living. You did not disappoint. These responses are more thoughtful than our light-hearted original and reflect just a little slice of our lives.

Some exuberant parents, eager to share, posted the piece on regular parenting sites. They got an earful from a few moms who felt it implied that their lives were easy. To those moms I say that our life experiences are the sum of who we are. A regular mom really is busy until something happens (e.g. medical hardship, taking care of a parent, financial troubles) that changes her perception.

As special needs parents we have been given extra challenges in our lives and have risen to that challenge. I have no doubt other mothers would do the same if put in that situation, although I hope they never have to. It is my hope that if you are a parent of a healthy, non-disabled child who is friends with a special needs parent, that you will take the time to better understand their world. We are not looking for sympathy but we do appreciate the support of your friendship one mom to another.

by Dawn Villarreal, One Place for Special Needs

Regular moms versus special needs moms - parents speak up at One Place for Special Needs

Is it Wrong?

2:45 AM

Special Needs Parents... find each other wandering the house with worry after 2 am in the morning.  Not much hope that either parent will find tomorrow productive.