Tag Archives: journey

Top Ten Self-Disclosures

My wife was playing with a post for tonight… Bit too technical for me (medical terms and all). I work in Information Technology so that is saying a lot… But I read one thing she wrote and decided to run with it… (LOL … keep on Running until the Devil knows you are gone… Country fans will get it…)…

She wrote:

In planning, our doctor notes that “complex Neurologic issues can cause unexpected results.”

That is the PERFECT note: To the point as it describes our life and the lives of many who read this post.

Riley’s Smile

Welcome to Riley’s Smile!

I see this new domain as an evolution from my beloved Rileys-Smile and I am very excited to see how this blog will continue to develop.

My little introduction….

Riley’s Smile is Blog by Stacie Wiesenbaugh, mother of a special needs child and inspired by Riley, a child with multiple disabilities. To have your child deprived of a bright future is devastating to all (the child, family, friends): emotionally, physically and financially. To many with a special needs child the words “Hope” and “Life” seem like an impossible reality. I am reaching out to those with or without direct experience with special needs. I am hoping to share the journey of challenges, and to share a bit of hope and our life… All defined by Riley’s Smile.

Riley's Smile

Looking back on my thoughts and purpose reflected in my very first post.

Riley’s Smile Needs A Blog

Today is March 23rd, 2011. I have thought about why this blog should be written for a long while now. Long enough… it’s time to actually blog!

No one should need to write this blog. No one should need to read this blog. But that is in a perfect world. I need to write it and others will need to read it. This is why… Riley and his/my family are a special needs family. Not everyone can understand all that being a special needs family my involve.

My primary intent is to share what it does mean to be special needs to those who are just outside of this experience but have a need to understand it. This is going to be a challenge for me. How do I share our experiences while not overwhelming myself and readers. Today, that is not a problem. I am the only “follower.” Hopefully this will change very soon. However, if it remains me as the only reader then I have a wonderful self-therapy to reflect upon.

Thank you for writing Stacie:-)

We are all special… by Stacie Wiesenbaugh

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/ 

Stumbo Family Story

Day Number Four

This is a reminder of the reason I blog.  This blog is not about bemoaning our situation.  It is intended to give those just on the outside of a special needs family a glimpse inside.  Hopefully, I may help give a little insight into what may be behind all that frustration, hopelessness and the closed door that they may be encountering with another special needs family.
Today it is time for Riley to return to school.  He recovers from illness so much faster than he used to, but it is still quite challenging.   He is not 100% and I am certain to hear in his report for the day that he was sleepy, snotty, coughed and was not himself.  He is being himself, just the self that is mostly reserved for home.
Today he needs to get back to activity and stimulation that I cannot provide.  Also, I need a few hours without him in my arms.  My left forearm aches from the weight of him.  I feel the rounding of my spine from hugging him to me.  A few hours rest before launching into the weekend with Riley will help it be a much more pleasant weekend for all of us.  Errands without Riley would be helpful as well.  None of this happened.  Received a call from school before 10 am while on the way to run errands; he’s running a fever and must go home.  Thankfully, Jamie and Alberto at the school are willing to load the wheelchair with good spirit each time I arrive without the ramp which allows me to handle it myself.  I am very grateful that they will take the time and energy and always with kindness and gentleness.  Riley has returned home and is resting a moment… not very quietly though, lol.  But then, he wouldn’t be Riley if it was quietly.  Even when he’s ill… he is still the sweetest child imaginable.
Still need to get in the laundry for those sheets of Riley’s.  Not one set today but two.  We have the hardest working washing machine to be found outside of a laundromat.
 Riley art work from ESE class above.

Thank you to those in our daily lives willing to spend a few moment on my blog.  It means a lot to me.  Today I am grateful to Maria at the pharmacy for the time to see what it is all about here at Riley’s Smile!  Thank you Maria.

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