Hanging with Riley

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Riley loves food.  Dinner is his favorite and feeding him can be quite challenging while he laughs and writhes.  He rides his wheelchair much like a first timer aboard the mechanical bull at the local country bar.  By the time I got out the video he was much calmer but you get the idea.  Much of the meal lands on the kitchen wall and rains down on both of us.

Over the weekend Dad and Riley had lots of one on one time while little brother was on an overnight playdate.

Yesterday morning Riley woke vomiting and soon started with an unusual seizure.  For once I had the wherewithal to video.

Our lanai is bursting with blooms and strangely they fill me with melancholy.  The white butterfly orchid was delivered to my the morning of Riley's birth by the kindness of a distant friend.  Each time the buds return I remember the anguish John and I were suffering when they first arrived.

The red Cymbidium rarely shows shares its blooms with us.  Florida is certainly not the proper home for this beauty.  It is one of the few Cymbidiums we held on to after our move from Southern California.  It reminds me of the time in our marriage when we were full of hope and great plans.  I remember long lazy loving days in Santa Barbara when we had the time and energy to enjoy each other.

Yes, we are making progress in regaining some of that hope and joy in life.  It is a process and a difficult journey.  For now, I must turn my attention to Riley.  Thankfully, he seems to finally be keeping down a meal.

We are all special... 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

 

Reliving Zachary's moment: By Rebekah Aldridge, Guest Post

In 9 years of being a mother of a special needs son, I think I have heard most everything you can imagine.  From insults to injury and blessings to prayers.  So it kind of comes without saying that you develop a thicker skin than most.  Otherwise you would certainly be offended far too often than you would like.  

Zachary enjoys yachting with his mom with Freedom Waters Foundation, above.

Anyway, every parent deals with their "wound" in a different way.  I have chosen to see my situation as an opportunity to be my best (even though most days I do not feel like that).  It has been 9 years since Zachary suffered severe abuse at the hands of his biological father which has left him with permanent brain damage and left paralysis.  Even though my son is the victim of this abuse and I try not to be selfish about his situation, it has taken several years to try not to think about it.  Until Tuesday, I thought that this wound has long healed.  But I found out that not only is it still an open wound for me, but it is an ugly infected one that reared its ugly head this week.  This is not to express my opinion of Casey Anthony at all, I am not here to solicit your opinions either.  It is merely watching the outcome of her trial that has exposed my ugly, sore wound.  

See, I am from Orlando and my son was abused in Orlando.  We spent 52 days in PICU and most of those days he was in a coma.  It took nearly 3 years to put his father in jail for his crime (which to this day has never been admitted by him).  I faced many, many judgments from my family and friends by offering a plea deal as opposed to going through a trial.  It's a very long and boring story that leads up to that point, but the short and sweet of it is that I offered (through the State Attorney's office) a 5 years sentence in exchange for a guilty plea.  MANY people disagreed with my decision and thought that I was letting him off the hook far too easy for this life sentence that he served to my son.  I have since settled myself with my decision and moved on.  

I did not know that it was still a very sore subject until Tuesday.  Because there was also such a lack of physical evidence in my sons case, his father could have walked out of that court room, just as Casey Anthony soon will.  Again, I am not here to hear about her or others opinions about her but merely to share my wound process with you.  My reaction to the verdict was outrageous.  You would have thought that I was a member of little Caylee's family.  I had to go clear my head, and after much deliberation with God, I realized why it affected me so much.  This was my own little precious wound that no one has ever been able to see.  Like a little secret I have been hiding from the world under this strong woman facade.  It is never my goal for people to feel sorry for me in any way, my son is truly a blessing and he is a miracle child.  He survived what most children do not and has overcome so much in 9 years.  To get back on track, I thought these feelings were long behind me.  The reality of it is that they are not.  Since Tuesday, most of my family has called to say what a great decision I made 6 years ago. 

 "Good thing you chose to take the deal," "I was against you offering the deal, but I have changed my mind after today"... and other such things.  Which I am grateful for!  I have an amazing family, that has supported me and Zach through the most difficult of circumstances.  

My point to all of this is that even though I have developed this thick skin to most everything, there are still things that can send me to my knees in tears.  After all we have been through and the things I have seen and heard, you would think that nothing could faze me.  So now I am working on picking myself back up and learning to deal with this new feeling that has sent me reeling.  My mother said it best today when we were at lunch, she said "You have a huge scar.  Even though your wound has healed there will always be a scar.  Nothing will ever change that."  She is right, no matter what I do that scar is still there and I was completely blind-sided by what was festering underneath it until it was opened and exposed on Tuesday.  All I can ask for is prayer, that maybe with more time my scar will fade.  I can tell you that 9 years later I still feel the sting of the day that changed our whole life.  I would never trade one day of the life I share with my son, he is just awesome.  But I would ask that if you read this and you see someone with a child that has difficulties or "looks funny," try not to stare or say something ridiculous, because that person has probably suffered a great deal and a harsh word will not make them feel any better.  

I have developed a skill that I am not proud of since my sons accident and that skill is making people feel stupid while being super nice about it.  Today at Calistoga, a man (I assume that he must have been starving) cut in front of me and let the door slam in my face.  I had my 5 year old in one hand and my son in the other (by the way it is obvious that my son has disabilities, they are physical).  Then he turned to watch the door shut in my face.  I could have run in there and yelled at him, and called him was he truly was but instead I simply smiled at him and said "Here let me hold the door for you, I am sure you must be starving" and I walked away.  I did not give him a chance to talk back to me, because in my opinion his comment, even if it was an apology, would not have mattered. 

People are rude and there is nothing you or I can do about it, but maybe by sharing my experiences and Stacie's experiences people who read this blog could be less rude.  Yes these things really do happen, it sounds appalling but it's true.  Remember this, just because the child may not hear what you say under your breath, doesn't mean I can't.  Thanks for letting me sound off!

by Rebekah Aldridge  "Make the best decision you can with  the information you have at the time."

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/ 

Father's Day Cards All Around

The boys and I took advantage of an event with PIC while John was working very long hours.  Off to Hope Hospice in Fort Myers for pizza and art. 

Surely all of you are jealous that we spend our social time in a hospice conference room!  It is not exactly social since all of the other families attending spoke Spanish only, if they did speak English they were not going to share it with me.  No, not exactly the outings I envisioned with my children.  Nonetheless, I am grateful.  I do confess I may not make the trip again unless necessary before the evaporator is fixed on the jeep.  OK, I'm actually about to make it again and farther for Riley's PT and a wheelchair repair.  The boys made no complaints as the sweat dripped off them and a thunderstorm threatened to soak us all.  The relief of having someone capable feed Riley for just one meal motivated me to make the drive. 

As I ate quietly and watched the boys, I contemplated how important even these few moments are to me.  Without having these few moments of occasional respite somewhere beyond the parents spelling each other helps maintain sanity. 

Riley was so happy to be with Miss Debbie P. for awhile he laughed heartily for several minutes.  A group of FGCU students, belonging to P.A.T.C.H. (Project Art Therapy For Childrens Health, coaxed Ronan to take on a paint project.  "What shall we do?" asked Juan.  "A father's day card," Ronan answered.  Knowing he already had made a card for Daddy I was curious.  Soon it took shape and receiving some help from Maria he had a wheelchair placed prominently on his artwork.  "Riley needs some help with his card," Ronan explained. 

Quite the oversized card... so I leave you to fill in the missing letters.

Ronan is always looking out for his family.  Such a burden to carry for a six year old.  Yet, to Ronan it is not a burden, he is simply fulfilling his place in his family and does it joyfully.  There was no resentment, no frustration, no sadness that he had to fill this void for both his brother and his father.  I sensed only satisfaction from Ronan.  A few feet away Riley laughed again.

No, definitely not the family time I imagined for my future.  It has its sadness.  But we each find some gratification as well, I still have two magical boys and an amazing husband.

We are all special... by Stacie

Note: P.A.T.C.H. will consider events.  For more information contact Marisa at Meschrei@eagle.fgcu.edu.  I also have a few pamphlets to share.