Wear forgiveness like a crown

May we as Christians never forget to wear forgiveness like a crown...please click on link.

http://www.youtube.com/watch?v=gRiTPIepv-E

A Blessing to Special Needs parents

A Special Friend of mine sent this to me today. She, like me, knows what it is like to have a child faced with more...

Special Needs, Special Love
Hal Runkel, LMFT
During college, it was commonplace for me to enter into philosophical conversations about the nature of things. What is truth? What is beauty? What is love?
That last question was always a hot topic. Is love the stuff of romantic fantasies? Or does it only belong to the realm of religious devotion? Most importantly at the time--what does it mean to "like" a girl, and what does it mean to "love" her?
One of my philosophy professors stumbled upon us during one of these speculative conversations, and simply told a story.
He had known a man in his church, a man whose only wife died while giving birth to their only child. Their boy did not escape the tragic birth unscathed, either, unfortunately; it left him practically in a vegetative state. In one afternoon, this man's life-calling was cast: he would raise an incapacitated son as a widower. The man and son went on to live the rest of their long lives together, my professor explained. And then he showed us that he had been listening to our conversation the whole time.
"You wanna know what love is?" he asked. "Here's a man who, for the last forty years, has shaved two faces every morning."
I must confess, I really have no idea what it must be like to be the parent of a child with special needs. Sure, I've been around hundreds of kids with physical and mental disabilities, counseled families of such, but that doesn't mean I know the exhaustion of living with the daily dependencies (and nightly worries) of patiently raising a daughter with severe developmental delays, or stubbornly trying to connect to a son with autism.
Sure, I watched firsthand as my parents battled my brother's dyslexia and tragic head injuries, but that doesn't mean I know what it's like to watch my own child continuously struggle with reading, or stay up nights reading about head trauma and worrying about its effect on long-term life success.
And sure, I, unfortunately, even know the pain of watching my wife battle cancer. I know all too well the dilemma of struggling to handle the unknown future while dealing with the known, at times miserable, present. But I don't think for one minute that my experience this past year can tell me of the dilemmas parents must face while deciding upon treatment regimens and school schedules, or the horrible pain they must feel while holding little hands pricked with chemo IVs.
But many of you know these struggles. Many of you live these lives. And I thank you.
I thank you, special needs parents, for all the ways you band together with other parents facing similar struggles. The networks of parents banding together, whether it be because of their autistic children or their cancer-surviving kids, are an inspiration to us all. So many ScreamFree Parenting Groups are forming all over the country because people are recognizing the value of struggling together. Parents of kids with special needs have this awareness thrust upon them, but the rest of us sometimes try to cruise through life (and stumble through relationships) thinking that we're not supposed to struggle. For letting me watch and become continually aware of how I can benefit from others' support, I thank you.
I thank you, special needs parents, for your tireless attempts to wrestle with your own conflicting desires. On the one hand, you want the best possible support for your child in their battle, finding the best schools, the top techniques, and the latest research to justify special treatment. On the other hand, you strive to normalize your child and his surroundings, never allowing your child's special needs to rob them from the joys of "normal" life, nor excuse them from the painful lessons that life has for all of us. Those of us without special needs kids face this same internal battle, wanting to both protect our kids from life's dangers and yet expose our kids to life's lessons. For showing me how to fight this battle on both ends, equally holding up both protection and exposure as valuable, I thank you.
I thank you, special needs parents, for your enduring efforts to emotionally connect with your children, even when they cannot connect with you. So many of you, especially those whose children have autism or developmental delays, continue to put yourself in vulnerable positions, looking (and desperately hoping) for the slightest signs that your child can reciprocate your affection. While learning to never need your own emotions reciprocated to keep you going, you can appreciate those fleeting moments with a heartfelt gratitude that few of the rest of us can ever sense. We, instead, place ourselves in an endless chase, needing our children to appreciate us, respect us, or just acknowledge our efforts so that we can feel like good parents. For showing us all that it's what we do, regardless of what our kids do in return, that validates our parenting, I thank you.
In many ways, all of our kids have special needs, because all of our kids are unique individuals, with unique lessons to learn as they carve their unique paths through life. But so many families out there know what it means to have kids with real special needs, families whose daily experiences, and choices in response to those experiences, give the rest of us hope that life can still go on, hope can still ring true.
I guess what I'm really trying to say is thank you, special needs parents, for teaching me what love is.

MD Anderson Trip

One of my more recent status quotes on Facebook was, "Can a trip to the hospital be considered a mini-vaca?" And I guess it can. We always manage to have a really good time on our bi-monthly Houston trip to MD Anderson for Braydon's check up. And the best part....
All GOOD NEWS! Braydon's counts are perfect and he checked out just fine. Not that we didn't know this cancer stuff was all behind us....it's just good to hear!

We are blessed to have two children that travel well. Of course Braydon is the BEST traveler but it's all he knows. He has been jumping in cars for long trip to the hospital since he was TWO! Just put him on a movie and he is good to go. Here he is on the way down there watching some cartoons!

But Deacon has done surprisingly well. He slept most of the time but played with his toys in between naps. He only had a couple of fits! Here he is playing...

And as long as Jacoby has a Red Bull and some sunflower seeds, he is good to drive the whole time. Not to mention he doesn't like me to drive for reasons "unknown".

Of all the posts and updates I have done over the last 4 and 1/2 years, it has never occurred to me that I have never posted pics of the hospital. So, just in case you ever wondered....this is where we go every other month for treatment.

And the hotel we stay at is just across the street from MD Anderson and is actually part of the hospital. They are joined by a sky bridge. We stay at the Jesse H. Jones Rotary House International. It is for MD Anderson patients only.

The boys were glad to see the hotel room after being in the car all day...it only take Braydon about 2 seconds to tear up a hotel room bed.

And Deacon learns fast...

Since the hotel is conjoined with the hospital they are always having some form of entertainment for the cancer patients and their families to enjoy while not at the hospital for appts. Wednesday night they had the Harbor Light Choir from the Salvation Army there singing. They were WONDERFUL!!! We all thoroughly enjoyed their talent and inspiring stories. The Harbor Light Choir is made up of men who have previously or are currently recovering from Drug and Alcohol Abuse through the Salvation Army. They travel around singing and inspiring others through their testimony! It was a real treat!

While we were in Houston we couldn't resist trips to Whole Foods and Toys R Us....Braydon made some temporary friends while in TRU...While on the way home we always like to stop at Bucees. Little bit of everything there. It's great! Braydon could look around in there for hours!
So as you can see this was not just a boring trip to the hospital. God has blessed us with great results, a nice place to stay, and even some meaningful entertainment! We go back next month.....and we are a little excited about it!!!

Some mothers get more....

I have been blessed with two wonderful, beautiful, unique children. Anyone who knows us knows Braydon is an extra special child and I am not just saying that because he is mine. Braydon was diagnosed with cancer when he was two. He completed three and a half years of chemotherapy in April 2008. He is just amazing and brave and a MIRACLE! Never has his life been easy but it has always been beautiful. Not many 6 year olds have a testimony. It was through Braydon's illness that his parents were saved. God definitely brought us to it to bring us through it! We will forever stand on that fact.

I think part of me must have thought that once God healed Braydon and we completed chemotherapy that this would all be behind us and just a vague memory with an incredible story behind it. I honestly believed he would come out of this whole illness unscathed. We had been told and "warned" of all the possible side effects (some permanent) that the high doses of chemotherapy might cause. I just didn't see that happening to Braydon. We believed in the opposite for him and prayed for it daily.

I know God did not bring us this far and bring Braydon through cancer with such an amazing testimony and story for him to continue to struggle. Let me explain whats going on.

Braydon has Sensory Integration Dysfunction. Sensory Integration Dysfunction is a neurological disorder causing difficulties with processing information from the five senses (vision, auditory, touch, olfaction, and taste), the sense of movement (vestibular system), and/or the positional sense (proprioception). For those with SID, sensory information is sensed, but perceived abnormally. Unlike blindness or deafness, sensory information is received by people with SID; the difference is that information is processed by the brain in an unusual way that may cause distress or confusion. One of the possible causes of this disorder is lengthy hospitalizations. We have definitely had our share of those. Chemotherapy can also cause many of the symptoms of this disorder. Children with this disorder have lots of "symptoms" ranging from poor balance to chewing on inedible objects. On a checklist in the book I am reading about SID Braydon had 13 of the 15 symptoms.

Lots of times these can present like behavior problems (disobedience) but are truly out of the childs control. We are definitely having a hard time with Braydon right now but we are just trying to be patient with him and love him through this! It is so hard and really progressed at a difficult time for all of us. It seemed to get worse during my pregnancy with Deacon and has continued.

Braydon is in speech, occupational, and physical therapies now and has been for some time. He has shown some considerable improvement in lots of areas, but no improvement in others and even regression in some. Due to this his therapist along with his oncologist have suggested Nuero-Psych testing to test for a possible learning disability.

Please join our family in breaking off that diagnosis in the name of Jesus. We believe fully that God can heal him of any and all late term effects that his cancer and chemo have had on him. We hope you are believing and praying for the same.

I didn't know when I had children that I would be a mom to a special needs son. But instead of looking at it like a problem, I will choose to look at it like a blessing. Please read an amazing and all too familiar story.

SOME MOTHERS GET MORE
Written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more. Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome or a palette that didn’t close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small,suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler. As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this. You didn’t jump up and down in the motherhood line yelling, “Choose me, God! Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

News around our house....

This may not be headline news to anyone else but you always remember your first!!! YOUR FIRST GRAY HAIR.

(LOOK RIGHT IN THE MIDDLE OF MY HAIR!)

I can honestly say with all the stressful and tough times we through with Braydon, he never gave me a gray hair but Deacon has been here three months and I am going gray. That's the only place I can figure it came from. Everyone always says they are from kids right? Jacoby said to pull it and I said no and that it makes me look wiser! Oh well. I bet it won't be my last!

Jacoby and I started P90X this week. Today we finshed day 2 and already we are barely able to walk. I noticed it this morning when I got up at 3:30 am to feed Deacon. I was definetly wincing getting out of the bed! But if we stick to it we are guaranteed great results.

Deacon is finally doing better and sleeping so much better. There for a while he was waking up 3-5 times a night. Right now we are waking up twice a night. I can do twice a night just fine. He was wearing me smooth out for a while. He is growing so fast and getting a really cute personality.

Braydon is changing fast too. I've got a whole post on Braydon and the changes and challenges he is facing right now. I will try to do a full update on him in the next couple of days. One of his new loves is fishing and he and his Daddy had some major bonding time over a fishing trip last week. He had some really great catches and made some unforgettable memories.

Water Bloopers!

Today Braydon finished up his third year of swimming lessons. It was show off day and boy did he show off! More like show out! Or show ALL! As he went to dive off the diving board (he was too far back on it for one thing), he took off before the teacher was ready and she still had a hold of his shorts. The picture below was the end result! Head in the water, legs on the board, pants around the knees...in front of 30 people! He was such a good sport though. It didn't even phase him. He got right back up and tried again! Ah, memories!

A Day with the Ducks

WE WENT LOOKING FOR ADVENTURE ONE DAY THIS WEEK....WE FOUND SOME DUCKS SO WE WENT AND BOUGHT SOME BAGELS (THEY LOVED THEM!) AND SPENT QUITE A BIT OF TIME FEEDING THEM AND GETTING TO KNOW THEM! BRAYDON MADE A NEW FRIEND WHILE WE WERE THERE-SEE LAST PICTURE!

A Week of Great Loss

This has been a week of great loss for America....

Earlier this week Ed McMahon died at the age of 86. He was one of the greats in show business and a true broadcaster. If you are American, you know who Ed McMahon is and you don't think of him without hearing in your head, "And h-e-e-e-e-e-e-ere's Johnny!"

Today, two entertainment greats died. Farrah Fawcett, best known as an "Angel" lost a long and couragous battle with cancer today. Fawcett became a sensation in 1976 as one-third of the crime-fighting trio in "Charlie's Angels." A poster of her in a clingy, red swimsuit sold in the millions and her full, layered hairstyle became all the rage, with girls and women (and men) across America. But I would like the think she will be remembered best for her best role...a fighter! She fought cancer whole-heartedly and gave a good message to America.... "It's hard but it's worth the fight." She never believed for a minute that cancer would get the best of her. And I don't think it did. I think we saw the best of her over the last nine months.

Michael Jackson also passed away today at age 50. The once known "King of Pop" suffered a heart attack in his home. With Ed McMahan and Farrah Fawcett, you can only remember good. There were no scandels and rumors spread about them like with Michael. At times like these it is easy to recall and talk about all the "trouble" in Michael's life. Contraversy was constantly surrounding Michael since the 90's. But as decent human beings we need to remember Michael for the good that he was too. He was a musical and business genius and touched many peoples lives through his music. In respect for him and his family I pray this country has mercy for him and the life he lived, though troubled. We need to remember that for the most important years in his life he was at the hands of a merciless abuser. I know that weighed heavily on the person he was and became over the years.

More locally, Jeramie Smith of Sulphur Springs and father to Caleb Ryan Smith, who is still in Children's Hospital in critical condition due to a near drowning at the Sulphur Springs City Pool two weeks ago, died today. He appearently died in his sleep. The exact cause of death is unknown, but I have been told he had multiple health issues. Please keep all of these families in your prayers.

America is mourning tonight......

Pictures in the Park

My First Time

This is my first entry. It's simply just to say hello and that I am looking so forward to sharing the stories our family writes as we journey this life together. We are all about creating good times and persevering through the bad times so that we can testify what God can do in our lives!