Reading Stephanie Nielson’s book Heaven is Here has reminded me of Heaven to say the very least.  At the very most, I have to say…well, I can’t say enough.

It’s to my generation of present day Mother’s what the Washing Machine and Dishwasher was for Mother’s and Homemakers back when Sear’s first sold them.

It is SO needed!

We are witnessing a true Mother fulfill her Divine calling as she brings us along with her.

I love and honor her.

Her book should be a must read for every person who thinks they will fall in love one day and have children and even those who want to, and those who already have and those who aren’t sure yet what they want or what they have.

It’s truly incredible.

You’ll cry.

You’ll giggle.

You’ll laugh.

You’ll feel grateful.

You will want to love your loved ones more.

Any generation would be blessed for having a mother who read this book and even more so for having a husband who read the book to his wife.

I like it a lot.

“There is in every true woman’s heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity, but which kindles up and beams and blazes in the dark hour of adversity.”
-Washington Irving

Stephanie relates that at some point she was given a choice to stay in “that beautiful place where I spent time with Nana”  and be released from her physical body or go back to earth.  I know that Daniel was given that choice when I prayed to Heavenly Father as they were rushing me from the L&D room to the O.R. room. I told Heavenly Father that I wanted Him to know that I wanted to be Daniel’s mother here and now and that I wanted him to live.  Daniel communicates everyday that he is happy to be alive no matter what he is up against as though he is conscious that he made the choice to be here no matter the adversity.  So grateful he did and I know Stephanie’s family is grateful she did too as are many others who follow her blog.

So glad to be Daniel's mom... he makes me smile and giggle, and he makes my heart melt.

Daniel at his new PT (Physical Therapy) location.  He is trying to jump through rungs of a ladder.

Apparently he is also a good soccer player for a kid with CP- he stops the ball with his foot but falls over as he struggles with balance, but he’s a great sport and gets back up and tries to give a thumbs up with his cute but spastic fingers to indicate that he’s fine, then he kicks the ball through the goal as hard as he can.

The hospital system where Daniel was born has so many parents filing complaints against them.  Maybe that’s why they didn’t even know that Daniel has been getting ‘professional’ therapies since he was 13 months old.  I feel for the other parents, one who went home with her limbs amputated after giving birth from contracting a bacteria that would kill her if they didn’t amputate.  I think moms are getting fed up with the dangers of hospital births as I have seen more and more information streaming through cyber space on better options than pitocin and epidurals.   Giving birth is indeed dangerous, but then adding to it by having a brand new nurse fresh out of training, assigned to a reckless doctor (who’s history this hospital new about) is certainly not the answer as in Daniel’s case.   This has been a difficult journey and 5 years into it, I can say that:

Daniel is an incredible, handsome (Just ask the receptionist at All in Physical Therapy), gorgeous, smart, loving and lively miracle who is guarded and loved with all of our hearts.
We are blessed.
We are lucky.
We are loved.
Life can be brutal when you have to face corporate coldness and indifference.

To all those parents who ‘trusted’ the hospital- you did not do anything wrong.

Just keep sharing so our daughters will one day be safer and our grandchildren unharmed as many women are coming full circle in what it means to give birth.

Zachary Fenell has CP.  He is now 24 years old, obviously a little older than he is in the cute photo below.  From a press release: “Ironically Fenell’s cerebral palsy helped lead him to pursue a writing career. He sees writing as an opportunity to educate others and increase disability awareness. In the past Zachary has published disability related articles on websites such as i Live with a Disability and Yahoo! Voices. “

I am so happy Zach agreed to author a guest post on my blog!  He is inspiring to me and so many others!

Sarah does a thorough job here at Walk Daniel Walk Daniel to look into parenting a young child with cerebral palsy but today I wish to ask you to fast forward 10 or 12 years so your loveable child now resembles a moody teenager.  Sorry, I know time moves fast enough as is but please play along.

The teenage years prove tough for everyone involved.  You probably recall your own struggles with these awkward years where bodies change and independence becomes an extremely valuable asset.  I’m not a parent (too young in my own mind at 24) but I’m sure the moodiness which accompanies changing bodies and the consequential pushing away related to your child seeking more independence stresses and frustrates.
Add your child’s cerebral palsy into the mix and the stress and frustration only increases.  I focus on teen life with cerebral palsy in my book Off Balanced, currently available for the Amazon Kindle and Barnes & Noble Nook. Off Balanced serves as my teenage memoir, exploring how having a mild case of cerebral palsy affected me socially as a teen.

The following passage from my memoir demonstrates the extra difficulty CP brings to teen life:
“As time passes and you become a teenager life only gets harder. The onset of the teenage years becomes plagued with awkwardness for everyone. Bodies change. Voices crack. Braces and training bras create self-consciousness. Sex, alcohol, and drug peer pressures increase. Resisting such peer pressures becomes feared because you don’t want the ‘un-cool’ label. Everything combined creates an emotional volcano set to explode anytime.
For individuals with cerebral palsy, the emotional volcano proves even more volatile. Assistive technology, like canes and wheelchairs, as well as awkward gait and poor posture adds to your self-consciousness. Physical limitations destroy your ability to serve as the ideal boyfriend or girlfriend. You add self-pressure to peer pressure, thinking ‘If I drink this beer or smoke this cigarette maybe I won’t be thought of as the handicap kid anymore.’ Parents can add to your emotional volcano’s instability with their overprotective concerns. They mean well but their intentions translate to irritation and a restricted lifestyle.”
When writing Off Balanced I geared my tone and style to engage current teenagers but I sincerely believe parents will find the book intriguing. In fact I think the choice in tone and style could greatly benefit parents of teenagers with cerebral palsy as the book can help provide a look into what your child might go through. Taking the time to understand your teenager should go a long way in cultivating a healthy parent-child relationship during the trying teen years. As the paragraph below from Off Balanced displays, cerebral palsy can blindside a kid from appreciating his parents’ concerns.
“At home my awkwardness and fear gave way to anger. Having a few friends allowed me to sample an ordinary teenage social life. While my actions in school didn’t show this I grew hungry for more. Consequently my parents transformed into villainous characters. I still believed blending in with everyone else gave me the best opportunity to enjoy an average teen life. My parents threatened this chance by continuously seeking new cerebral palsy treatment options. Unlike most evil doers, Mom and Dad acted with good intentions but concern with becoming even more different prevented me from appreciating their caring attitudes.”

In addition to my parents’ consistent search for new cerebral palsy treatments, their recommended safety precautions irritated me. For example despite my ability to use stairs with rails, my mother and father insisted I take the elevator at school.  After all, “better safe than sorry.”  This mindset aggravated me causing me to think “You don’t get it because you don’t have cerebral palsy.”  What I failed to realize at the time and what I believe you should tell your kids in order to avoid any disdain is “Hey, We haven’t exactly raised a kid with CP before so this is all new terrain to us.”  I sincerely believe mutual respect over the situation’s delicacy will go a long way to keeping everyone satisfied.

You can find Zach’s new book here & here.

Learn more about Zach Fennell here & here.

I will take Zach’s experience and remember not to bug my son too much as he is gaining his sense of independence.  I’ll tell him, “I love you.  If you need me, I’m here” instead of what I said the other day to my husband as he was taking Daniel out… “Don’t you dare let him fall and hit his head.”  I guess I can learn much from Zach… we all can.  Thank you Zach!

If I were to meet the mother of a child who was injured during birth and she told me she wasn’t getting her child therapies I would strongly encourage her to get her child into professional therapies by the time he or she was 1 year old.   I don’t think I will ever meet this mother, thankfully, since doctors strongly encourage parents of injured children to get them into needed therapies.  The sooner the better for children like Daniel who have been injured by the reckless administration of Pitocin, and their families.

It takes a lot to get your child what he or she needs.  First you have to go through the red tape of doctors and paperwork and insurance.  You have to find the right place for your child and if you are in Orlando or the surrounding area, the right place most likely isn’t taking on new patients or something like that.  That’s been my experience.  But once you get through all of that and bring your child in for his or her first session, things seem to start feeling less overwhelming and more productive.  You feel thankful that there are indeed professionals who can look at your child and see what you did not know how to put into words.  They can pinpoint exactly where your child’s body is holding back and begin working with your child to teach them to overcome it.   It just does not come natural for most parents (me for instance) to know how to help their child learn to walk or pick something up or form words when it comes to the effects of Cerebral Palsy.

When Daniel was a year old, I took him to therapy sessions every week for Speech, Occupational, and Physical Therapy.  Shortly after Daniel started therapies, my husband had to leave and work out of state for the summer.  I had to develop some new muscles that summer along with Daniel.  Muscles built on absolute commitment that Daniel was not going to be trapped in his body.  I just knew to keep following my hearts desire for Daniel.  I believe that with hard work and faith in a God that knows each one of our names and has designed a plan for happiness, miraculous results will follow, and I have experienced them.  You can’t pay for the kind of miracles that we wanted for Daniel but you can pray for them and work for them.

I knew that if I showed up on time to a therapy appointment, something great would come of it.  I had 2 other small children (still do, but not as small now) and we were financially ruined.  Sheer commitment and determination were my oxygen and luckily the Lord sent me a friend that just so happened to need help with babysitting her child.  Was it just coincidence that the very summer my husband could not be there to watch the kids this friend’s schedule coincided just enough that I could watch her child in the morning and at the very time I needed someone to watch mine, she was able to get back to my place to let me leave for sessions with Daniel?  Just one of many examples of Heavenly Father helping 2 moms meet 2 very important needs for their families.  Stephanie, you know who you are and you are one of those moms who has suffered loss but through that loss your faith developed an even greater commitment and strength towards your family.

“Therapies help the body stay loose, flexible, and moveable.  Now Daniel gallops around, crookedly, but happily.”

Speech Therapy encouraged Daniel to talk when his mouth muscles didn’t want to.  The therapist taught me what exercises to do on Daniel’s mouth to warm them up and condition them so they weren’t so resistant if he wanted to mimic a word.  She taught him sign language so he could use gestures to communicate which also encouraged his desire to communicate even more.  She played games that required him to communicate in order to get a toy to work and other activities that promoted the desire and ability to speak and be understood.

Occupational Therapy literally taught Daniel how to use his rigid hands and body to manipulate objects as well as communicate effectively if he needed help.    Still Daniel would literally bang his head against a wall when he just couldn’t take the frustration that his body would give him when his mind knew how simple his desire was.  He might head bang today if we weren’t there supporting him in the unique ways he needs because no matter how much therapy, his body will always have to work 10 times harder to overcome the simplest things.

Physical Therapy helped Daniel consciously learn how to move his body so he could eventually walk.  Cerebral Palsy makes the body want to curl up and not move.  Therapies help the body stay loose, flexible, and moveable.  Now Daniel gallops around, crookedly, but happily.

I can’t ever stress enough how integral it is to get a child into therapies early on for the parents sake too.  During these therapies, you can learn a lot from the therapists about your child’s needs and how to meet them.  They will be the most important source of support after a child gets injured, even more than other family members since they will give you and your child actual skills with confidence naturally following to move forward in ways that solve difficulties you won’t even see coming.  It will be your full-time job.  It will feel like baby steps most days but progress is the key and is so important.

As your baby grows during therapies he or she won’t develop permanent movements that work against their body’s ability to do something effectively and will prevent muscle atrophy, injury, and other stuff that will be 10 times harder to overcome.  Can you imagine if we had waited until Daniel was 2 or 3 to start therapies?  He’s a big boy!  Mine and Brian’s back have gone out many-a-time.  Just this past November and December Brian’s back was out a few times… he walked around like a bent over elderly man for days.  His ability to bring in a healthy income requires physical health and stamina.  He has been visiting the chiropractor several times a week with Daniel.  Something they enjoy doing as ‘daddy time’.

I don’t know how to put into words all the little positive nuances that therapies brought to Daniel’s daily life, each progression allowed him to make another that could only follow the last.  The time, work, and focus professionals have given in his first years of life after his tragic birth injury are responsible for his abilities today.  However, Daniel will always be working to keep up with his body’s growing demands.

Positives of Therapy:

Support – Going away from a session with actual skills you and your child can apply immediately for better quality of life.

Knowledge – You will recognize more accurately where your child struggles and know what to do to help him or her so worry, stress, fear, anxiety, hopelessness are abated and replaced by the ability to parent your child according to their extra special needs.

Skills – You and your child will enjoy the learning process that will allow your child to progress and overcome so many problems and prevent future problems.

Progress – You and your child will feel joy and hope as you watch your child progress and be happier and healthier.

I learn so much when I take Daniel to a therapy session, or to a good doctor.

Other therapies that help Daniel tremendously are Hippotherapy and we are anxiously working towards getting him Aqua Therapy which will work muscles in his body that he otherwise can’t use due the weakness Cerebral Palsy creates.  I am so hopeful for Daniel.  He is such a warrior with a pure and meek heart.

Here are a few exercises that I have Daniel do at home along with 3 chiropractic sessions per week as prevention for scoliosis.

Pilates Pulling The Straps & Rolling Like A Ball

I am not a medical professional. I do not recommend doing these without clearance from a medical professional or physical therapist.  Every Child is affected by Cerebral Palsy differently.  Not every exercise is suitable for everybody.

Forehead down

plank position, feet stay together pressing on mat

arms come around to the back

“Pulling the Straps”

back down to plank position

pulling the straps again with arms to side

“put your feet down on the mat Daniel”

plank position, hands under shoulders

“look forward Daniel, and push all the way up”

rolling like a ball

point toes, tuck head in, balance on coccyx bone, and roll like a ball to shoulders, not neck, and try to come back up!

“I know it’s fun but try to keep your head tucked in Daniel”

“back up and again!”

“all by yourself!”

“Good work sweetie boy!”

Scoliosis will occur because Daniel’s muscles are too weak from the effects of being deprived of oxygen during his birth, to support his ever growing spine… believe me he is probably going to be 6’6″ especially since I feed him these super nutrients. I am excited about getting Daniel this new product from them:

The hospital we planned on giving birth at (but instead of giving birth it became a life or death situation) successfully advertises itself as being home to one of the largest Level III (highest level) Neonatal Intensive Care Units (NICU) in the nation and is the second, yes, 2nd busiest labor and delivery unit. They claim that they are home to the nations leading physicians and specialists.  The hospital offers 30 labor and delivery rooms, a high-risk maternity unit, post-partum and high-risk antepartum units and a Triage Unit for women’s emergency and urgent care.

If you were this hospital, would you allow a doctor who carries no medical insurance to use your facility?

Well this one did.

The political arena that hospitals and doctors are in is prone to blurring the lines of responsibility when risk on a life is taken.  This is just the nature of the beast.  Hospitals will protect themselves and many doctors will protect themselves when an injury takes place during the care of patients even when they have sworn ‘to do no harm’.

When a doctor decides that he is not going to carry medical malpractice insurance, the law (in FL at least) says that he is required to post a sign somewhere in his waiting room, but does an expecting mother (who has never experienced medical malpractice) go in for a check-up and scan the room making sure she has read every sign on the wall?  Also, do trusting mothers-to-be even know about Medical Malpractice Insurance?  I sure didn’t.  I was thinking baby stuff, baby showers, baby steps, baby fun, “does my maternity shirt fit me right? It feels tighter today.  I have heartburn, how many Tums have I already taken?  I wonder what color of eyes my baby will have?  I can’t wait to see him” and other thoughts that race through your mind when you are in the midst of preparing for the exciting unknown, hopeful that it somehow goes your way- just a little.  You feel, ready or not, this will be something incredible as you put someone else before yourself, watching them experience life and learning to have joy.

Who is the kind of doctor that says, not only am I NOT going to carry medical malpractice insurance in the event that anything I do or fail to do harms my patient or her baby, I’m also not going to carry the bond required by the state OR be a part of the state sponsored brain injury association (some states have a program like NICA in place), and what kind of hospital lets a doctor like this attempt to deliver a baby in their facility?

Basically, a doctor like this is an uninsured driver on a busy, high traffic freeway and therefore if he drives recklessly, most likely people will be harmed and families will be devastated.  Now, why would a state of the art hospital allow a doctor with no medmal insurance in its corridors?

“Float Like A Mommy Butterfly,
But Be Ready To Sting Like A Bee When It Comes To Yours And Your Baby’s Well-Being During Birth.”

I’m no politician but I’ve become aware of the politics (as hospitals are known to bring status to communities) and I hope my experiences will encourage women to educate themselves when it comes to bringing a child into this world.  Float around like a mommy butterfly, but be ready to sting like a bee when it comes to yours and your baby’s well-being during birth.  I am encouraging women to not be smarter (since the doc went to school for the medical degree) but to be wiser when it comes to their bodies, hospitals methods of labor and delivery, labor and delivery drugs, hospital’s and doctor’s histories (never guess, trust, or assume that their medical practice records are healthy- check them), and brand new nurses administering Pitocin who don’t ask for experienced support or back-up, don’t recognize fetal distress, don’t inform the doctor when you need oxygen (even though she doesn’t know why you need it in the first place) – um…you can’t run at that point so you better know how to pray and scream in a military tone for help since they may brush your concerns away.

Something many hospitals are doing these days in order to encourage the business of moms-to-be who are into water-births and other natural healthy ways of giving birth, is to allow for a labor plan.  If your doctor is supportive of it, you must give your plan to the nurses and some hospitals are equipped with birth-tubs.  It doesn’t have to be all or nothing anymore.  More and more doctors and hospitals understand this and more and more moms-to-be are learning about the dangers of labor and delivery drugs, and the benefits of more gentler approaches to giving birth.

The improper monitoring of Pitocin administration can lead to death.  A multi-million dollar hospital solely dedicated to women and babies can allow a 2-week new nurse to almost kill both mother and baby with Pitocin.  Or was it the doctor?  Do they blame each other?  What is the reality here?  Our family gets doses of reality 24/7 after what took place.  What did take place?  Is it my word against theirs?  What about my husbands word?  What about what the records say as well as other medical professionals?  I can tell you right now that if you are in a hospital during birth and you are given Pitocin, they have experience, money, and a reputation to protect.

I don’t have Cerebral Palsy, my son does, I have never left his side, and if I have, it has been met with hardship since he struggles with feeling vulnerable around others who aren’t familiar concerning his extra needs.  Of course we strive everyday to encourage as much independence as possible.  It takes boldness in moments when we would rather just do something for him or remove all obstacles from his path.  It must be balanced with unconditional acceptance, love, and cuddling.

I hear every breathe he takes, I hear every sound he utters.  I absolutely know he struggles whether or not he is aware of his struggles.  He can’t put them into words except for “OW!”  or “I’m tired”, or emotions that have no words, just panic, or insecurity.  I’ve seen it, I’ve witnessed it, I have comforted him in the midst of it.  Can he become a doctor one day?  A Scientist?  A teacher?  An Olympic Athlete,  A Father,  A Husband,  A Post Office Worker?  A Grocery Store Clerk?  A Business Owner? It will be up to him and the quality of care we are providing to him in his early years.

It is truly okay.  I’m so over the fear… the senseless fear that gets in the way of his needs.  It’s the exhaustion that we must deal with carefully.  Where there is love, fear cannot be.  I never thought my fears for Daniel could be selfish, but I am learning that they can be.  He is not just my son.  He is a son of God.  He has a purpose here.  I get to be with him, provide for him, enjoy him.  I get to witness his beautiful life and to receive his love.  Love that he feels so often and so much that he actually enjoys saying it to me 50 times a day or more.  My husband has been informing me lately that when he is carrying Daniel, Daniel will sigh and say, “Daddy?  I Love momma”…  I’m totally bragging… it’s just such a unique expression of love that Daniel has developed from having people that he can trust and rely on when his body is not always reliable, including cuddling, snuggling, giggling, encouraging, cheer-leading, taking for a walk, carrying him when he’s in pain, taking him to specialists that can make his challenges manageable, keeping track of all his physical needs so that he can be free to express himself and enjoy life.  Of course he loves his daddy with all his heart, you can see in the video below that his daddy has carried him and taught him “Keep going because I’m going to be by your side”.

One of the things I am teaching him to recognize on his own is… get ready, it’s a potty-word… the color of his PP!  At age 5, Daniel can look at the color of his urine and determine if he is dehydrated or not.  This is an important skill he will need to keep up on if he is to be independent – water intake and preventing dehydration.  His body is already in a weakened condition so optimal nutrition and fitness is 20 times as important for his body.  Dehydration can lead to all kinds of strange problems including dental problems.   So if he can start understanding his body’s signals – starting young, he could be a good candidate for taking care of himself one day with some assistance.  Anything that will allow her child to be independent and happy is any mother’s highest hope for her child.

Tribute to Daniel:

Children with such individual, extra special needs, bring so much love, so much value, so much sweetness and magic to life that it is indescribable and I can only thank Heavenly Father for allowing me to be Daniel’s mother.  He didn’t have to let Daniel live.  Daniel has suffered.  He was traumatized physically and I’m sure his big spirit was questioning the circumstances.  I think Daniel wanted to live so much and when I told Heavenly Father that I wanted to be Daniel’s mother ‘no matter what’, I know that He let him stay.  I am so grateful for that.  I am not the same person as I was before my children were mine.  I am so grateful for that too.  I am more of me and still becoming the mother they deserve and need.  It is a process and to be a part of this process is truly unique.  It certainly has unique challenges and is the hardest work I have ever loved.

More importantly though, is not how I feel, but how people with Cerebral Palsy feel.  I wonder if that is something we people take the time to actually find out?  20 years ago, it was mostly impossible except for the use of typewriters.  Here is an early and retro video of an awesome young woman who chose to use a typewriter to communicate with the world.  It is her gift to us to help us not be so ignorant.  Oh, and take extra notice of the woman on the bus who is awkwardly staring at Bettina because this is how you look when you are ignorant (in the kindest sense) to people with more obvious challenges.

Bettina Brown

Click on the image below for a peek at the latest technology for communication.

Now’days we have facebook, and other social media for people with Cerebral Palsy to use and it is to everyone’s advantage right?  That is the miracle of technology when used for good things.

So, the big question in a perfect world at all times when in the company of people with Cerebral Palsy would be what?

If each one of us asked ourselves each day if we were being a part of a solution (to any situation) or a part of the problem- I don’t think people with Cerebral Palsy would have to feel the way many of them (especially children) do.  Here are some first hand accounts from their own mouths.  Please keep in mind that I have edited names out.

From a smart young boy (only 5 years old) :

“OCT, 7th, 2010. DR. Sanders. Give Dr. Sandler a darn good funny bad word because I feel real proud to do things for my teachers. I am tired of people being mean. Friends do not understand me. I feel dumb. I want to try to find my voice. Will you help Kim find me a voice? I feel people is dumb about my cerebral palsy. I am afraid because dumb people think I am mentally retarded. I am smarter than world thinks I am. I get mad at school because I don’t feel like a baby. I feel bad because I try to tell the teacher I can read fast and I can’t tell her. I don’t pee. I stay dry so they don’t think I am a baby. I like Girl just fine. I feel embarrassed to tell friend far down the road I will talk. I get discouraged. I feel I don’t make girl happy, Miguaelina. Kim is my steering wheel. She loves me always. I am her star son. I try to fill Kim with joy. I believe I am smarter. Please ask my teacher to do right by me. Tell her I am smart. Tell her I do read hard books. Thanks,(name)”

“November 2010 to my classmates. I talk with a communication device. I spell the words and my mama is my voice that speaks the words. I am smart just like you. I feel bad when I can’t talk back to you when you talk to me. I like all of my friends. I think it is funny when girls dance. If I could dance with you I would. I thank you for being my friend. School is scary when you can’t talk. My mom tells me she will soon find a way for me to talk to you. Talk to me I understand what you say. Sometimes I blink my eyes to say yes or to say hello. I like friends, music, movies and my dog shafty. Do you have any questions? I will try to answer them. Thanks (Name)”

“My well intended advice for well intended comments people make everyday. 101 lesson of what not to say in front of a mom and her child with a disability. Lesson one- Please always assume the child you are talking about whom is right in front of you can understand way more than you may think they do. Please realize when you say things to a mom like how are you going to keep lifting him up? He hears and understands your comment and he feels scared and like a burden. Know when we get home my heart breaks when he (types) tells me he is sorry for hurting my back. Know when you tell your sad stories about someone else you knew that had to put their child in a home because they could not take care of him or her anymore that it worries and scares him. It is something we parents and children are very much concerned about and do not need to hear every time we get a chance to get out of the house. Please know that when you ask questions in astonishment such as he can read or type? That it hurts and insults him as a person. Remember just because he can not talk back to you, does not mean he does not have anything to say. I ask you to try for one day not to talk. Try for one day not to even be able to have a facial expression that conveys what you think. Ask yourself how it would feel not be able to even move your hand in a manner to let people know there is a person who feels emotions inside of that body they are trapped in. Please know I am not lecturing and do not feel angry. I am just trying to educate you so one more child or parent does not have to spend one more minute in their lives feeling worried or frustrated. I never knew these things either until I have lived it myself, so I do understand how easy it is not to even think about them before you speak. Education is the key to all doors that may be opened in our lives.”

“It was so hard for me to sit back and watch kids play while i had to just sit there…  I hate not being able to dance with my sisters but I loved watching them dance.”

“My son who has severe quad CP can not participate in any normal game playing other children at his age do. I know he needs and misses out on being with children his own age. I wonder if it is more frustrating for him to just have to sit and watch other kids do what he can’t do or if it is good for him just to be able to watch? As a parent I hate he does not get to run or throw a ball. I sometimes think that maybe it just makes him feel more left out and frustrated if he goes around other kids and sees what he misses out on? It is a struggle for me to figure out what is the right thing to do. He can only communicate some to me when sitting in a certain position on my lap and hitting letters on his abc toy. He has expressed to me he feels bad because he can’t please his friends because he can’t even talk to them. He cant use his arms to touch anything while in his wheelchair. So he shuts down in public a lot because I think when people talk to him he feels bad that he can’t answer them back…”

“I have a older son who has gotten left out of so many things also. The family and friends do not invite me and (name) to do things, why I am not sure but in turn that leaves my older son left out a lot. I guess they assume we can’t do things like cook outs, dinners or camping trips. Some things we could and would love to do. They could have been a big help to me if they would have included my older son in things because I have to be here to care for my son with CP. Now after years have passed,  I see the effects it has had on my older son, not good!”

“I try to explain to him that he is perfect the way he is but we do need to do therapies to try to help him not to have to be in so much pain with the tight spastic muscles. We need to try to prevent scoliosis and the rib flaring that can cause breathing problems. He needs to move his body and learn to do some things for himself. It’s hard for him because his CP is so severe. It effects every part of his body. He can not even pick a toy up and hold it. So we just keep trying, that’s all we can do. It’s scary for him to be so trapped in his body. It would be scary for anybody. On top of all of that he has to deal with seizures everyday. It’s tough on both of us”

How they feel about constant physical challenges:

“I have always had sleep problems, my mom tells stories of having trouble getting me to sleep. I still have problems. I find a mid-day nap can take the edge off of a sleepy crappy the night before”

“A lot of people with CP and any other kind of neurological issues have trouble sleeping. Me included. Doctors sometimes have told me and others I connect with that people with neurological issues have trouble sleeping because their brains don’t shut off like most people’s do…..In other words their nervous system is in overdrive a lot of the time.  Also have trouble sleeping myself because of spasticity sometimes. I take baclofen but spasticity bothers me a lot more at night a lot of the time. Not sure why. Was that way as a child too (I’m nearly 29) and I remember my mom telling stories of how she would have to massage my legs at night because I would wake up crying. My CP is mild, so she never associated that with spasticity, but looking back now, I know it was…”

“I have this problem, and the neurologist said that sometimes, due to CP, the sleep-awake pattern can be thrown off (i.e., the natural body clock), which, if left untreated, may result in severe fatigue”

“people with brain injuries can’t be expected to live life at the same rate of activity as those that don’t have injured brains. This is what I try to get my mom and others to understand. But they can’t possibly understand since they don’t live in my shoes. Which means that just because they may think I can do something that doesn’t necessarily mean I can.”

“…I had the same problem as a baby and I was told that it takes our bodies longer to relax enough to sleep and I think its worse for babies with CP because their brains aren’t developed to the fullest and they can’t relax enough to sleep.”

“My son is almost 7 years old and sleeping has always been a big problem. He has severe Quad CP with seizures. I do the melatonin. I think it helps some. I think it is either a combo of problems or sometimes just one. Here is my list, acid reflux, spastic tight muscles, the over stimulated nervous system which is hard to shut off. Myoclonic jerks, seizures , hip and leg pain. The DR said sometimes with CP its according to which part of the brain is affected it messes up your sleeping clock, there’s a medical term for that. The body sometimes does not make melatonin as it should therefore does not tell the body when to sleep or wake.”

“…This is why when you have a child with CP, who is school age, (3-21) the IDEA and ADA laws are your BEST friends. You fight and keep fighting, and honestly, the fight is a necessary one. Why? Because if people truly want an inclusive society, we have to include those who have disabilities into public/private education. We can’t just keep everyone segregated, as in special needs schools vs. regular public and private education.
I’m speaking from the standpoint of being born with severe CP to somehow progressing, through lots of therapy, to some form of mild to moderate CP.
And now, I’m studying to be a special education teacher; yes, special education is absolute hell. But someone has to speak up and do something about what happens in public and private education just so that society eventually learns how to treat and teach those of us with special needs. And society is learning; it’s just they aren’t learning quickly. For example, there are ways to obtain the needed technology in public and private education settings…”

This is just a small sampling.  Get to know someone with Cerebral Palsy and make them a close friend, you’ll wonder how you ever went through life without such a friend.

I’m grateful for mine and Brian’s friend, Becky M. that we hung with when we were younger and living in California.  I didn’t even know she had Cerebral Palsy until my son was diagnosed with it because I only saw Becky, not her disability.  Later, I realized that she prepared Brian and I in kind of a serendipitous way since we had not had a friend like her before Daniel came along.  She would call me up during the day sometimes just to chat and a short conversation took effort.  I had to keep asking her to repeat herself, but eventually we would have a meeting of the minds as I would work to understand her and as she would put forth incredible patience with this seemingly hard of hearing friend she had in me.

Some people with Cerebral Palsy can’t form any words.  Communication devices are getting better and better with advancing technology.  Daniel may want to use one some day in the future when he feels he has a lot to say since his CP does not allow him to talk freely.  He has to form each word very carefully and most words he can’t say clearly at all and thankfully this can improve with therapies.  So, once you become familiar with their ‘accent’ understanding what they are saying is not always difficult, rather it is a healthy, worthwhile challenge.   They see the world through different eyes.  They also see unnecessary lack of open-minded attitudes and are at the receiving end of it.  They are far ahead of the game of life, if you ask me, what with all the weighing of human responses to their challenges they witness up close and personal.  After all, It’s hard to fake that you are an intelligent, caring person for more than an interaction or two with these people.

How many 4 year-old’s do you know who have to have a ‘spot’ of their favorite ice-cream after dinner? I don’t know, maybe their are plenty of them but most evenings after dinner Daniel says “Momma?  I want mint”  in the cutest way he can – which is really super cute.  When Daniel discovers a thing or a routine that he likes, he doesn’t forget it.  He is referring to this delicious quality treat.

If I am going to buy cow’s milk for my family, it has to be in ice-cream form and it has to be Tillamook.  I know, I sound like a commercial.  I am just fed up with other brands that fluff their ice-cream up with air and corn-syrup.

Plus Tillamook ice-cream comes from cows that are well-taken care of and not fed artificial growth hormones.  I want the real deal and Daniel also loves their cheese, so I DON’T buy it often since he asks for slices of it all day and I know that isn’t as healthy as other forms of calcium and protein.

So we kind of stumbled upon this sweet tradition with Tillamook after dinner.  I bought these little stainless steel ramekins from Costco…

I’m sure there are some cuter ones and ceramic would probably be less cold to handle since stainless steel quickly gets cold and wet on the outside but these cute little cups hold just enough ice-cream to say that you got some and to savor little bites.  Also, if I pack the container and the 2-3 tablespoons of ice-cream are bulging up out of it like an ice-cream cone, the kids actually perceive that they are getting a lot!  It’s a cool little trick of mine.  This way, I am teaching them moderation in the SAD (Standard American Diet) and helping them learn how to stay healthy.

So now we have gotten used to eating little bitsy spoonfuls of ice-cream.

It must not be that great of a thing because when my sister was visiting and saw me feeding Daniel tiny bites of ice-cream (that only perched on the tip of the spoon) during a family party, I noticed that when Daniel came around to her, she quietly, yet with gusto, got a huge spoonful of ice-cream and filled his mouth full of it with an “Auntie is gonna take care of your needs” look on her face.  Later I acknowledged her smoothly executed show of care for making sure Daniel had a very happy childhood with memories of big mouthfuls of ice-cream from his Aunt.  And I truly mean that, happy childhood makes for a happy adulthood in my opinion and family is key to that!  Thank goodness for family.

Speaking of which, here is what Brian and I support and believe about the purpose of the family and this belief has had a great impact on who we strive to be to each other and as parents:

The Family: A Proclamation to the World

Yes, I am LDS, some people call us ‘Mormons’ but that is just a nickname- We are Latter-Day Saints because the name of the church is: The Church of Jesus Christ of Latter-Day Saints and it is the greatest church on the face of the earth. It’s True.

  I made a choice in my 20′s to live as a member of the LDS church, although living it is always a work in progress and it’s the best choice I’ve ever made.

I am getting ready to author a post that will hopefully help dispel the ignorance often shown by people, young and old when they meet someone with Cerebral Palsy.  I don’t mean ignorant in an insulting way, I mean it in the literal sense, as in without awareness, comprehension, or understanding.

Also, here is a great book that you could read to someone you love to prepare them for when they meet someone different from what they have been taught is ‘normal’ so they can have an open mind when they do: In Jessie’s Shoes

I hate to admit that I’m vulnerable but I was practically sobbing by the time I got to the 2nd page of that book… it was embarrassing, nothing I could do but try to keep reading it through blurry eyes and hope that my daughter didn’t notice.  Try to read it to your child without shedding a tear… Brian even choked up when he read it to our 11 year-old… maybe it’s just parents that do this.

Here is a song that speaks to me lately, especially when it’s playing on my Bose:

What music lends voice to your days?  Share it here.

We are fans of local Raw Honey. When you have a child who is medically fragile – you don’t want the medical profession who harmed him in the first place calling ALL the shots. I have learned this since being Daniel’s mom and through conversations of other mom’s in unique mothering situations.

It just makes sense to me that if our bodies come from the earth, then food and plants from the earth in their intended state are probably the best medicine when it comes to maintaining optimal health.  Medications and medical science and technology are important to my sons health but it is the nutrition that does the driving.

I have read that eating Raw Organic Local Honey minimizes seasonal hay-fever. My dad has always suffered from major seasonal allergies – sneezing and sneezing, and often dowsing his face and eyes with water throughout the day to get the pollen spores off. I brought him a jar of local Raw Honey that I buy at Real Foods Market and he told me it helped a lot. I make sure my children get raw honey everyday and we have never suffered from allergies. Here is why.

Just today, I put a dab of raw organic honey on Daniel’s cut that he got from falling… something kids with CP do about 10 times more than other kids. In fact many adults with CP have problems like early onset arthritis from playing with kids when they were young. I know a grown man with CP who’s nickname was Crash.

I make the best cough syrup too with this raw honey although I haven’t had to make it in a long time. I use fresh squeezed lemon juice, local raw honey, a tiny bit of organic cold-pressed olive oil and Immune Illume from Living Libations. It is hands-down the best tasting cough syrup in the universe and it is real to our bodies and it heals, instead of covering up and masking symptoms. I add a few grains of natural sea salt to make it just right. Drug store cough syrups have never worked for us and they are poison in my opinion. But that’s just me. Here is another place to get some unique raw honey.

Here is an awesome family doing an incredible service for those taking care of extra-special needs children. Check them out, ‘Like‘ them on facebook and please share their great site with others.

Also, HERE is a mom that makes sure her fragile son’s life is exceptional, don’t miss out on getting to know people like this, they teach a LOT about LOVE.  You can find her and Tripp on fb too.

I seem to be toggling my posts from the very dramatic and eye-opening to just fun and helpful.  My posts are a reflection of my days.  I wake up some mornings to stressful medical situations that need to be handled with courage and tact (which I haven’t always) and days can go by handling problems that need solving surrounding our families unique situation.  Other times, I’m in the space where I get to experience full on how my kids are so cute and fun that I just giggle, and being childlike with them allows us ride tidal waves like a surfer.

During these times I am fully aware of how good it feels to be a mom to my children even with challenges, (get-your-self-suited-up-in-camo-bullet-proof-gear-and-book-it-through-the-dry-grassy-terrain-with-sniper-rifles-shooting-at-you-keep-your-head-low-maintain-a-steady-pace-and-watch-your-foot-fly-through-the-air-like-a-bloody-stump-after-stepping-on-a-mine-but-making-it-back-to-bed-safe-again) crazy days, and all.

(I’m sorry, but Brian and I got a good laugh at the above mental picture of some of our days and laugh is what we need to do to stay healthy)

Recently Swiss Days came to Midway, UT.  I had been hearing about Swiss Days and knew I wanted to join in on the unique festivities.  As the Swiss Days weekend approached I sent out emails to my family about the event.  I got several positive responses and was optimistic and hopeful that they would actually show up when the day arrived.  We all settled on Friday, the first day of the 2-day event, as being the best day to meet in Midway.  We hadn’t really planned out any logistics as to what we would actually do or how we would go about navigating the crowds of Swiss Days fans thronging the cute main street of Midway (It really is the cutest mainstreet I’ve ever seen- right up there with Fallbrook, CA’s mainstreet).

My husband Brian was visiting us that week.  Could the timing have been better?  This is why I know Heavenly Father loves me… he just makes things happen.  He knows the desires of my heart surrounding my love of life and family.  Brian has been in Texas for the last 4 months for work with this Awesome Company.  So the end of the season had come and after competing in the Superbowl of Vivint and taking a Harley Davidson in the Car Wars, he needed to come home and remember why he worked so hard.  He was going back out to do a 1 month extension so a good break was in order, after all, they do work 6 days a week during the selling season.

So by the time Friday came, after spending a fun week together as a family doing stuff like this, I had gotten distracted about who was coming to Swiss Days and when.  As Brian, my sister, and I were walking to the festivities with our combined 9 happy, energetic, and rambunctious children (cousins getting together is the best!), we got a call from my sister-in-law asking us where we should meet… by the time we got settled in the park at the center of the happenings my parents, my brother and his family, my sister and her family, and our family, were all together for an evening of authentic Swiss fun.  The food was fantastic too!  Can you say: Scones (the size of your head?).

Here are some of the vendors I bought stuff from – local talented business moms and families create unique items and the prices are low since they want to move their wares and get new customers.  I don’t want to miss Swiss Days next year!

(To Order Her Skirts & Matching Hair Clips for Little Girls and Babies: Call 385-204-3621 and leave her a message requesting more info on how to order)