Lessons Learned

I'm thankful for 2011. This year has been particularly difficult and freeing. It  was perhaps more challenging to me than the time of Cody's birth trauma and official diagnosis. It brought the celebration of Cody's tenth year of life. In both the months leading to his birthday and in the subsequent months, it was  bittersweet. The bitter in that as his tenth birthday approached, the realization how quickly time had flown and in many aspects that Cody's life in the present/future and as a caregiver/parent becomes more arduous. The sweet is in the deep gratitude for EVERY day of Cody's life. He possesses  the greatest attitude of everyone I know (happy 99% of the time), his perseverance, and appreciating each day as it comes.....

Here are some of my most valuable lessons......

1. I'm learning to be less offendable. If you know me at all, you know that I am not a fan of the word "retard" and also "jokes" pertaining to those with disabilities such as the common "short bus" anecdotes. I do feel a sense of responsibility in communicating to others not only about the words themselves but the attitudes behind them. I also realize that most people do not intend to be hurtful. The  time that a tween boy at the mall used the word "retard" when he spotted Cody hurt terribly but has also taught me a valuable lesson. I need to let some things go....I will never be able to change and/or control the entire world in how my boy is perceived. I just need to concentrate on the day to day as Cody  (and Hannah's) mom. That perspective is liberating!

2. The internet is a blessing and a curse. I have a friend that jokes that regardless what simple ailment she or a family member possesses that after a considerable amount of  time spent on medical sites, she believes that it is likely fatal. I am a proponent for gathering as much information in regards to treatments, therapy, surgeries, and so on..... but there are times that too much information can be overwhelming! I'm learning to do the research,  take a break to digest the information, and then consult with Cody's entourage (doctors, teachers, therapists, etc), repeat... :)

3. A parent with a special needs (or typical) child is their child's greatest "expert." The doctors, specialists, therapists, and other professionals in your child's life aren't always "experts" on everything that is your child. I've learned over the years that CP (like every other disability or condition) presents itself differently in each unique individual.  There have been times that these great folks working with and for your child will differ in opinion. Ultimately you are the "coach" of the team and you need to make the call. Perhaps your call wasn't the best play so you go to plan b, c, d, and so on.... (My sad analogy comes from years of marriage to an avid sports enthusiast).

4. I'm not a  naturally confrontational person but had to develop that  to better advocate for my son. I took a personality test in my early twenties; the D - dominant personality trait hardly registered. Life experiences/changes will typically alter the personality test results for everyone but this definitely occurred after Cody's birth for me. A prime example of developing that confrontational edge is with the insurance companies. Insurance companies routinely deny coverage for services, equipment, and treatments with the phrase "not a medical necessity" attached. The key is to appeal that via letters from doctors, teachers, therapists and making a case personally to an individual of position from the insurance company. I like to think of myself first as "the polite squeaky wheel" and if the polite doesn't work....just squeaky!

5. I'm inspired by others. When you have a child with disabilities you become a member of a club that no one would ever sign up for but after you're in it for a while, you greatly appreciate the extra-ordinary individuals that you may have never met otherwise. I've met children and adults with disabilities and their families that inspire me greatly. We're all on our own unique journey; we can learn from others in their challenges and triumphs. Communication with other parents of children with disabilities/chronic conditions is invaluable. Often I'm reminded that at any given time that someone else always has it more difficult.

6. I've had to allow myself to grieve not only for Cody but for me as his mom. It's OK to be somewhat sad as others share their child's athletic prowess. It's understandable to  rejoice with them while at the same time feeling a sense of unfairness for your child. It's rather amusing that I can be slightly envious as a mom complains how "Johnny" has made a huge mess, climbing the bookshelf, or won't stop talking. It can be heartbreaking observing  Cody when he's frustrated with his own body. I've had to make a decision to allow myself to feel that way for a minute and then just do the next thing.

7. Faith, Trust, and Planning  My greatest apprehension  is Cody's future when I unable to care for him. I think that this vulnerability is felt by every parent no matter the capabilities of the child. I know that as much as I love and care for Cody that God's love for him is even greater. I also know that as Cody has already exceeded so many expectations since his birth he will continue. I'd rather have high expectations for Cody so he may aspire to meet them than to have little or no hope.  My motto is to hope and pray for the best but plan based on the realities of today. Planning for your child that most likely will have to live dependently on others is a daunting and necessary task.

8. Be good to yourself   Often I feel like I can never do enough to be of help to Cody but I'm learning that there are times that extending grace to myself is very important. This can take different forms for everyone depending on your interests. I enjoy reading, photography, (ATTEMPTING at) being crafty, etc.....

9. Sense of humor is key! I come from a long line of goofy. :) The ability to see the humor in life truly helps in surviving the most difficult aspects.

The close of 2011....
Christmas Eve

Hats (or Ears) Off to Disney

Last month we spent our fall break at Disney World. Undoubtedly you've heard the rumor that Disney is "the happiest place on earth." I call it "the most accessible place on earth." 

We began our time at Disney equipped with these very useful tools:

 This is our well-worn Guest Assistance Card. It enabled Cody and his entourage (hipper than saying family) almost immediate entrance to rides, shows, etc.

 

A Disney "cast member" (aka: employee) directed me to the disability maps. This cast member was one of many that we met with disabilities (which speaks volumes). The maps clearly identifies the wheelchair accessible rides.

       

 Cody is introduced to the Toy Story ride at Magic Kingdom: 

                                

The attention to detail to make these rides accessible is greatly appreciated. The cast members throughout Disney were very accommodating and sincere in their attention to Cody. This mom couldn't ask for more!

Cody (and the rest of us) enjoyed the ride so much we had to ride it again....this time with Grandpop!!

Here's an example how I shouldn't underestimate Cody. I sincerely didn't think  he  would would enjoy the Aladdin-magic carpet ride. I was concerned that he would be frightened.  Just take a look at the pictures.... I was wrrrrrrrrr-ooooonnnggg (to be read with your best Fonzie impersonation).

Guests with Disabilities are the first to board rides. Typically, people with special needs are considered as an afterthought.

Could he look any happier???

Here are a few other highlights:

Cody enjoying the Kilimanjaro Safari at Animal Kingdom.

  

 Three of my favorite characters.

The pièce de résistance  of our trip ..... Cody meeting Woody.

I readily admit that this mom teared up a time or two during our week at Disney. Often, attractions that we visit advertise that they are "handicap accessible" but in actuality it  means  that they have sidewalks....not that they have accessible activities for those in wheelchairs or other medical equipment. Witnessing Cody being able to be A PART of all the fun and the joy that he had was amazing.

Wrestling With God

There are a lot of blessings in having a child with disabilities. It has changed my perspective drastically and wonderfully. Since Cody's birth, I don't worry as much about the "little things." In our household, there's no such thing as a small miracle;  we celebrate the most minuscule of developmental accomplishments!

I also have times that are especially trying and strangely it isn't in the "bigger"/traumatic events such as surgery, seizures, etc... It's often in the smaller things such as noticing a pained expression on Cody's face because of his spasticity,  his frustration with his body, or not being able to easily communicate  his wants and needs.

I often think back to a conversation that I had with my mother when I was about ten or eleven. I remember beginning with, "I think I am an atheist." I had told her that I had come to the conclusion that God couldn't exist and I had several reasons to make my case. I distinctly recall  this point... How could there be a God when there was so much suffering in the world, particularly with children?? (I was basing this on a recent  trip we had taken  to visit  family out of state which included a day spent at Six Flags. Also visiting that day,  was a school of children with disabilities. I recalled  feeling such empathy and a sense of unfairness  for my peers. This wasn't a very common sight back then. It was long before the Americans with Disabilities Act; inclusion did not exist as it does today).

Happy to report that nearly a decade later, I changed my opinion and became a Christian in 1989. It has proven to be my greatest personal decision.

We've experienced the miraculous in the fact that Cody is alive today; he survived nearly twelve minutes without oxygen. One of the first: a nurse practitioner whose shift ended for the day, was leaving the hospital when she heard the STAT call as we were heading into the operating room. Days after the delivery, she came to me as Cody continued his fight in the NICU. She told me that as she entered the room, the neonatal doctors and nurses were gathered around Cody after the 2nd attempt to revive him. She then prefaced  the rest of her involvement with, "I am not a religious person. I've never been a believer in God  but I heard an audible voice say, 'Try one more time." She convinced the others in the room to try once more to resuscitate Cody; they were within seconds of pronouncing his death. They did try once more....and he breathed. I'm indebted to her and the Lord.

Cody's struggles were not over. He began to experience seizure activity and was placed on a breathing tube. The first neurologist was very doubtful of his survival without the tube; his initial MRI was not promising. Six days following, he was taken off of the breathing tube and was breathing just fine...TAKE THAT BRAIN INJURY! The following  five weeks in the NICU were challenging  but he continually exceeded expectations.

Cody w/breathing tube.

The day Cody's breathing tube was removed!

Several months later, a  friendly acquaintance at church asked me how Cody was progressing. I had communicated to her that I was beginning to see signs of developmental delays. She responded with, "God never heals halfway." She was well meaning but that statement echoed in my mind for a long time. I thought of those first hours, days, weeks and  the helplessness that I felt as a mother. I also thought of the overwhelming peace that I experienced when I resolved in my heart and mind that as Cody was not in my hands that he was in God's..... no matter the outcome.

I've had my share of "wrestling with God" days. I've had times of talking at Him...not to Him. Everyone has experienced suffering, loss, disappointment, pain, grief, etc.... I think that people (including myself) often equate suffering with God's absence but the opposite is true.
Romans 8:28a, 37-39.
"And we know that in all things God works for the good of those who love him. No, in all these things we are more than conquerors through him who loved us.  For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."

Even though there are  challenging days, I've altered  my childhood perspective of  God and those with disabilities... because of Cody and  others with disabilities that I've come to know, I see Him more clearly in their perseverance, their joy of life, (the list goes on).......

Take Deep Breaths

I know that flying on an airplane terrifies many people. I was once on a flight from DFW to RDU with my then four year old daughter and we happened to be sitting across the aisle from a young woman; she had her nausea bag clutched tightly in her hands almost the entire flight. I was relieved  when we landed without incident and her color turned from a greenish hue to a more natural skin tone. Hannah later asked why the lady held that bag and I explained that she must have been nervous. She could not understand why anyone would be nervous flying; she thought of it as a WONDERFUL adventure. Hannah  loved everything about the plane...including the lavatory. I eventually had to limit our visits to the restroom once  I realized that she thought of it as her personal playhouse.

Hannah at age four.

I haven't flown as much in the ten years since having Cody. The main reason is that air travel isn't the most accessible and when we travel, we bring along  Cody's extra equipment. I shudder to think of his equipment  being "checked" and definitely not able to fit in the overhead compartments.

Typically, I'm one of a handful of passengers that actually makes eye contact with the flight attendants as they recite the safety procedures. I'm curious if anything has changed since the previous time I had flown (it rarely does).  I  find it odd that the majority of  passengers act as if the flight attendants  are invisible during this time. This is also the time that I size up the folks that have been  chosen to sit  near the emergency exits. ;)

Recently I was reminded of the part of the flight attendants' speech pertaining to the oxygen masks, “In the event of a sudden loss of cabin pressure, oxygen masks will automatically descend from the ceiling. Grab the mask, and pull it over your face. If you have children travelling with you, secure your mask before assisting with theirs.” To most parents, this would be against our instinctive role as a parent or caregiver. I thought of this as a perfect analogy for us as mothers (and fathers) of children with disabilities.



Cheesy/Effective oxygen mask illustration.


Having a child with disabilities and/or chronic medical condition can feel as if you are  on a roller coaster and constantly anticipating that next drop. The "drop" can take its form in a rush to the emergency room, a seizure, a negative reaction to a new medication, additional orthopedic complications, etc... Please understand that this roller coaster ride is also wonderful, exciting, and worth the drops. :)



I googled "roller coaster drop"....this was an option --- PERFECT! :)


I have made some friends that were first informed of their child's potential diagnosis during pregnancy. They heard words such as: down syndrome, deformity, abnormal, etc... These words echoed in their hearts and minds for months, weeks, days before delivery. Their "roller coaster" experience began before they even held their newborn in their arms.

In recent years/months, as Cody has grown (particularly in size).... I've come to recognize the importance as a caregiver of putting on that oxygen mask first. We can't give to others if we aren't taking those 'deep breaths' ourselves.  Those deep breaths can take different life-giving forms depending on  each unique individual. It can be in hobbies, exercise, reading (a personal fav), friendships, support from other parents w/children with disabilities, and so on...... The key is to MAKE TIME FOR YOURSELF!

Cody's latest pic - today 9/16/11

Stamp of Approval

Forty years ago, most of the equipment for children with disabilities were yet to be created. I have a dear aunt that had told me that when her son was little and in need of a wheelchair...they simply did not exist. Her father-in-law should be inducted into the "Grandfathers Hall Of Fame" for 'making' a wheelchair for his precious grandson by adding onto a stroller. I often think of  that conversation while ordering new equipment for Cody.

Cody uses a variety of equipment on a daily basis at home and at school. This blog post highlights some of the best. These get Cody's stamp of approval (mine as well):

Until four years ago, Cody was still in a crib. I had searched for a bed that was like a hospital bed (BUT COOLER) and found the Sleep Safe Plus bed.

http://www.sleepsafebed.com/Products/sleepsafe2.htm

The safety rail windows enable us to view Cody as he lies in bed and he can see out. The bed has motorized controls for repositioning. The ability to raise and lower the bed makes changing his diapers and clothes so much more convenient.  Before the Sleep Safe, I was forced to change him on the floor. My back is especially appreciative of the Sleep Safe bed!

Spring 2011 we made one of the best purchases for Cody.....his very own bike!

http://www.rifton.com/products/mobility/adaptivetricycles/index.html



I had received a call one day from Cody's physical therapist at school. She had place Cody onto a bike and he was suddenly Lance Armstrong. I was skeptical at first since we had tried him out on various equipment and couldn't get the proper positioning for him to access the bike effectively. This was yet another example of Cody exceeding expectations. He wasn't just riding the bike....he was having a ball!! Cody now has a bike for home and school.  Every child should have a bike!

The most recent purchase for Cody is most essential for him to have a 'voice' in this world. Cody is non-verbal. He does find ways of communicating through gestures, sounds, etc.... We've had a communication device in the past but with little success. Cody would become easily frustrated and simply turn the device off(which was humorous the FIRST time). Words can't express (perhaps I need a communication device) how thrilled we are with him utilizing his ECO 2 by Prentke Romich. https://store.prentrom.com/product_info.php/cPath/11/products_id/53
I believe his recent achievements with the ECO 2 is a result of updated technology, and his maturity.  After a month with his new ECO 2, this is a sampling of a conversation between Cody and myself.......

Cody on his bike.... 2/14/11

Yesterday marked the 21st anniversary of the Americans with Disabilities Act (ADA) being signed into law. I feel the benefits of this law on a daily basis....with ramps for Cody's wheelchair, handicap parking and various services. There is still more that can be done to enable those with disabilities life, liberty, and the pursuit of happiness.

 Beyond the legalities for people with disabilities, there is room for  improvement in attitudes toward these extraordinary individuals. As a mother of a child with multiple disabilities, I've seen that most are very kind in regards to my son. Children in particular are typically curious about Cody and his chair. I am more than willing to satisfy their curiosity. They often ask me if he has broken legs. I've made the decision some time ago to not say "cerebral palsy" when asked by young children of what "he has"  because they typically butcher the pronunciation. :) I now say "C.P." because it is much easier to pronounce and I also think it sounds hipper.

Here are a few of the less than desirable attitudes and communications in regards to Cody's disabilities....

When Cody was nearly one, we visited a new church. We went to the information desk and when asked by the pleasant volunteer how old Cody was (to determine his placement during the service) I explained that our miracle son had some significant delays. His developmental age did not match his numerical age. He was not able to sit, crawl, stand, etc.... I took my then seven year old daughter to her class. The kind, grandmotherly volunteer escorted Scott, my husband, and Cody to his nursery class.

Some time later, Scott met me in the sanctuary. I knew something wasn't right; he seemed upset. Halfway through the service he told me what had transpired at the classroom door. After our communication with this gal, she introduced Scott to the classroom teacher and then said, "This is Cody. He has problems."

I'm ashamed to say that for the rest of service I allowed a dark cloud to loom over me. I heard nothing from the pulpit. Scott had to convince me to stay in the service and not make a beeline to Cody's classroom. All I could think was if Cody were to continue to have significant delays in life, I didn't want words such as "problems" to be the identifying adjectives for him.

Another instance was a few years ago when Cody was about eight years old. My parents were visiting us in the beautiful city of Chattanooga. We were enjoying a local tourist attraction. We had met several people that afternoon including a woman and her young son.  As we were leaving, my dad was pushing Cody about ten steps ahead when our new acquaintance walked up beside me and pointed to dad and Cody and asked, "What's wrong with him?" I sarcastically replied, "Who? my dad?" She responded with, "your son." I answered, "absolutely nothing. Are you asking me what is his disability?"  After a few moments, she was on her way.

I'm sure her intentions were good. I know in my lifetime I've said (countless) things to others that did not communicate sensitivity.

 Thirdly, while shopping back-to-school deals at our local mall Cody and I passed a couple of tweenish boys. Boy A looked at Cody and then turned to Boy B and said, "retard." Boys A and B both laughed. I admit that I nearly lost my religion in that moment!! I envisioned myself turning Cody around and running over Boy A with Cody's wheelchair....leaving tire marks.

After I composed myself, I mentioned to Cody what I almost did to which he responded with laughter. He may be non-verbal.....but he is cognitively aware.

As I stated earlier, I believe that most people are well intentioned. There are still many that will continue to mock those that often times can not defend themselves. Handicap "jokes" have become ingrained in daily life and they permeate  the entertainment industry. In recent years it has been a hot topic with politicians as well. I believe if most had the privilege of knowing a person with disabilities and seeing their perseverance, courage, kindness, etc....it would make all the difference. The longer I live the more I realize that we all have "disabilities" ... some are just easily seen.

Perspective

In recent weeks I've had two encounters with women that were humbling, touching, and even humorous. On both occasions I was reminded that perspective is everything.

The first was a week ago with a nurse at our local pediatric hospital. My son Cody had to have dental surgery. He has cerebral palsy with a great deal of spasticity (muscle stiffness). He has been grinding his teeth to such a degree that he cracked several of his molars; the grinding is a result of  his spasticity. It was a simple outpatient procedure. Nevertheless, I slept fitfully the night before. Cody has been hospitalized before for different procedures.  It's never easy to see your child in the hospital for any reason; the vulnerability felt by any parent is always great.

After the procedure, I was allowed into the recovery room.  The room was open with a nurses' station in the center. Small beds lined the wall with one nurse per patient. The beeping and humming sounds of medical equipment filled the room. I felt an immediate sense of uneasiness; it was reminiscent of Cody's early days in the NICU. I made a beeline to Cody's bed. It was about that time that he started out of sedation. I found that my voice was quite shaky. It seemed I was performing my best Katharine Hepburn impersonation when I said, "Hi Honey." He was moaning but still managed to give me a groggy half-smile.

I noticed that Cody still had on his a.f.o.'s (leg braces). I asked the nurse if I could remove them because he can be quite uncomfortable with them while laying down. I noticed that when I mentioned "a.f.o.'s"  the nurse that was caring for the patient in the bed next to Cody looked up at us. As I began removing Cody's shoes and braces the nurse said, "I am familiar with those....we've had them for my son." I asked her how old her son was and she replied, "He passed away four years ago." I felt badly for her...I made a weak (and sincere) apology. Later, she tapped me on the shoulder and said, "I don't want you to feel bad... seeing you and your son, today, was a very good memory for me." We both had tears in our eyes. I don't even know her name. It was such a reminder to enjoy every day as best you can in spite of the challenges.

My second perspective check was on the fourth of July. We were celebrating at our home with extended family. We also had very special guests; our neighbors that live almost a mile on our road. I had never met them before but in recent months had become very acquainted with them. With the devastating tornadoes that broke out on April 27th, 2011....these neighbors (along with many others in our community) loss their beautiful home. They all survived but not without injuries. The wife/mother sustained broken bones and collapsed lung. They shared the harrowing  details of the moments before, during, and following of their home being obliterated  around them.

Cody recovering nicely with his pal, "Bunny."



Our neighbors' home the day after the tornado.

 They had dropped by because they were beginning the process of choosing a house plan to rebuild; they were interested in building a home similar to ours. As I gave them a tour of the house I explained, "please excuse the mess; we have a lot of company right now." She responded with, 'You should see my house. It looks like a tornado hit it." Her husband than said, "God downsized us." I love people with a sense of humor! Surely they will grieve the "things" that they loss and their beautiful home but they have such grace in their circumstances. Less than a mile, there were four deaths in a home that also took a direct hit. The only survivor was an eight year old boy that was found about 1/2 mile from his grandmother's house. Life is fragile and beautiful.