Wednesday, November 27, 2013

Thankful For Our Abnormal Normal Life

Since we are just hours away from Thanksgiving 2013, I wanted to share thankful thoughts in being Cody's mom.

I'm thankful for the countless smiles and laughs. The more that I am around Cody and others with profound disabilities, I'm struck with the pure joy that is exhibited. There is an authenticity in their love, happiness, and a contentment in the present with little regard for the worries of tomorrow. I would love to emulate any or all of these more in my own life!
Here's an example in the fun that is Cody. I showed him how to take a "selfie." You don't have to be verbal to communicate FUN!

I'm thankful for the peaceful moments. Having experienced trauma from the beginning with Cody and subsequent medical issues along the way, it makes me even more mindful and appreciative of the peaceful moments in life. I don't think I really relished in those times before. It is a gift.

I'm thankful for a sense of humor. An example is one day after a tough doctor's appointment, Cody and I went to one of his favorite fast food restaurants. A young boy came up and pointed and asked, "What happened to him?" I typically welcome those inquisitive questions but that moment wasn't a good time for me. I answered, "skiing accident." The boy seemed satisfied and walked away. Cody and I both laughed. Do I feel bad? yes, slightly but I know God understands.

I'm thankful for all the fabulous people we have met along the way that we may not have met otherwise. We've come in contact with therapists, teachers, specialists, doctors, other parents of special needs children, children and adults with disabilities, etc... Many of these folks have enriched our lives greatly.

There are countless others that I could list here but most importantly, I'm thankful for every moment as Cody's mom.

Cody allowed me to get in one of his selfies.

Happy Thanksgiving to all! The longer I live the more I realize that it's more than a historical holiday but an opportunity to remind me that thankfulness should be a mentality, a way of life.

Cody and his dad at a recent family get together. Scott was helping him stretch his legs. P.S. Go Heels!

Saturday, March 23, 2013

CP Awareness Month ~

This is a significant month. March is  Cerebral  Palsy Awareness Month and the 25th is Cerebral Palsy Awareness Day.  March 20th is also our boy's  birthday. It was by far the most challenging day in our family's life as well as one of the most beautiful. We were given the gift that is Cody.

Our family went to a local restaurant to celebrate.  I noticed a gentleman seated behind our table looking at Cody. He had a critical expression and then shifted his chair to face the opposite direction.  Because of his poor motor skills, Cody typically has difficulty controlling his saliva. Eating and drinking are also quite messy. We should own stock in a napkin company!  The man that had shifted his chair seemed to be disapproving of Cody's table manners. 

Cody seemed completely unaware but I was hurt. I remembered reading this past summer of a family in Texas that were frequent patrons of a local restaurant. It was made known to them that a family that had been seated in close proximity had requested to be moved to a different table because of their child with down syndrome. Apparently they were "uncomfortable." 

In sharing our experience with my sister the following day, we discussed how the world lacks compassion and empathy for what it does not understand. I jokingly texted her later that there was a good chance the disapproving glare may have been as a result of my poor table manners. It's all about perspective: for every negative look, comment, reaction today and in the future, there are countless positive reactions. It's always easier to remember the bad instead of the good in any given circumstance.

Cerebral Palsy may be a part of Cody and our family's lives but it doesn't define him or us completely. Everyone has strengths, weaknesses,  and "handicaps" both seen and unseen; we're all so much more than we appear.  Happy CP Awareness Month!

I love this! 

Monday, March 26, 2012

Extraordinary Siblings

I heard laughter coming over the monitor. My teenage daughter was in Cody's room. She was helping me out by getting him ready for bed. I looked at the video monitor. It showed  Cody, now dressed in Toy Story pajamas, and Hannah laughing. They were both lying on his bed. Cody was teasing Hannah by trying to take off her glasses.

Their sibling relationship isn't  typical. Cody and Hannah have never fought, bickered, tattled on one another. Cody never chased Hannah around the house with a daddy long-legged spider (like i once enjoyed doing to my older sister... love you, Lisa).

Hannah was seven when Cody was born. A few weeks before Cody's birth, Hannah and I went shopping for her baby brother. She selected a Carolina blue (shout out to UNC fans) outfit, and a stuffed rabbit to give to Cody. She was excited. We all were!!

Cody experienced a traumatic birth with a significant amount of oxygen deprivation. He was placed on a breathing tube. Several doctors were not hopeful of his survival. Hannah was with close friends and family while Scott and I were at the hospital hoping and praying for our boy. I talked with Hannah on the phone but we waited a few days before she came to the hospital. In all honesty, I was hesitant of her arrival to the  hospital because we were so uncertain of Cody's prognosis. I didn't know what to tell her. I didn't even know what to tell myself.

After a few days, Hannah was brought to the hospital.  I sat across from Hannah, face to face, on the bed.  I had rehearsed in my mind how I would explain all of the happenings in recent days to my sweet girl. Those well rehearsed words failed me. I don't recall all that was said except that we all loved her little brother and he would be in God's hands.... no matter the outcome. We hoped and prayed that Cody would pull through.

I will never forget what Hannah did next. She moved closer to me and hugged me. As we hugged, she patted my back. She had never done that before. It made me chuckle a little in that she was suddenly comforting me. She then said confidently, "Cody is going to be OK."

We then walked down to the NICU so Hannah could see her brother for the first time. She had brought the little bunny that she had bought just a few weeks earlier. We put it in the corner of his incubator. As I held Cody, she spoke sweetly to her brother as she introduced herself to him. (I admit I am tearing up a little as I type this).

Hannah and Cody
Summer 2001

I realized in that moment that what was happening wasn't just happening to Cody, myself, Scott....but to Hannah as well. Cody's birth and life has impacted all of our lives profoundly.

Hannah's initial statement that Cody would be OK has proven to be true in many ways. Even though his cerebral palsy affects him in every area of his development, Hannah and Cody have never known anything differently in what their sibling relationship should be. In many instances that are difficult and/or challenging, children  have a greater capacity to adjust. As adults,  we can over-analyze and worry instead of just enjoying the present.

I've encountered many siblings of children with disabilities and/or chronic disease/conditions. These folks are in various age groups, child thru adult, and most exhibit a great capacity of compassion and empathy for others, particularly those that go unnoticed by most in society.

Cody attended an exceptional preschool years ago for  children with and without special needs.  We met so many wonderful families during our time at Siskin Children's Institute (   I've often reflected on a conversation that I had with one of the inspiring moms that I came to know. We were discussing our concerns that we had for our children without disabilities in that much of our time was devoted to our boys with additonal needs. She then told me about a conversation she had with her lovely daughter Emma who was close to Hannah's age.

Emma had asked her mother if there was a possibility that she would have a child one day with down syndrome like her younger brother.  Concluding that her daughter was anxious about the possibility of having a child of her own with down syndrome she told her that it was unlikely. Emma's response was disappointment.  That brought tears to my eyes. Emma saw her brother as perfect!!

I've come to think of children with special needs as extraordinary. They have extraordinary siblings as well! 

Cody and Hannah in a recent candid moment.

Tuesday, December 27, 2011

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

Saturday, November 26, 2011

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.

Friday, October 7, 2011

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).......

Friday, September 16, 2011

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