Friday, May 11, 2018

Celebrating an Unconventional Beautiful Mother's Day

The Mother's Day weekend began early this year.  On Thursday afternoon, after wheeling Cody into the house from his school bus ride home I noticed a gift bag hanging on the side of his chair. I had a heads up because his teacher had texted me earlier in the day that they were working on Mother's Day gifts in class. I held up the gift bag decorated with stickers and asked if it was for me. Cody got extremely excited. I asked him if he wanted me to open the gift even though Mother's Day was days away. I held up one hand for "yes" and the other for "no." Cody was so enthusiastic when he selected yes he was rocking in his chair. I first opened the card that read Happy Mother's Day on it and he laughed. I then had him help me pull the tissue paper out of the gift bag that revealed a picture of him on an easel. The pure joy Cody displayed in giving this gift was unlike I had ever seen. His pure joy in giving the present is my favorite part of his  gift. I may or may not have teared up.

From the time I was very young and even before I received my first beloved "baby alive" doll, I had it in my heart of hearts to be a mother one day. It's been 24 years since I celebrated my first mother's day with Hannah. This is my 17th year celebrating with Cody as well. 

If I had seen into our future what my motherhood role would look like I would have had a great deal of trepidation. This is not the conventional ideal I had envisioned. Those early days were filled with uncertainty of Cody's survival, then developmental delays, a diagnosis followed, therapies, surgery, his pain, seizures, ER visits, balancing motherhood duties and often being concerned of the time/energy/resources required with one child over the other. I'm grateful I never had that glimpse into the future because it would not have shown the whole picture. Both of my kids (now one is an adult) are a perfect addition to our family. 

No one lives out a complete "conventional" picture of what they envisioned for motherhood/parenthood. Those glossy pics in the parenting magazines I read when I was first pregnant with Hannah weren't completely accurate. Motherhood for any child (typically developing or not) includes both the beautiful aspects as well as challenges for each unique child.  I often say that parenting is not for wimps. I think that would make a great t-shirt. All children have "special needs".  

I wish all of you moms a wonderful Mother's Day every day of the year!! 

One of my greatest gifts from one of my greatest gifts. 

Tuesday, June 9, 2015

The Heart Break and Mending of Medical Negligence

I've started and stopped writing this post numerous times. I'm not sure that anyone will ever read it but it's cathartic to write. There have been days that I felt that the weight of this would be the making or breaking of me. I've determined it to NOT be the breaking. The cause of Cody's disabilities was the medical negligence of others.  I can't be specific in that regard for legal purposes.

Parents of special needs children come by their role because of a myriad of causes. Some are by a genetic disorder, hereditary factors, environmental causes, deficiencies, accidents, and many are unknown. Regardless of the origin, it's equally difficult to accept. The fact that Cody's cerebral palsy diagnosis could have been easily prevented is a part of our family's journey. It's a journey shared with other families of children with special needs as well.

Here are some lessons I've learned (and continuing to learn) along the way:

1. Forgiveness is the most difficult and necessary tool in (any) life. I have to consciously and repeatedly forgive those responsible ESPECIALLY in those moments and days that are most challenging. On the days that Cody has had a seizure, experienced severe pain/a difficult medical procedure, planning his future, been slighted by others... it's hard to not feel the injustice for our boy and family. I confess that some of these difficult moments have been met with tears and anguish; that's when I've realized the bitterness that can incrementally creep into the heart, mind, and soul.  This quote by Corrie Ten Boom speaks volumes, "Forgiveness is an act of the will, and the will can function regardless of the temperature of the heart." Ultimately, God has extended his forgiveness to me through Christ. Who am I not to extend forgiveness and grace when I've been forgiven of so much?
Colossians 3:13  ~ "Bear with each and forgive one another if any of you has a grievance against someone. Forgive as the Lord forgave you." 

2. I've discovered an empathy for others I never knew before. Injustices have occurred since the beginning of mankind. I've known people throughout my life that have been victims of abuse, violence, deceit, abandonment, etc... No one gets through life unscathed of some misfortune. People have suffered  because of their belief systems, ideologies, politics, race, and just for existing. I've realized even more since experiencing this with Cody that compassion and empathy should transcend the differences that we have with one another.

3.  Praying for those you have a grievance against makes it impossible to be bitter towards them. This was difficult for me at first; it's become the most liberating. I truly wish those well that have impacted our lives in this way. I pray that they can live in peace in regards to the events of that day and move on with their lives as we do as well. Nothing good could come from holding on to grudges. It only robs you of the best life you can live for yourself and others.

4. The blinders have been lifted and with that we have gained wisdom. Before our experiences,  I had  believed (almost blindly) that a person of certain medical position was nearly flawless. The truth is no one is perfect. Everyone makes mistakes but granted there are some mistakes that can alter the lives of others profoundly. We gained a wisdom from this experience to respect other's opinions but ultimately you are the greatest "expert" in regards to your loved one. If you have an instinct about yourself or another as a patient.... advocate, advocate, advocate! Your instincts may be proven or disproved but it should be pursued.

5. Living in the past blinds you from the good and beautiful in the present.  Acknowledging the negligence and dwelling on it are two very different things. Dwelling on the most painful life experiences can breed depression (I've been there), anger, and bitterness. I can't function to the best of my ability in helping Cody fulfill his potential if I'm living in the past.
"One day at time - that is enough. Do not look back and grieve over the past for it is gone and do not be troubled about the future for it is has not yet come. Live in the present and make it so beautiful that it will be worth remembering." ~ Ida Scott Taylor

Cody's smiles are awesome. 

Saturday, November 8, 2014

PTSD and The Special Needs Parent

It has been 13 years but I often find myself still on that hospital bed. I have dreams and flashbacks.  I suddenly feel claustrophobic; I find it hard to breathe. I'm frightened for my son and myself. I want to speak; I want to SHOUT but I lose consciousness.  I awaken to discover myself in the hallway being transported into the operating room.  I've lost a great deal of blood. My thoughts are of Cody, the son that I have yet to see ... our baby that his dad and I named months ago. I awaken as the the doctor is beginning the caesarean. The scalpel make its initial slice into my abdomen; I can see the reflection of this in the doctor's glasses. In and out of consciousness, I begin to pray. I pray loudly for Cody.

He is rushed to the right hand corner of the room. There is no crying. I can only hear the hurried actions of hospital personnel. Minutes tick by and still nothing. Finally, I hear a faint cry. I don't know how much time transpired but he is then held next me to my on my right hand side. He's all bundled in a pink, blue and white generic hospital blanket. I don't remember the person holding my son; I can only envision the hands and arms. I look into his beautiful face. He looks so much likes his older sister. His eyes are open. I again lose consciousness.

It's PTSD - post traumatic stress disorder. It's often spoken of in relation to veterans and the battles they have been a part. For more info on PTSD:    There has been a great deal of research that has found parents of children with special needs have stress levels comparable to those in combat. I may not have believed that if I had not experienced it for myself.

The symptoms have never gone away completely but the severity of living with that day comes and goes. This is the second period of time that it has been most difficult. I believe the reason stems from some challenges we are currently facing and as Cody is transitioning into his adolescence.

I'm not sharing this for sympathy but to share the story to hopefully be a help to others. I encourage any parent dealing with depression, anxiety, PTSD symptoms that you are not alone. If you are struggling, seek help. Help can come from a myriad of resources. Personally, therapy has been a great help for me. Also, for me it's a personal relationship with God.

As our children with profound disabilities age, there are great joys but also grief mixed in as well. It's a different kind of grief. It's heart wrenching  at times to see Cody struggle with his body. It's also a great source of encouragement that he never gives up.
My two children in a candid pic. I'm a grateful mom. 

Monday, June 16, 2014

Exceptional Fathers

Yesterday countless people celebrated their fathers and father figures.

My Dad was the only male in the household of three daughters and our mother. Many of our pets were even females. He was grossly outnumbered! I distinctly recall a phone call I had made to my Dad when Cody was about twelve months old. It was apparent to me that he was having significant developmental delays. I had taken him to his pediatrician and also had a couple physical therapy appointments. They were all cautiously optimistic in spite of his obvious delays and traumatic entry into the world. My instincts were telling me that he would have lasting effects from his initial brain injury. I was prayerful and hopeful that would not be the case; I believe God was preparing me for what was to come.

I was experiencing a great deal of trepidation of Cody's possible prognosis. I picked up the phone and called my dad. The call went something like this:

Dad: "Hello"
Me:  "Hey Dad." My voice broke because I was on the verge of tears. Sensing that I was on the verge of tears... Dad quickly says,
Dad: "Your mother is not here." (That memory makes me laugh).
Me:  "I know. I think that Cody is going to have some significant issues with his development, Dad. I believe that you will tell me not necessarily what I want to hear...that everything is OK. I just really want to hear from you, my Father, that you believe that I can do this." (serious sobbing)
Dad:  Silence. I'm beginning to wonder if he was still there. He answers with a firm voice,  "I don't have any doubt, Ann Marie. You and Scott can do this." 
That was a direct quote. It's been 12 years and I remember like it was yesterday.  I needed my Dad in that moment to tell me something affirming. He was an extension of my Heavenly Father as well.

Dad has become a great source of love, fun, and encouragement for Cody. He selects the name "Grandpop" more than any other on his communication device. Cody is hands down Dad's greatest fan!
A typical Grandpop/Cody moment. 

The  2nd name that is most widely recited on his device is "Daddy." Scott is such an amazing support to his boy. Scott has become his arms and legs in hitting the ball and running the bases on his Dream League baseball team. He has also become his arms and legs in life. He works unbelievably hard to modify sporting activities so Cody can take part to the best of his ability. Cody may be non-verbal but the second he hears the door open when Scott returns home he communicates clearly that he is thrilled for his Dad to be home.
Father & Son

The Dads, Grandfathers, Uncles, Father Figures are often the unsung heroes. The impact they make on children, particularly in special needs children's lives, are beyond measure to the entire family. So thankful for these exceptional fathers for their exceptional kids.

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.