cerebral palsy

A Diagnosis – The Light in Scary Words

It’s not like I wanted my son to have a label that meant he really had a disability. I didn’t want my son to have any struggles. I wanted him to be healthy, strong, and independent. I wanted to read Babycenter with enthusiasm and get excited every week as I watched him meet the recommended milestones I had read about. I didn’t want to know the names of specialists and I certainly didn’t want a diagnosis for him, until I did. Until I felt like he really needed one.

Grey’s second pediatric neurologist finally ordered an MRI for him when he was three years old after me asking for answers for two and half years. (As I have mentioned in other posts, we proactively engaged Grey in early childhood intervention/physical therapy when he was six months old). The MRI showed Grey had a brain injury on the right side effecting white matter. I was told that the brain injury was insignificant and that the type of injury he had wasn’t correlated to a particular diagnosis. Hmmm… pretty sure any brain injury is significant. To me, it certainly was. It was the reason why my baby could barely use his hands, talk, and move…. and so on and so on.

The news of the brain injury was sad to hear. But, I already knew something was wrong and I was relieved to finally have a better understanding of what was going on with my Grey, as bad as that sounds. What was worse than finding out that Grey had a brain injury was still having a question mark as to what to do to help him. “Keep doing what you are doing” was all I got. That didn’t seem like enough to me. Even more frustrating was when I told Grey’s pediatrician (the one we have to use for insurance purposes) that he had a brain injury and I wanted a referral to a different pediatric neurologist who specializes in working with children with brain injuries, she told me that she felt it was more appropriate to refer him to a geneticist. Do genetics cause a brain injury? I reminded her that he already had genetic testing completed at Children’s of Dallas and the results showed no issues. Terribly, terribly frustrating.

So, I went back to Grey’s Texas pediatrician after finding a pediatric neurologist at Cook Children’s Hospital that I felt would be a good fit for Grey. Thankfully, the referral was made and accepted.

Grey loved the waiting area at Cook Children’s. He did not want to leave!

On February 13, 2018, my son was assessed by a doctor who took the time to actually observe him do functional activities – like run down the hallway, climb on a chair, step down from a stool, talk, high five, eat, etc. Dr. Jeffery McGlothlin listened. For the first time ever, I felt like a specialist didn’t look at my son with “it could be worse… I don’t have time for you… just go home”. He asked to review Grey’s MRI and then he said “your son has cerebral palsy”. He told us that it was mild and that considering Grey’s brain injury, he was doing remarkably well. He told me it was evident that we had gotten Grey help. He went through treatment options. He listened. He waited. He watched. And for once, I was speechless. So many emotions came over me, but I looked at my little boy and thought, “It is going to get better. We can do more for you now.” The clinical diagnosis now attached to my boy meant we knew which road to go on, per se, and though it was scary, I found hope and relief in knowing the right direction to turn. Having a diagnosis not only helps to define more appropriate interventions, but it also helps Grey receive services he truly needs in school and life to reach his maximum potential. Dr. McGlothlin, assured me that Grey would have access to resources he needs much easier after that day.

Cerebral palsy refers to a group of neurological disorders that appear in infancy or early childhood and permanently affect body movement and muscle coordination. Cerebral palsy (CP) is caused by damage to or abnormalities inside the developing brain that disrupt the brain’s ability to control movement and maintain posture and balance, according to the National Institute of Neurological Disorders and Stroke. The term cerebral refers to the brain; palsy refers to the loss or impairment of motor function. Cerebral palsy is very complex and can affect individuals differently. There are several different types of cerebral palsy. I still have so much to learn about CP.

I cried the most bittersweet tears on diagnosis day. When I called my husband to tell him about the interaction, it was almost as if we were talking about completing a marathon that I had started to feel was impossible to finish. I know that might sound very strange, but after asking for my son’s delays to be seriously observed and researching, wondering, worrying, and feeling absolutely frustrated for over four years, I felt immense gratitude when we were finally heard.

For any person reading this who is sharing similar struggles, I encourage you to not give up. Fight. Fight. Fight. Most caregivers are not doctors and we aren’t equipped to understand the clinical significance, reasons, or whys regarding the struggles our kiddos have, but we do have the opportunity to play one of the most important roles our children will ever need – advocate. No one knows a child like their caregivers. A doctor simply doesn’t have the time to see and observe all we do. It is our job to speak up, however that may be.

My baby is John Greyson Keese…. Greyson, Grey, Grey Grey, tiny tyrant (ha!), brother, silly goose, buddy – our ornery, precious, adorable boy. He is not cerebral palsy. He is affected by it. He is perfect to me.

With Love,

Sara

Source: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Hope-Through-Research/Cerebral-Palsy-Hope-Through-Research

Camp Grey Fitness Brunch

We are so excited to announce our first Adventure!

Join us for the Camp Grey Fitness Brunch! See below for details.

8:15-9:00am – Registration/VIP Access Purchase

9:00-9:40am – Warm-up and High Intensity Interval Training

9:40-10:00am – Yoga and Cool-down

10:00-11:00am – Brunch featuring the Rose’ and Mimosa Bar (sponsored by Post Familie Vineyards and Winery). Must be 21 years and up to consume alcohol.

Cost:

$25.00 – Fitness Brunch: Workout, Brunch (2 drink tickets for those 21 years old and up) and a Camp Grey wine glass

$35.00 – Fitness Brunch + VIP experience featuring Wine Tasting with Post Familie Vineyards and Winery President and Winemaker, Andrew Post. Sample four wines and learn the basics of wine tasting! (Must pay additional $10 at the event, where you will receive your VIP bracelet.)

Please bring sunscreen, ID, and a YOGA MAT.

All proceeds will be given to Stepping Stone School for Exceptional Children in Alma, Arkansas, which provides education, therapy services, care, growth opportunities and so much more to children and adults with developmental delays and disabilities. Camp Grey Adventures is not affiliated with Stepping Stone School for Exceptional Children, nor does Stepping Stone condone or claim liability for any Camp Grey Adventures events.

To purchase event tickets or make a donation, please click on the link below:

https://www.eventbrite.com/e/camp-grey-fitness-brunch-tickets-44848160054

Cheers to Adventures with a Purpose!

Sara

His Name was Grey: Riding the Waves of Mourning

I was sitting alone in a nail salon when a large group of people walked in. They sat in chairs, one by one, and took up all the seats across from me except one. They enthusiastically beamed as they shared with the staff how they were all related and were taking time to enjoy a little pampering together. I watched them, probably a little too much, as I was very intrigued….(yeah, I know that sounds creepy. I really don’t think I was being a creep, though. I hope not anyway. Just a little curious and unusually alone).

They had two small children with them. A little girl, who was probably just a few months old, and a little boy, who appeared to be about four or five. The little boy was visibly the most excited about getting a pedicure. He sat in the Hello Kitty chair that my little girl loves to sit in (okay, yes, she demands to sit in it) and grinned ear to ear when he told the nail attendant he wanted his toes to be painted green for St. Patrick’s day! He was giggling and loving all the attention his decision was giving him. He engaged with just about every one there in an innocent, happy childlike way.

He reminded me of my son. I think it was his eyes. He had the same twinkle in his brown eyes that I see so often in Grey’s eyes. He had a sweet, yet ornery demeanor, very much like my Grey too.

I sat there for about 30 minutes vacillating between exchanging glances with my fellow customers, watching Fixer Upper on the television above me, trying to ignore the conversation in another language that was going on loudly at my feet, and just closing my eyes to enjoy my own pampering. However, I couldn’t help but continue to observe the little, happy boy with green toes. And, then all of a sudden, without any warning, I started to cry.

An overwhelming sense of sadness came over me, as I began to think about how my little boy struggles to have the types of conversations and interactions that the boy with the green toes was having. I started to let the “what ifs” and “whys” flow in to my mind and found it very hard to shut those thoughts out. What if my little boy didn’t have one little part of his brain injured? Why does white matter have to matter so much? It is so small and yet it has such a big impact. Why did this happen to him? Why can’t I see my son have a life without the struggle of a brain injury? Why can’t I see my son ask for green toes and revel in the glow of healthy bliss while skipping and dancing around? What would my little boy be like without the injury that we still have no real explanation for?

And then I did what I have allowed myself to do only a few times before. I imagined a healthy Grey. No delays. No struggles to communicate or move or understand. I quickly shut those thoughts off, for they are too hard to bear and, I know, I know, they are not fair or helpful.

Mourning the loss of the son I had imagined- the baby, the boy and the man I dreamed of during those nine months of carrying Grey – comes and goes in waves. Most of the time, I have nothing but amazement and gratitude for the child I have been given. He teaches me, humbles me, and makes life absolutely more wonderful every single day. I watch him overcome challenges and am amazed by his accomplishments. I look at life so much differently, so much better, than I did four years ago, because of him. He fills my soul with joy and love and inspires me to be stronger than I ever imagined I could be. He helps me cut out petty, unimportant issues and focus more on what matters most to me. However, there are days, like yesterday, when I mourn the life I wanted for him, and quite frankly, for me to be a part of, as well. I feel angry and sad and guilty and hurt for him and for me. It is not fair that something happened to my beautiful, innocent boy that made life more challenging for him. At that moment, I felt robbed and as if someone had taken away so much from us.

One of the only other times, I expressed this mourning, I was with a group of cohorts in graduate school. We were learning about group counseling. We were asked to share anything that we wanted to discuss. Grey was about a year and a half at the time and I was struggling with not having more answers to the questions I had regarding his delays. He had been working with his physical therapist for about a year and was still not walking or talking. We did not know he had a brain injury at that time. I think I avoided most of my feelings about Grey’s delays for a very long time. And when I did feel sad, I felt guilty for being sad. When it was my turn to share I informed my classmates that my son had developmental delays, but that I didn’t know why or what to expect and that I felt very selfish for envisioning a life for him, that I wanted for him and for me, that he may never be able to have. I wanted to cheer him on and watch him play soccer as a little boy, play baseball with his friends in high school, go to college, have a successful career fulfilling a calling in his life, and watch him marry the love of his life and be a father, among many other happy events. I wanted to cherish, love, and be engaged in every moment with gratitude in each of them. I was sure I was going to be judged. I felt awful for feeling not having those types of moments would be sad. One of my classmates, a male, said he felt that me wanting those things for my son was not selfish, but that they showed I loved him. Other loving, precious comments flowed in. I have always held on to my classmates responses, as they mean so much to me. Don’t be afraid to share kindness… you never know how much it may mean to someone.

I have so much to cherish, it’s just that what I am cherishing is a bit different than what I originally imagined. I know I don’t have a choice in whether or not my son does or does not have a brain injury. We have this one life and these cards. These precious, beautiful cards and I have a million choices to make. So, I choose to make choices that give my Grey the best life he can have. I choose to surround him with people who understand his needs and love him. I choose to help him grow and learn to the best of our abilities. I choose to not discount him and always believe in his potential. I love when he tells me what he wants to be when he grows up… and I believe in his ability to do what he tells me he wants to do. I choose him always.

I took my perfectly manicured feet home and told my husband about the experience. And then I told him through my tears…. “his name was Grey. As they were leaving, the family said to the little boy with green toes, “time to go, Grey”. His name was Grey.”

There is a quote by Kiersten White that I love and makes me think of my Grey. “I’d choose you. In a hundred lifetimes. In a hundred worlds. In any version of reality, I’d find you and I’d choose you.” Yes, I would absolutely, wholeheartedly choose my baby. I think just about every parent feels this way. Being able to carry my children and bring them into the world to love, teach and care for is the greatest gift of my life. However, on that particular day I wanted him to experience life a bit differently. I have incredible peace and gratitude for being given my son exactly the way he is.

With Love,

Sara

When You Know

I recently had a conversation with a fellow mama who was worried about her little girl’s development. As I listened to her tell her story my heart began to swell and it took every ounce of patience I had to let her finish talking and not interrupt her by shouting out “ASK WHY and ASK FOR MORE”!

I had not talked to her about her child since the spring and at that time her daughter was getting tested and most likely going to receive therapy to address developmental delays. Over 6 months had gone by since that last conversation and little progress had been made in her child’s development, as well as the interventions her daughter was receiving. My new friend had been treated exactly the same way I had when I questioned Grey’s development; the way I know many other concerned parents have been treated.

She was told “every child is different”, “she will probably catch up” , “give her time”, “let’s not overreact”, and “not every child develops at the same rate”. All things I was told and all statements I would not accept because in my heart I knew something wasn’t quite right and we needed to know more.

I listened to her say that she knew that too. So, I gave her the advice that is the partial impetus for this project. Early intervention matters. It can be life changing. You have to fight for your child and be their advocate to give them what they need.

We love our pediatrician and think incredibly highly of him. We still drive a long way to see him despite him telling me the aforementioned statements above for four months when I was telling him that I really thought further attention was needed. I think he now knows my intent and takes me seriously. I at least feel like he always listens.

Most pediatricians see dozens of children a day. The time they have to assess and diagnose is limited and that makes it nearly impossible to observe a child like a primary caregiver can. Actually, not nearly, but certainly impossible.

I quickly learned that Grey needed me to be uncomfortable. He needed me to ask questions. He needed me to tell his story. He needed an intervention. He needed for his doctors to understand that he was not simply a laid back baby. And, so I did.

And our lives changed. When he was four months old, his doctor finally confirmed that I had not (well, at least probably not anyway) lost my mind and that a closer look was warranted. Grey’s doctor initially thought Grey might have had a birth injury, because his left side was barely mobile. Brachiul Plexus was the initial diagnosis that was later ruled out. Assessments were done. Meetings with Specialist ensued. Several hours on several days of me crying in the bathroom at work, in the shower, in the car, etc. while diagnosing Grey myself with the help of the internet followed. I wanted so badly to understand Grey better. I felt that he had to have a diagnosis to receive proper treatment. We had to do what was best for him and how could we possibly do that without knowing what exactly to solve or improve?

The first neurologist we met with was “one of the top pediatric neurologists in Dallas/Fort Worth”, according to a lot of websites and people we interacted with. He told us that we should not worry about Grey and to go home. He did not see any need for intervention. In my opinion, he treated me like an over-reactive, dramatic mother. He shamed me for comparing Grey to his big sister by 16 months, Bella, who met all of her developmental milestones early. (Thank God for big sister. She made it easier to identify delays. I wasn’t comparing Bella to Grey. I was being Grey’s mother and listening to him.)

I asked for a referral for Grey to see a different pediatric neurologist because I still knew he needed help.

I will discuss that interaction in another post. Long story short, we did not find out the reason for Grey’s delays until he was a little over three years old. We still do not know why that reason happened.

I do not want to imagine what Grey would be like had he not gotten early intervention services two and a half years before that. I wonder if he would be walking and talking yet. I wonder if I would have felt his sweet hugs or kisses yet. I wonder if he would have been able to pat his sister on the back like he did for the first time a week ago.

Something unexpected came from working with early childhood intervention services, which is advocacy. Unlike Grey’s doctors, his therapists do work with him day in and day out. They know him. They see his struggles and his strengths. They have supported me, encouraged and validated my questions and concerns. They have helped me question his abilities more than anyone and not in the way I thought. They see strengths that I sometimes miss because I am still fighting for answers, as much as I hate to admit that. They are my Grey’s heros. They are changing his life for the better.

If your child or a child you know is not meeting their developmental milestones, I encourage you to act as quickly as you can. No one knows your child better than you do. In my opinion it never hurts to ask questions. Hopefully, if you feel something is not quite right, you are wrong and are overreacting. However, if an intervention is needed, you do not have to be alone in your quest for the best life for your child. I am happy to help you in any way I can.

With Love,

Sara