For anyone who knows me personally, knows that I capture every moment I can, on my camera phone. I’m proud of my kids and I enjoy sharing their accomplishments with family and friends via social media.
Recently I went back through my over 1500 photos. It was like watching a movie of the last year, evoking an array of different emotions. Pictures are the evidence that prove our children are growing up before our eyes. In a year I seen not only physical growth in my kids, but also emotional growth. My son is maturing from my little boy into a fine young man, with a big caring heart. My girls are not babies anymore. My eldest daughter is developing into a strong willed, yet very compassionate young lady and our youngest daughter has continued to inspire us with her tremendous gifts of strength, courage and determination, all the while sharing her contagious smile with the world. I couldn’t be a more prouder Momma!
Reminiscing has strengthened my appreciation in being a parent, that much more. Sometimes our lives can be filled with so much distraction and chaos that we tend to forget all that we have been blessed with.
Today I cleaned my house, not because it needed it, because that’s what I do when I’m stressed out and feel that parts of my life are out of my control. Today we meet with a gastrointestinal surgeon who will operate on our daughter next week.
Our daughter, Olivia has had severe difficulty with digestion since birth and we have been told it is attributed to the fact she has Cerebral Palsy. Olivia’s stomach doesn’t empty properly. It will hold food in it for hours after she has eaten. This usually causes her to vomit frequently and as a result, she has trouble gaining weight. We have tried everything over the last 4 years. We have sat down and worked with feeding therapists and have tried every recommendation they suggested. Nothing works! So now, after 4 years of struggling, Olivia has been deemed “failure to thrive”. This means she is dangerously underweight for her age and height. If she were to get sick, her body wouldn’t have the reserves necessary to help fight off any germs. We have been guided to consider Olivia may need a G-tube for feeds.
This decision process killed me emotionally. My husband and I struggled if this was the right choice for her. We questioned ourselves, did we exhaust all possible avenues? We struggled with this decision for over a year. After tirelessly exhausting all professional views and speaking with other families whose children have G-tubes and the benefits they’ve seen it do for them, we decided to move forward with it.
So today we meet with the surgeon. I am sick to my stomach with stress. I know this is the best for her, but it’s the one more thing to scar her beautiful little body. It’s the one more time she will need to be sedated. It’s the one more time we call a hospital our home for a week. It’s all of that and sadly I know it won’t be the last.
Everyday I perform a juggling act. Obviously not the kind that performers portray in circus acts, the type I’m talking about is the balancing act of making sure my older children get as much attention as their sister. When you have a child with special needs, much of your time is dedicated to their needs.
Most people don’t understand this stress. Usually when I speak to others about this dilemma they respond with, “oh I wouldn’t worry, they love their sister, they understand”. Well here’s the thing; yes they love her and they understand, but it doesn’t mean that their feelings are not real and don’t matter. They matter a lot!
My husband and I devised a way to spend more one on one time with them. We know this time is precious and important so we call it Mommy/Daddy time and they each get a night with either myself or my husband. My daughter loves these, especially the outings with her father; she calls them Daddy Dates. Sometimes we will do lunch or dinner at their favorite restaurant or maybe we work on an activity of their choice. These quality moments have produced a greater appreciation for time spent together. From this, our kids speak more openly with us and our family time together has become richer. Our children feel a greater, more secure sense of importance. They knew and always felt our love, but they honestly felt less important than their sister. We needed to reinforce, through our actions, that this was not the case and that all of them were of equal importance to us.
I have never seen a kid so ready for school, like Olivia was on her first day. I on the other hand, not so much. Call it the Mommy pains of having my last baby go off to school or the fact I wasn’t ready to let go. I wasn’t ready to share her with the world. I wasn’t ready for someone else to share my role with her for eight hours a day, five days a week. For the first time I could see my baby girl growing into a big girl ready to take on kindergarten and that scared the hell out of me. It was happening, time was passing by and a new chapter was beginning in our lives; and I was reluctant to accept. I even contemplated with my husband to hold her back from going for another year. It took time to realize Olivia needed to experience this next step, we couldn’t keep our little girl in a bubble for the rest of her life. She needed to have the opportunity to spread her wings and we needed to give her the space to do so.
So many worries filled my thoughts. Would she be understood? Could they understand and interpret her nonverbal queues? Would her peers accept her and love her the way she always has been with us? What if she became scared or nervous, who would comfort her? Would she be teased or mistreated? Every possible fear and scenario my mind could conjure filled my head.
My husband and I sat and spoke with other parents of special needs children we knew. Many of them offered fantastic advice and the common point each of them shared was it was the best decision they had ever made. Many of their children blossomed in school. Being around others their own age, the kids felt confident and began showing signs of development they hadn’t shown before. Not a single parent said to us that it had a negative impact on their child.
Olivia started school in September and never have I seen her so happy! She has made many friends who love, understand and completely accept her for her. She has an outrageously wonderful education team. These ladies are caring, kind, compassionate and have an abundance of patience and time for not only Olivia, but all of her classmates. I give them an astounding amount of respect for the jobs they do. I appreciate them more than they will ever know. I value the time they take in writing notes in Olivia’s agenda so I can feel a sense of not only how her day went, but also to hear about the “funny” happenings of a group of kindergarteners. I appreciate the few moments they take in the mornings to speak with me about how her night/evening went or how they will go out of their way to show me what she has been working on. Then there is the school staff who went above and beyond to make Olivia’s transition flawless. They will never understand how awesome that made us feel to know so many individuals cared so deeply for our child.
Olivia, like I said is loving every minute of being at school. From the many greetings she gets while we pass through the halls to the many students who enjoy approaching her for a hug or fist pump. I never thought I could share her with anyone, but now I see this is her purpose…to share and spread love.
Although it was a difficult step to take, I’m so happy we took this step together, for her.
When we began our special needs journey, I remember how strongly the sense of loneliness swept over us. In that moment you feel there is no one else on this planet that could possibly feel or understand what you are going through. It’s just you, alone in this moment, with the diagnosis. The reassurances from your family that are meant to lift you up, hold minimal weight, and you just continue to feel low and unable to breathe a peaceful breath.
For this main reason, I started this blog. I want new parents who are beginning this journey to know, you are not alone. I have experienced what it feels like to call a hospital your second home, to listen to doctors and specialists debate theories on what your child’s future will hold, to countless hours spent doing therapies with your child, hoping something you do will alleviate the pain they are struggling with. My child may have a similar or different diagnosis than yours, but the constant that remains are the feelings we special needs parents share. There will be moments of sorrow, frustration, anger and helplessness, but there will also be great moments filled with joy, happiness, peace, a greater appreciation for what a day can bring, and above all, hope.
Our journeys are never easy, you will find some steps along the way to be challenging, but you will discover a strength within; you never thought possible. You will find it hard to except help from others because you’ve developed an “I’m tough enough, I can handle it” mentality, but remember we are not made of steel, we all have our breaking points. Allow those that care about you to help, believe it or not that willingness is a true characteristic of strength.
You will soon come to realize there are many others walking this journey that are only too happy to help you navigate through yours. Just remember you are not alone.
The day our therapist recommended we get a wheelchair for Olivia, I’ll admit, I took great insult. I even responded saying, “We haven’t given up on her walking, how could you?”
It took time for me to understand that getting Olivia a wheelchair didn’t mean we were giving up on her, we were giving her more options to experience independent mobility.
Cerebral Palsy affected Olivia’s ability to move, tremendously. Her muscles didn’t want to cooperate with the rest of her body. Each time she attempted to gain control of her head, neck and trunk, the lower part of her body wanted to do something else. It became exhausting for her to try to navigate her body’s movements. We could see how frustrated she became, she so desperately wanted to move, to crawl…anything…just move!
I realized part of me was being selfish and in denial. The wheelchair symbolized change and difference and part of me wasn’t ready to accept that. I was more worried what others would say and how Olivia would be judged. Like I said, selfish motives.
Seeing Olivia in her wheelchair for the first time was fantastic. She was so happy and looked very comfortable. She was the princess riding proudly in her carriage, and man did she turn heads! People couldn’t help stop and say hello because here was this beautiful little red head, wheeling past them, with an enormous smile on her face. So many people commented and told her she had the prettiest red hair and the coolest looking chair.
Today, Olivia still uses her wheelchair among other types of equipment, each piece helps her in different ways. It never gets old for me, seeing the look of pride, determination and utter joy in her eyes from achieving a sense of independence all because she had the help from one of these devices.
Olivia loves school! You can tell by the huge smile that comes across her face when you tell her, “today is a school day!”. Her entire mood becomes upbeat and giddy, building with anticipation for the moment she sees her teachers and peers.
At the end of each school day, when she is wheeled to greet me at the entrance, Olivia begins to burst with smiles, happy cooing and sounds indicating to me she had an AWESOME day! This moment is always bittersweet because I’m thrilled she is so outrageously overjoyed, but I would give anything to have a moment where her words came gushing, excitedly telling me, “Mom, today was the BEST!”
It’s these moments I find most challenging to accept CP. It’s a constant tug of war within my heart. This condition robbed my daughter of so much and part of me hates it with every cell of my body, yet it’s a huge part of her. It doesn’t define who she is, but it’s still part of her and you can’t just love some of your child, you love your child entirely.
I love Olivia more than life itself and it’s this love for her that overcomes the angst I feel towards the CP. The joy she has brought to us and those around her is something beyond words.
I became a special needs parent on the first day of my daughter’s diagnosis. The moment the doctor spoke the words, “Your daughter has Cerebral Palsy” my journey began. No one is ever prepared to become a special needs parent. It happens in an instant.
When I was pregnant, I didn’t dream of having a child with health problems and physical limitations. Who does? Like everyone else, I dreamed of a child who would have every opportunity the world had to offer. I suddenly felt as if I was falling down the Rabbit Hole into Wonderland and was terrified of this unfamiliar new reality. I didn’t know what lay ahead for my daughter.
Getting stuck in the “what ifs” of what the future will hold, is a common mistake we make as special needs parents. The paths our journeys take quickly teaches us all that matters is now, and living in the present. It’s the once obstructive hurdles that were difficult to overcome, that one day turn into our child’s achievements that truly educate us on the importance of patience and time and teaches us a greater appreciation for these gifts.
My fears no longer exist and I don’t get hung up on the “what ifs”. There are things I don’t always know, but that’s ok, because I believe as our journey continues, we will be revealed these answers. I celebrate in what my daughter has overcome and I look forward to how she will impact the people and world around her. She has taught me courage and to appreciate today. I no longer feel as if I’m falling down the Rabbit Hole, for the first time, I feel two feet firmly planted and looking upward to whatever the future holds.
“Why can’t me and you hide Daddy, and Olivia come find us?”
Hearing this innocent question, asked by my oldest daughter to my husband before a stellar game of hide and seek, stopped me in my tracks and rendered me speechless and this why…
Kameron, our oldest daughter, completely understands her sister has limitations. She understands her sister can’t walk and therefore relies on a wheelchair for mobility, outside of our home. We have spoken freely about Olivia’s disability to both of her older siblings, ever since she was diagnosed with Cerebral Palsy. If they had questions we provided age appropriate answers. We wanted them growing up loving her for who she is, not defining her based on her body’s limitations. They were never discouraged from wanting to hold her as a baby and we encouraged them to always find ways that would allow Olivia to participate in games.
So why did my daughter Kameron ask if her sister could seek her? Because although Kameron understands her sister’s disability, she recognizes Olivia’s ability and automatically assumes there isn’t anything her sister can’t achieve…and this completely took my breath away.
Today my daughter held a marker in her hand. So what’s the big deal? SHE HELD A MARKER IN HER HAND! She held it…I didn’t hold it for her, she did it on her own! She grasped her finger and thumb around the base of the marker and didn’t drop it, she held it.
This is a HUGE deal!
When Olivia’s brain suffered damage at birth, healthy pathways were destroyed. Her brain didn’t function normal after that. Therefore, the simple everyday tasks we take for granted, like holding and grasping a marker were thought to be impossible.
Countless hours and years were spent putting a marker in her hand, folding her index finger and thumb around it, gently applying pressure, and repeating. Each time her grasp wouldn’t hold and the marker would fall. But that was ok, because each time we repeated the task, her brain was receiving the information and developing new pathways to store this information.
Today, her brain remembered and she held the marker.
These moments…when something clicks…are miraculous moments!
Olivia is four years old and for the first time, held a marker. This is why I look at this accomplishment and tell myself, “today she held a marker, tomorrow she might write her name”. Tomorrow might be a day, a month, or ten years from now, but she has achieved that first step. Today my daughter held a marker and that is the best!