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Sometimes, when running errands, taking a walk or just enjoying a rare quiet moment, I find myself overwhelmed with a sense of loss and grief. My beautiful and most precious three year old granddaughter, Chloe earned her wings this past December 10th. Chloe was such a gift to our family, but after suffering a critical seizure that left her in a coma with decreased brain function, hope that she would bounce back again faded.
Any time I could be with Chloe was special to me. As I would draw her close to me to snuggle, I would always greet her with a whisper “Hello Darlin’, it’s Mawmaw.” I would make the Sign of the Cross on her forehead and say a Hail Mary, thanking God for placing this beautiful child in our family.
Caring for Chloe was no small undertaking, and I loved being one of the ones that her mom and dad would trust to care for her when they were not with her. It could be overwhelming to know that Chloe could average a 100 seizures a day but it all came down to cuddling her, kissing her sweet face and talking lovingly to her while patting her back. No matter how difficult it was to watch, the seizures would have to take their course.
We were always on alert; it was so important to know how to suction her if she started coughing or choking, how to add ice packs if she spiked a fever, or how to hold her to help ease her breathing. Her parents knew every medicine she took and when she needed them; her medications and food for her feeding tube were always prepared ahead of time. I wasn’t really on my own though, Chloe’s big brother was usually close by if he was needed. I loved and treasured every moment with my youngest grandchild.
Those were cherished memories for me, but I can remember walking to my car after my visits with an overwhelming sense of heaviness; my body was so drained. I knew that with all the emotions I felt after my visit, nothing compared to what her parents experienced each and every minute of each and every day of her short life. They tried to relieve her pain and suffering, and because of their love for Chloe they never complained. If love could have saved Chloe, she would still be here. We all adored this beautiful child.
When I think back to all the challenges we had in order to keep Chloe well and comfortable, I realize how hard Chloe was fighting to stay with us. She made you never want to give up! We did not know from one day to the next what type of day Chloe would have, but we were all painfully aware that any one of the seizures could take her life. We watched her suffer, but how much did she feel? How difficult was it for her to have the suction tubing put up her nose and down her throat throughout the day? We know one thing, she did not like the oxygen in her nose; she tried to pull it out when she could get her sweet little hand up to her face. She was such a fighter, but so were her parents. I watched with great pride how Chloe brought out the best in both of them, her big brother and, quite frankly, in each of us.
Our sweet girl loved to snuggle. She could not be placed in a baby bed and left; she had to have 24 hour care for fear of choking. Our hope had always been that if the seizures could be reduced or stopped then maybe her little brain could rest. We would all be able to just love her, and maybe her pain and suffering would subside. I believe in miracles, and we all hoped for one but we all understood that Chloe would always be severely special needs. Her daddy always said he would gladly play tea party with Chloe for the next 40 years.
The road that led us to the fateful day on December 10th, 2014 was hard fought after a severe seizure when she was two (not so unlike the one that put her in a coma), Chloe was sent home to die with hospice. When she was one, Chloe forgot how to swallow. She couldn’t eat, required a feeding tube, couldn’t breath on her own, required 24-hour oxygen, couldn’t talk, sit up or walk. She had little facial expression and a rare smile was a true gift.
Our expectations went from milestones to moments. Sometimes her eyes would focus on you so clearly that you just knew she was in there. And then the seizures would take her. Chloe had such a powerful presence, I often felt that looking into her eyes must be what it would be like to look into the eyes of God. She was pure love and she taught us all the true meaning of unconditional love.
Eight short days after Chloe was born she was diagnosed with Hemimegachepaly and Hypomelanosis of Ito, two extremely rare conditions that result in a form of epilepsy which cause intractable seizures. Sadly, there are no FDA-approved seizure drugs that could stop her seizures. And here is where our journey began. Chloe had three birthdays, 1145 days, and suffered over 75,000 seizures.
I didn’t know it then but I was setting off on a quest that would align friendships and influential people that would join our mission to help Chloe and children like her. In 2014, our family and friends raised our voices to advocate legislators for both state and federal legalization of medical cannabis oil. What may seem like a simple statement has become my mantra: “Medical cannabis is medicine! It is a non-intoxicating oil that has been extremely successful in the treatment of children with intractable seizures in Colorado where it is legal.”
Her dad always called it “Chloe’s Chance,” but most know it as “Charlotte’s Web Hemp Oil,” or high-CBD cannabis oil. The Tennessee Medical Cannabis Oil bill passed unanimously last April. This past June Chloe and our family were invited to the ceremonial signing of the bill with Tennessee Governor Bill Haslam.
Unfortunately for Chloe and other children like her, the Tennessee law is permanently delayed due to Federal red tape and regulations. It will be difficult to introduce new legislation or amendments until Federal law regarding cannabis is changed. Chloe didn’t get a chance to benefit from the medical cannabis oil, but we continue to support and advocate for the “Charlotte’s Web Medical Hemp Act” and are proud to take part, in Chloe’s memory, in the February 9, 2015 National postcard campaign by the Parents Coalition for Rescheduling Medical Cannabis to mail postcards to First Lady Michelle Obama. We are using the hashtags #stoptheseizures and #wedoitforChloe to bring attention to this important effort.
I hope that Congress may now recognize and consider the pain and suffering of special needs children across our nation diagnosed with intractable seizures. Maybe now they will listen to these brave parents and take action to change laws that could save so many lives. Did you know that there are over 3 million patients diagnosed with epilepsy in the US, and there are no FDA approved drugs that can stop or reduce seizures in more than 1 million of these patients?
By the time many of these parents find their way to Medical Cannabis it is often a last resort; it was a last resort for our Chloe. We were so close, sweet girl! Even though Chloe was prescribed methadone and phenobarbital twice a day for most of her three years along with a cocktail of other drugs with life threatening side effects, her seizures continued.
I want to stop you right here, did you catch the part that our beautiful three-year-old was prescribed methadone? Doesn’t seem to pass the common sense test when you ask how politicians can honestly be worried about giving a child medical cannabis !
As you might be able to see I am a devoted grandmother and mother that has taken up the call to stand up for those that often times can not stand up for themselves. It breaks my heart to now whisper, “Hello Darlin’, it’s Mawmaw ” into the air. People often say “she is in a better place,” and I imagine a beautiful little angel with dark brown curls and big brown eyes sitting or walking next to me telling me she’s okay. But we just want her here.
And now as I close my story, I find myself walking with my son last June after the ceremonial signing of our bill at the Tennessee state Capital. My son said, “ Mom, this oil may not help Chloe, but it will help some other little girl!” Sadly there are other Chloes in our country, and this is why our family continues to advocate for legislation in memory of our beautiful Chloe. Won’t you join our fight for the other little girls and boys like her to find relief from their pain and suffering?
Please contact your Congressman and encourage them to support legislation that will help these children and legalize Medical Cannabis. Help us be the voice for all special needs children who have no voice!
Readers can follow the Parents Coalition for Rescheduling Medical Cannabis on Facebook for updates on this mail-in effort and photos of some of the other brave children and families taking part in the #stoptheseizures campaign.
Photo Credit: Gail Grauer and family