When my daughter, Emily, was born she had complications right off the bat. She had her first suspected seizure within hours after birth. We were told she was very sick and likely the seizures were a result of it. We were given hope that her seizures would stop when the illness had been treated with heavy antibiotics over the course of 28 days. Well that reality never happened. Ten years later Emily still seizes as much today as she did as an infant. It wasn't clear to us as to why the seizures wouldn't stop with any of the 24 medications we had tried, nor the VNS she has implanted or even the Ketogenic diet which has been known to cause seizures to subside. However, now we know Emily has a gene mutation on her sodium channel called SCN2A. This mutation is responsible for the ugly seizures which we have never been able to control with any potential solution we have tried on her.
So, getting back to my point about the milestones and expectations we have of our children as they grow and develop.... As soon as I realized Emily's life was going to be complicated, I got rid of my book titled "What to Expect: The First Year." This book was full of milestones Emily never hit and likely never will. During the first years I became isolated with Emily only spending time with her in-home therapist and the therapist we also took her to at our local therapy center.
I had great dreams of doing Mommy and Me classes through our school district with Emily. After going to my first class with her and hearing the moms there complaining about and/or comparing with each other how far ahead of the curve their child was with their milestones; I quickly realized I didn't belong there. My child was literally a blob at this point. She didn't move, stared at the ceiling fan and/or lights, couldn't and wouldn't look at my face and basically cried all of the time. Emily was nothing like the other kids her age who were exploring and active and this broke my heart.
Enter: ugly crying, envy and jealously which became a thing for me. I wanted so badly for Emily to do something - anything!! My friends would tell me what their kids were doing and I would be happy for them, but deep down inside I was mourning the loss of what I had hoped for my own child. My hopes and dreams were shattered.
I thought that being a part of this amazing group of parents with children who had similar issues to Emily that my feelings of envy and jealousy would go away along with the ugly crying. But to my surprise they did not go very far. What the hell! Here I was surrounded by people who "get it" and their kids have similar yet different challenges too. I began to get angry with myself. Clearly this was my own issue that I needed to work through. Why can't I just be happy when another person's child walks, talks, or feeds themselves - especially when they have special needs? Why does this make me jealous? Why do I envy them so? Why do the ugly tears always want to appear when someone is celebrating HUGE milestones in their special child's life? Am I a bad person?
I feel like some of this goes back to the "What to Expect" books. Reading these books during my pregnancy I was so excited and since I am a planner by nature, I knew exactly what to expect from the time of conception through the first year. I was all set, all the way down to safety measure in place at home with a child gate and sock plugs!
It almost feels like the competition continues when you arrive for a well-child visit and you have to fill out the questionnaire of what your child can and cannot do yet based on their chronological age. Competition and complaining at this point appeared to be everywhere! In public I would overhear a mom complaining about potty training, their child not wanting to dress themselves or other mundane things when all I was doing was simply trying to keep my child alive and well. It felt like envy and jealously were all around me.
Well, fast forward nine years or so. I so thought this was all a thing of my past. Since my daughter is now 10 I though envy, jealously and ugly crying were done. I have accepted Emily for who she is and exactly how she is today. It has been my passion to love her unconditionally and provide her with the best quality of life possible.
Many of the parents and families we campaigned with started their child on cannabis the same day we did. Within 24 hours they were reporting huge gains from their children and stating better seizure control!! This was so awesome to hear and I rejoiced right along with them for the great success we all had been dreaming of. Then.....enter envy and jealously. Seriously, why can I not move on from this phase? Probably because I am human and my dreams have once again have been shattered by Emily getting worse on cannabis and not better like the other families are reporting.
I still have hope which keeps me going each day. We have a lot of room to play with Emily's cannabis yet and we will keep trying before giving up on it. I promise to do my best each day and not let the envy and jealously take control over me. I am happy to live in a state where the cannabis program brings hope and new found joy to so many families and children. I have read and researched a lot on cannabis over the last several years to learn that it can help about 90% of the patients who take it. However, I an thankful there's not a booked called: "What to Expect When Your Child Takes Medical Cannabis" or I would be in a world of trouble!