I feel a little up in the air these days. And it has been awhile since I have written, so I thought maybe putting it out there would help ground me and gain perspective.
So many life changes in the last few months. Dealing with the loss of my father, finding out who is really there for you during tough times, the trials and tribulations of friendships and relationships, and just overall contemplating what really matters in life.
I guess getting older starts to make you think this way. My mom is the most spiritual, loving, kind hearted women I have ever known. And I always remember her sending my sister, brother and I motivational quotes for the day, about being happy, and don’t let others hurt or get you upset, and all these corny things! But really and truly, they are all now making sense to me. I strive to at least be half the woman she is, and I know that would be the greatest gift to my children.
My birthday is coming up and I guess I am just thinking about where I am in life, and whether this where I want to be? Am I doing what I am suppose to be doing? Can I do more to make a difference?
All these questions keep swirling around in my head and I just hope I don’t lose focus on what I need to be doing – be the best mother I can be for my children.
I do know one thing for sure that will never change, that my children are my biggest accomplishment, what I truly live for. I just hope I am doing enough for them to keep them happy and create memories.
The summer so far has been great and I feel blessed to have made these memories with the kids.
We had the Peel Region walk for MD on June 4, 2016 and Jahan was an EXCELLENT Ambassador and had an overwhelming turn out for Team J RUN with over 100 people, including family that flew in for this event from Florida and Arizona! Jahan won both the Top Fundraising Team raising over $ 22,000 in Peel and number 1 in Canada as well as the Team Spirit award. It was such an amazing event to share with all of our family and friends.
Jahan celebrated his champagne birthday on July 5, where we enjoyed a quick family get away to Niagara, a birthday party with the family at home, and a “boys only” cooking party.
We snuck in a family trip for a friend’s wedding to San Francisco, where we did loads of sight seeing, including the Full House house, Union Square, Lombard Street, and Fisherman’s warf!
Hoping to have a few more family trips to create memorable family time together for Summer 2016!
Sahana, my little diva, is a tough cookie. I can see that she has the personality that will be loving, protective and supportive of her big brother. I feel like she already knows it.
I can sit for hours and just watch them together, of course at times they just drive me nuts and I am ready to pull my hair out, but watching them together is the best feeling that I cant even describe. I just get overwhelmed with emotion that I would do anything to freeze this moment in time, and just keep them young, innocent and happy forever.
My children are 3 years apart and truly are the best of friends. The bond they share is amazing and indescribable! When I allow myself to think about the day we must explain Jahan’s condition to them, I am overcome with such powerful, negative emotions.
I can see Jahan is starting to understand he is a little different from others. I can see he gets a little anxious in situations and I just don’t know what to do to help him. I strive to create positive and happy environment for Jahan free from worries and negativity. If I can make a day easier for him, just to keep him happy, I will move heaven and earth to make sure it happens. My latest love in life, is just having a date day, with just Jahan and I. A day where I just make it about him and what he wants to do. I hope he remembers these days, because these special days are something I will forever cherish.
I dread the day. I don’t want this day to ever come. No parent should ever have to explain what a fatal and incurable disorder is to their children. No child should ever have to bear the burden that they could live a shorter life. No sibling should have to comprehend that their best friend will leave them far too soon. No parent should have to bury their child. Ever. I hate to think this way, and I really push these thoughts out of my mind, but these are sad realities that are part of all DMD families. They are daily, heart wrenching, and the ultimate weight on one’s shoulders.
I start to wonder now as Jahan is getting older and will now be in Senior Kindergarten, how long will he keep this sweet innocence about the world. I want it to be forever, but the hard truth is he may face many challenges and struggles down the road, and my heart feels heavy to ever lose this amazing, considerate, sweet boy that I have that has deep passion and love for life and his ever-present smile.
Now is the time…I don’t want Duchenne muscular dystrophy to steal anything from Jahan – his ability to walk, to hug his family, to move, to lift his arms, and to do the simplest of tasks, like brushing his hair. At this tender age of 5, he is already faced with a mild heart issue that requires medication and I cant live with the thought that MD may one day steal his life away.
I have been trying my hardest to stay as strong as I possibly can for him. But I have to be honest, there are not enough words to describe the pain i feel inside for him. i have been trying to muster up strength and faith in God that everything will be ok and some days I am fine, but other days I am an emotional wreck!
I keep reminding myself there are so many drugs in clinical trial and there is hope. My husband and I are so thankful for this hope because we know exactly what is ahead for him if there is no intervention. We know the effects it will have on us and our marriage, on Sahana and Jahan’s lives, on his friends, his grandparents, cousins, teachers, his community. There is actually something that exists that will help our son, REALLY help him. Maybe we can have dreams for him that he may play a team sport, be a professional Bhangra dancer or be able to run and jump and climb trees and ride a bike, and just simply go to school on his own two feet and not get tired.
I have hope for these things and I am excited about it. But I would be lying if I didn’t say I am scared too.
I pray that we can get some type of drug or treatment approved, or get in a trial, or have it be available somewhere in this world and we will go there and get it! We will do what it takes to save our son and to help others in his same situation, and help this generation of DMD boys so maybe this can be a disease that one day no one will ever have to know or worry about. We pray that this will be the first generation of DMD boys to live, instead of the last generation to die.
I just wish I could freeze time.