Hi! We’re Swati & Kyra. Welcome to our journey. This is a story of a little girl who had to fight to survive. Kyra had intra-uterine stroke which caused a neurological condition called Cerebral Palsy. This website is dedicated to her journey and the ups and downs of having this diagnosis, and the joy and happiness we feel when we overcome our challenges. This is about motherhood and its challenges of having a special needs child and also about the strength and how we keep going.
She survived a pediatric stroke where she could have died as well, she is my superhero. She fought so hard to survive. She still is fighting hard.
We are here to help more families like us, who need a little more knowledge and wants to know that their kid will be okay if in case you get the same diagnosis, and also learn more in case anyone has more information by sharing experiences. We are here fighting, with all our strength, raising awareness on the condition hopefully helping similar families.
And We Rose Like A Phoenix
When you first become a parent, you look for all those first milestones. First smile, first word, first steps. This is what we have been taught to do. We wait patiently, eagerly and excitedly for all those moments to arrive. But sometimes Life has another plan, you have a child and few months later you discover that your little nugget has Brain damage. You hear the words coming out of the doctor’s mouth but somehow your own body shuts down. It feels like someone has thrown you down a very high cliff and wants you to fly. You want to fly, but no one has taught you how, you have not seen anybody do it. You fall, and fall, and burn, and then you Rise like a Phoenix.
My daughter has Cerebral Palsy. Doctors predicted she might walk with aids, or not walk at all. Today she walks without aid, jumps, rides a bike and does whatever she was told she couldn’t. When you become a parent to special needs child you become this fierce and powerful energy that your child needs you to be. You fight for services, push for appointments, learn all the jargon’s, and make sure there isn’t any stone that’s left unturned.
I was devastated. I had to learn a lot and very fast. I had to come out of darkness and be there for her. I had very little time to grieve the loss. When others cheered their kids for walking, I was cheering because she was trying to walk, and when others were sleeping at night, I was watching my daughter so she wouldn’t have a seizure alone, even my breaks were filled with constant search on internet on ways to help my daughter.
I remember the time when Kyra was not talking and had to start Speech therapy for her and that was just another addition to ongoing chaos.
We were first time parents and New Parents to this special needs journey. We gave heart and soul in therapies and believed with all our strength and Kyra graduated speech a year ago!
Now time for what if.
What if stopping speech just delays all the progress we have made, what if they evaluated her wrong, what if she regresses. But we had faith and today she loves singing, its not perfect but it’s something that I never imagined as a special needs parent. Today she can sing more than 10 songs from start to finish.
But admits all this, I forgot to take care of me. I broke down like a machine that was overused. I couldn’t get out of bed. Reality hit me hard that day. My daughter still needed me, but I needed myself more. I had to prioritize. I had to put myself first however selfish that seemed to me. The guilt was eating me alive. I made a choice to give myself 2 hrs a day where I am not talking about her, reading about her conditions, searching internet for ways to help her. I suddenly realized I had very little left in life that wasn’t about my daughter and her condition.
AND FINALLY MOVING ON
I started going out more, making new friends, talking to people. It felt good, like I too have a life. I started a blog to help other parents in my situation and that felt liberating. Today I receive messages from moms all over the world, in similar situations like I was few years ago and it feels good to be there for them the way I needed someone.
Today we are happy and have adapted in this Imperfectly Perfect Life of ours. We laugh, play, giggle all day and are thankful for this life every day.
And to end this, Be the force that your child needs you to be, get out of Denial and be there for them, It’s just a diagnosis and not their personality, It’s just a part of life and not Life itself. Be the super hero to your hero. Be the unstoppable channel of energy and move mountains and help the kids achieve the impossible. You are able, smart, beautiful, intelligent, resilient, determined, fearless, vivacious, strong and capable.