Flu. Pneumonia. RSV. Respiratory Complications. Surgery Complications. Cancer. Hospitalizations. Death.
Sometimes this Special Needs journey is hard. Really. Hard.
I’ve sat by and watched several friends suffer through all of these in the past few months and am reminded again that nothing in life is guaranteed. Your whole world can be flipped upside down in an instant. The day you learn your child has special needs. The day you have finally adjusted to your new ‘normal’ and suddenly the unexpected comes and knocks you down. The journey is all about adapting and adjusting. One day everything is going just fine and all of a sudden, BAM! It’s like you’re stuck in a whirlwind and can’t even catch a moment to see straight.
I see my friends fight through these obstacles and remember that the same fight is knocking at my own door at any given moment. Braxton is doing incredibly well and making huge progress in all areas. I am so very grateful for that and I’m enjoying every moment. But I know that at any time it could all be taken away.
I have been very diligent in keeping Braxton away from germs and sick people because I know the toll it would take on him. I avoid taking him out in public when we don’t need to be out. I’ve even avoided Church because I just can’t bear the thought of him getting sick. This flu season has been exceptionally harsh on everyone and especially on those with special needs. Braxton has always had respiratory issues and I’m genuinely scared that if he catches the flu we will end up in the hospital. While I’m scared, others are living it and I just wish I could do something to help.
A member of our RTS family is battling brain cancer right now at only 13 years old. He is being a true warrior and handling the radiation and chemo treatments well. Watching him and his mother go through this brings to light the reality of the syndrome we are dealing with. Not all children with RTS fight cancer, but it’s a very real possibility. I’m so thankful to his mom for having the courage to share their journey and being able to read their updates just in case I ever have to walk that same path.
A friend I met through the non-profit I am a part of, suffered the unimaginable loss of her sweet son at only 4 years old. He was still partially undiagnosed. They had suspicions as to what the underlying diagnosis was, but no conclusive answers. No treatments. He had been doing so well and I was excited to see him making progress. And suddenly….he’s gone. I’ve seen loss on the special needs journey, but never this close to home. I have been devastated, and I know that what I feel is minuscule to what she feels with part of her heart missing.
Just because Braxton doesn’t “look sick” or “look disabled” doesn’t mean we don’t have anything to worry about. Our RTS friend went to the doctor because he was sleeping more than usual and just didn’t seem to be acting like himself and it turned out he had a mass in his brain which had to be operated on immediately. My friends sweet son passed sometime in his sleep with no warning, no sickness, no hospitalization. He was just at home being his sweet self. You never know when things like this will happen.
The fear and the uncertainty are always there. We have learned to quiet those fears by consciously choosing joy and positivity. We focus on the good things that are happening in our life and I try not to bring light to the worries that I have, but sometimes those worries are just too big to ignore. My heart goes out to all of my friends who are watching your children suffer with illness, cancer, or anything else that is keeping them down. This is a hard road we walk, but I hope you know that you aren’t alone.
I see you. I see what you are doing for your children and how you are fighting with everything in you to keep them healthy and safe. I’m praying for you and cheering with you when everything turns out okay. I’m crying with you when things set you back and treatments don’t work. I’m mourning with you when the unthinkable happens.
The tears are falling down like rain.
I know that I need to choose joy, but for now the tears are falling. The tears are an absolutely necessary part of this journey. You have to allow yourself to grieve, to mourn, to weep. And then you pick yourself up and carry on. Somehow, you always find the strength and courage to get back up and smile again.
With sickness and loss, we are reminded of the fragility of life. Nothing in this life is guaranteed, so don’t be afraid to love and live. If I allowed the fear of all the bad things that might happen consume me, we’d never do anything. I certainly wouldn’t know the joy that is held in my son’s smile. His smile exudes so much joy and his light suppresses all of the worry and all of the fear.
Let this be a reminder to love deeply, live joyfully and take NOTHING for granted.