The Thull family has been through quite a few challenges the past couple of years since we profiled them in Family That Shines. Along with COVID and Jared’s cancer treatments, wildfires and home evacuation were also part of their world. When Jared’s mom, Nicole posted this update on his journey, we asked if we could share her perspective on how things have changed for them. This is what Nicole is thankful for now:
This (post below) feels like a lifetime ago, but like yesterday too. I still worry for him what his life is going to be like in the future, relapse , side effect from the chemo….we are forever changed, but I still have him. I am grateful for everyday we are blessed with every milestone he reaches. 3 years ago he was in so much pain from meds that kept him alive. Today his pain is he has to be at wrestling at 730am . I am so blessed to still have my boy and see him thriving. There were times I was so scared he was going to leave this earth. He is my everything! I am so proud to call myself his mama!”
January 5, 2019
(from Nicole’s Facebook)
One of my support groups posted this its so accurate.
Things I want people to know as a parent of a child with chronic illness:
1) The day my child was diagnosed, my whole family’s life changed in an instant
2) I worry every minute about my child, sometimes irrationally
3) I long to see my child not in pain
4) I regularly check to make sure my child is breathing when he is sleeping
5) I don’t want my child to be sick
6) I am bone tired
7) I am emotionally, physically and sometimes financially exhausted
I am grieving what I thought his life would be, what my life would be, what my family’s life would be and that makes me feel guilty sometimes
9) I am grateful it’s “not worse†but that does not make each day any easier, so please don’t tell me to look on the bright side, be positive or be grateful for what we do have. I am aware of that, and most days I am but some days, I just can’t.
10) I do not want sympathy, but sometimes I do long for empathy from doctors, school admin, teachers, insurance companies, family and friends.
11) I am happy when people ask how my child is, but I am also aware that most people don’t really want the truth
12)I would give anything to be fighting with my child about getting home before his curfew, or cleaning his room, or walking the dog…
13) I am sometimes just angry
14) I cry in the shower, in the car, in my bedroom…
15) I am not as strong as people seem to think
16) I am a control freak because i have to be.
17) I am an advocate. I have to fight for services that my child needs not only to thrive and be successful, but also sometimes for things he needs to survive.
18)I am proud of my child, he is the strong one.
19) I long for a life of soccer games and school dances, of girlfriends and guys night out for my child.
20)Sometimes I just need to vent. And sometimes I need someone to just listen. I’m not looking for answers, sometimes I just need to get it out.
I am grieving what I thought his life would be, what my life would be, what my family’s life would be and that makes me feel guilty sometimes