Two weeks ago on November 1st was the 4 year anniversary of Julia’s diagnosis. Seems like it was just yesterday and at the same time it feels like a lifetime ago. This was the first year that I didn’t let the horrible pain and memories from that day take over my thoughts. Of course I will never forget that day and I remember it too vividly sometimes. Every year on Halloween… I think about how Julia was in so much pain on that day 4 yrs ago that we stopped trick or treating because of how uncomfortable she was. I think of how innocent she was before this whole nightmare started… about how our lives will be changed forever because of that day. But I woke up on that day feeling so much gratitude for where we are now and for Julia being able to dress up, go to school, and have fun with her friends like every other child did that day. We don’t take simple moments like this for granted. Because we have been in so much darkness that we couldn’t see the light… we have been in the worst of storms and felt hopeless, scared and in despair. Even though there were many moments I felt like even God had abandoned our family and I felt no connection to Him, I know now looking back that He never left our side because God never abandons His children. He was there giving us strength, courage, and patience to get through each day. Slowly we came out of that darkness and saw a light and a hope that we hadn’t seen in a long time. It takes so much strength, perseverance, patience, and faith to get through such a horrible experience like this. And even though we are so thankful for how far we’ve come, the fear and worry of going back into the darkness haunts me almost each day. This is something I have to learn to live with because no matter how much I try, that fear will never go away. Some days are so much better than others… but ultimately something always triggers in my mind to go back to that dark place.
I wanted to post this 2 weeks ago ago but i never did. Things have been a little crazy lately and i don’t see life slowing down anytime soon, especially with the holidays coming.
Julia is doing so much better in school this year. Her teacher adores her and we are so happy with her progress. She still has a hard time focusing but she has come such a long way since last year. I am so proud of her.
She wears hearing aids because of her hearing loss. She’s overdue for another hearing test, but unfortunately Julia was complaining that she feels like her hearing is getting worse. So we need to get her tested soon. Hopefully she won’t need new hearing aids because they are very expensive and she’s only had these for a year.
In between Julia’s shots that she gets in NY, she takes a medicine at home that helps activate her immune system. She takes it for 2 weeks on and off. At first she hated it but she’s gotten much better at it. She has to take it with no food or water and can’t eat for an hour afterwards so she takes it first thing in the morning.
Please pray for our family and especially our health. It seems like we always have a scare and if it’s not with Julia it’s with one of the others. It’s been a lot to handle lately. Just pray for continued health for my babies.
To Jesus through Mary,