Little Fighter; Lucas | Photographer in Batavia NY
/Meet Lucas!
You see that cute little face? That's the face of a fighter, a survivor; a baby! He has overcome so much more than many adults have in their entire lifetime, and he's ONE!
I met Lucas's mom in a social media mom's group. I won't go too much into the story of how because I don't want to lose track of the real story here, but needless to say, a couple of other moms were being very rude and selfish. Lucas's mom in-boxed me to share kind words. This was just before Christmas, and so our family was doing our annual Christmas donation. It was Christmas trees to families in need. She shared with me that her son had, had three, THREE brain surgeries that year and that she was just thankful he was alive! She was appalled to see these woman acting the way they did. I was so touched by her story that I just knew I had to meet her and her little guy. So I sent mom a little surprise in the mail; a gift certificate to have her family photographed.
Here's Lucas's story:
"3 days before he was 4 months he was rushed to children's hospital because he couldn't eat without choking and wasn't breathing right. He had lost movement in his arms. After 5 hours of being there he was put in picu on a ventilator to help him breathe. After numerous tests and MRI's they found chiari malformation and syringomyelia myelia. He had emergency surgery at 4 months old to help treat his symptoms. We was there for 2 weeks in picu. Little did we know our journey had just begun.
A few days before his 8 month Birthday he showed all the symptoms and signs again and was rushed back up to children's where they found he had hydrochephalus and at 8 months had emergency surgery yet again and had a shunt placement. After this surgery he showed improvement again but was hospitalized twice for a week each for high fevers and had to have his shunt tapped and antibiotics each time. We finally got home and was okay for awhile, but at his 11 month checkup (MRI) they found his csf fluid was blocked and the fluid in his spine had grown and he would require another decompression surgery.
So, at 12 months, he had another brain surgery. He did well the next few months and in November we got great news that his MRI showed fluid was flowing and the fluid in his spine had gone down. He has good days and bad days. When the weather changes it is really rough on him. His shunt was just checked recently and is working great. He will have the shunt for life and it does require revisions as he grows so everything is checked every 6 months. His next MRI is in May and we are hopeful for good news as this is an incurable disease and treatment is the only option.
He continues to grow and is the happiest kid. We got lucky and he has no motor skill delays but does require pt to keep on it as the syringomyelia affected his left leg for a bit. He will continue to have MRIs every 6 months and if I think he's acting off. It's been a rough road for our family but looking at him you would never know.
He will need revisions in the future and possible surgeries are unknown as he grows. He also will never be able to play contact sports, no roller coasters and no bounce house or trampolines he's going to give me hell when other kids can. I feel so bad about it but his life is far more important than any sport." -Mom
Mom, thank you for sharing Lucas's story with me, and now the world, but most of all, thank you for sharing your little guy with me. I had a blast! He is definitely a happy, spunky little boy. I can't stress it enough that just because someone appears to be happy, healthy, or on top of the world, doesn't mean they actually are. We all lift our heads and put on a happy face when in public, but the real story of each person lies deep inside.
“Give me scars, give me pain
Then they’ll say to me, say to me, say to me
There goes the fighter, there goes the fighter”
Mom asked if it was okay if we could get a photo of Lucas with his Easter basket because he was in the hospital for his 1st Easter. My response- OF COURSE!
Here is an image of mom and big sister. I only added this one because I love the emotion and connection this image offers. You can see the love they share, and the strong woman that mom is. My only wish for this image is that Lucas was present, too. He was done by this point.
