But that wasn’t my plan…

63367_10150259495140492_6409662_n5 years ago, September 17, 2010 – Ryan had the first of 3 brain surgeries to date – his Chiari surgery. The surgery wasn’t scheduled on 5 years and 1 day ago but it happened.

Ryan was 2 weeks away from turning 2. He wasn’t walking. He wasn’t even crawling. He wasn’t having seizures either.

Seizures started 4 days after this surgery. Seizures weren’t in our plan for Ryan – but it happened.

Blood work for a diagnosis wasn’t schedule to happen – but it did during this hospitalization just so insurance would cover it.

4 months later, January 10, 2011 – Ryan was diagnosed with a Chromosome 18 abnormality. That wasn’t planned either.

wpid-wp-1442604022419.jpegI’m in shock and awe when all of this is written in front of me. All of these things – they weren’t in MY plan for my child. It always happens to someone else, right? You always know another person who has a child who needs brain surgery, has a tough to deal with diagnosis. It’s never in OUR plan to have a child who needs surgery…especially on their brain! They’re not in any mama’s heart or plan for our own babes. But I’m reminded God puts these things into people’s lives for a reason.

Ryan’s taught me how to fight when I didn’t know how to…let me rephrase that – when I didn’t realize I could! When I was in the deepest darkest hole of my life – I was still fighting for Ryan (and Britney!). I fought with everything I had – because they were counting on me, their mama, to not give up on them. I fought and still fight for answers. I fight with kindness and comfort when people stare or say hurtful things. I fight by keeping my sharp tongue in my mouth when I really want to say something hurtful back but shouldn’t – so I just smile. I fight with my checkbook and finances. I fight for the insurance company to pay for medical needs. I fight by appealing insurance decisions beyond my control. I struggle with the seizures – and my thought process on if it’s the medications or Ryan’s brain and just the way God planned it for us. I fight for medication changes when I see changes and side effects in Ryan and my mama heart just breaks. I fight with my husband when I don’t mean to or want to but I’m so frustrated and exhausted I can’t help it. I argue with my teenage daughter about petty silly teenager stuff – and I’m reminding myself over and over – after the pettiness – that ‘I’m the mom’ and I shouldn’t act like I’m 13 again like this.  And none of these fights were in MY plan.

wpid-img_3119.jpgBut God’s plan for me (and Ryan) is bigger. He’s taught me that the seizures and Ryan’s diagnosis don’t make him who he is. Ryan’s a 6 year old boy, about to be 7 years old in 2 weeks. He’s in 1st grade at an amazing school surrounded by people who love him. He loves to get reactions from his family – making them laugh (and let me tell you – Ryan’s a comedian!!) or wanting them to make him laugh on a daily basis. He loves being outside or playing with water. Ryan loves blowing bubbles and listening to music and has some kick ass dance moves. He loves being loud and silly and running around playing. He loves his therapists and I thank God for those ladies because without them, I wouldn’t be able to see more of who Ryan is.

Ryan’s chromosomes and brain were all made different and he thinks and acts different than anyone else I know. The stories he has stored in his mind have GOT to be amazing…and I’m ok with not hearing them for now. I’m learning more and more to be flexible and accepting what’s in front of me. I don’t know that my plan would have worked out as good as God’s has. What I do know is I’m super excited to see where He brings us in 5 more years!


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