The boy with the orange chair.

Last Saturday evening, I sat at a table in Starbucks, surrounded by a collection of women.  Connecting with women I love and look up to.  Women that I've admired from afar via their blog.  And women that I had never met before, but felt an instant connection with as we discussed blogging, and family life.  It was a pleasure to be in the company of such kind and beautiful women and I have to thank Danyelle, Lindsay and Randi for putting it together.  It was a treat.

As the conversation turned to blogging content, one wise Danyelle mentioned that she missed hearing about my Jake and wished for more.  I'll admit, I've purposely avoided posting about him for some time.  Mainly because every time I try, I get too emotional and can't seem to make my thoughts translate coherently.  I also have struggled with wanting to share his story, but at the same time, wanting to be respectful of his privacy.  I don't feel the need to share every detail, but I know that by sharing, I can connect with other parents who are facing some of the same challenges.  In that connection, I have found great power and strength throughout my journey as Jake's mother.


When Jake was a baby, I tried to imagine what his life would be like.  What his struggles and trials would be.  At the time, I could only look at the physical aspects of his disability because he was an infant, and couldn't tell me how he felt.  So I put all of my focus there, knowing that one day the emotional challenges of Spina Bifida would most certainly take center stage in his life from time to time.

Jake is now facing some of the struggles that I knew would come eventually.  Mainly toileting issues.  We have a pretty good system worked out for his needs.  He caths every 3-4 hours and is on a medication to aid in bladder control.  He is even learning to cath himself with little assistance.  Because of the location of the lesion on his spine, his bowel control is also affected.  With him being in 1st grade and gone all day, we needed to implement a toileting schedule at school.  In working with the school nurse, things have gone fairly smoothly this year.  But he still has those days when things go wrong and he comes home in different clothes than he went to school in.  Thankfully, his teacher is wonderful and knows him inside and out.  She doesn't make a big deal out of things, and he knows that if he needs to leave the classroom, he is free to go.  But he is just like any other child and worries about what the other kids will say or think.  It breaks my heart to see him so embarrassed.

He struggles with feeling left out when he can't do some of the things that the other children at school do.  He does his best to find another way to do it, but sometimes it just doesn't work out and he is sad.  Seeing your child hurt, no matter the cause is painful for a parent.  Even though I know that the struggle is good for him and I can't solve these problems, it's still hard.  It is constantly weighing on my heart and on my mind.  It's just hard.

However, in spite of the challenges Jake faces on a daily basis, he is truly one of the happiest children I know.  He does his best not to let things get him down.  He is as smart as can be, (and knows it...) reads WAY above his grade level and is looking forward to 2nd grade.  He sees life through rose colored glasses and I wouldn't have it any other way.  He loves to try new things (except for swimming, he is deathly afraid of the water) and has the cutest sense of humor.  While at Disneyland last week, he told his dad (who was feeling a bit grumpy dealing with the large crowds) that he was more grumpy than Donald Duck...man, I just love that kid!  He just brings joy to everything he does in life.

Maybe I am a bit biased as his mother, but I'm pretty sure he also brings a little bit of sunshine to everyone he meets.