Every Step of the Way...18 Days Until the Race

It's hard to believe that the race is 18 days away.  This will be my third half-marathon, and Bruce's first. After 13 years of marriage, he's finally running with me again.  Every year I finish and think I'll take a break next year and give my body a rest.  About one week after every race, I am ready to do it all over again.  I run because it is a great way to release stress - pumping out those miles under the rush of adrenaline. It's a time to pray and regroup.  Last, but not least I run for Toby - because he can't.

Some of you may not know, but I actually have the opportunity to share our story quite frequently during the year.  I belong to a group at Nationwide Children's called Family as Faculty.  We are parents sharing our stories to hospital employees about what Family Centered Care looks like.  Our three main goals are to show: kids are kids all the time even when they are sick; kids are a part of families with interests and lives outside of the hospital; and the BEST care of kids comes through a collaborative effort between patients, families and their caregivers.  At the end of our presentations we open it up for questions.  We tell our audiences that here is the one chance they have to ask us any questions, to get the family's perspective.  This last time, I spoke to a group of nursing students, and it was a really great group.  I had tons of questions - some of them were pretty difficult.  One question recently (and I get this one a lot) is how do Toby's siblings handle everything.  Today's blog will answer that question - through a lot of photos!

I would like to think that they do really well - at least it seems like it from the inside.  Our kids were very blessed to be around Evan so much that when Toby came home with all of his equipment, they were sort of "used to it."  It wasn't a big surprise to them.

This is a set of my favorite pictures of Conor and Toby together.  I think Toby was trying to get his glasses!

One part of my personality, whether a blessing or curse, is needing justice and fairness in my life and the lives of those around me.  I try to keep things equal for the kids.  I know that at times this is dangerous and very impractical, so God is teaching me that everything in life isn't fair (obviously - we are living that out), but also that we need to teach/correct/instruct/rebuke our kids based on their personalities and learning styles.  I'm learning (focus on learning) to show my love to them according to their love language.  I'm also learning how to home school according to their learning needs.  HOWEVER, one advantage to this, is we try very hard not to allow Toby's hospital stays to interfere too much with their own events - like sports or birthday parties, etc.  We try to allow them to have their own interests/lives outside of Toby.  In a gentle way, we also point out to them the many things they can be grateful for.  They have experienced many fun and exciting events because of Toby.  They have had opportunities beyond anything most kids experience at their ages - Blue Jackets games, Crew games, events with A Kid Again, being on the television show - Tanked, etc.  So, even though some days can be really tough as Toby's sibling, some days are really fun too!

Each of the kids has a unique relationship with Toby.   Conor is his protector and a bit bossy, which lately has been a good thing.  He's been the one sibling who can motivate Toby to eat his solid food at every meal. He's good at thinking of ways Toby can participate (he's also good at this with his friend Evan).  When he first came home, he loved holding Toby - would read to him, and wanted to always be with him.

When Toby came home, Garrett was so little, so he didn't care too much about holding him, but that later changed.  He is our empathetic, bleeding heart. One time when Toby had surgery, and they came to visit he said, "They crack Toby open" and  "It's not fair."  He wanted Toby to come home from the hospital, and he was 3 1/2.  One time, Toby was crying during a trach tie change (those white ties that keep his trach in his neck), and he thought we were hurting him.  He said, "The nurse made me mad!"  He's also my kid that runs from the room with a queasy stomach if too many secretions come flying out of Toby's trach.  He's also the one that I think the instability of those first few months really affected him the most.  He turned 2 when Toby was in the hospital, and I think emotionally it caused too much instability.  I really have to work hard to communicate with him all that is happening when Toby goes in the hospital, so he doesn't fear the unknown.
Just a few months ago, I had to sit down and explain what Spina Bifida is, why Toby has a trach, a feeding tube, and a ventilator.  I just assumed he knew, but he was too small to remember when Toby came home with all that equipment.  I have to remember NOT to assume anything when it comes to Garrett - he has to talk things out.

Caris is Toby's playmate.  She is pretty mature for her age, and Toby is immature in some ways, so it makes it a perfect fit for them to play together.  She likes to pretend, and I can see how developmentally she has really helped him a long.  Sometimes, I laugh and cry when I'm quizzing Toby on letters, shapes or colors and she knows them before Toby!

When Toby saw Caris at birth, it was love at first sight.  We were so nervous about it because prior to this Toby was afraid of babies and toddlers...but his little sister was a completely different story.

Toby used to HATE having pictures taken with his siblings.  He would cry and cry.  I also laugh looking at the middle photo because Toby looks as if he's ready to rip out his g-tube!

Last summer, I attended the National Spina Bifida Conference, and sat in on a sibling panel.  It was amazing to hear these teenagers' stories.  They opened the panel up for questions, and you could tell that each of these brothers and sisters were so thankful for their sibling with Spina Bifida.  It had taught them so much - most of all to give to others and how to be unselfish.  Hearing their perspective caused the tears to flow; it was a very emotional session, but also helpful to hear their perspective, and I pray that when my kids are grown, they will also be thankful for each other - and for Toby, and what God has taught them through him in their lives.