And just when I start to worry...

We decided to save the money (but not our sanity) and make the 16 hour drive back to Indiana and Kentucky for Thanksgiving. To our complete surprise, the boys were total angels without even so much as a tear or a squabble the entire way. How lucky are we?

I had carefully prepared several keep-busy activities - coloring books, a plethora of DVDs, etc. - all of which seemed to serve their purpose. The only times they even really talked were to say the two most dreaded sentences during a road trip: Are we there yet? and I have to go potty.

However there was one moment where I looked back at the boys and saw Aiden in deep thought staring out the window. A minute later he said "My friend at school said my hands are weird."

It's the first time he's ever mentioned anything of the sort. Perhaps the first time he really understood when someone pointed out his differences. My heart started to break, but then I put on my brave face.

"What did you say?" I prompted, trying to buy time to figure out how I was going to approach this.

But then, his response let me know that he could hold his own.

"I said 'My hands aren't weird. And I'm bigger than you.'"

Love that kid :)

Giving back...

Something that has been on my mind lately is how much I've benefitted as a result of “giving back” since Peter was born. When we are faced with life-altering challenges, those trials can be like a fork in the road. We can grow, learn, and become better people, or we can wallow in self-pity and become hopeless and depressing to be around. I’ve spent time in both places, but I eventually chose to take the more positive path.

Volunteering my time and skills is a huge blessing in my life. The professionals I have learned from, the parents I have helped, and the many friends I have made are just a few of the benefits I’ve received through volunteering. If you are looking for ideas, here are some activities I’ve been fortunate enough to participate in...

• Parent Advisory Role – there are many opportunities to participate as a family advisor to hospitals or state legislative groups for children with special needs.
• Family Faculty Programs – many hospitals are now inviting parents to speak to staff about their experiences. I have done this and have found it to be very rewarding.
• Writing – sharing your story and experiences via a personal or professional blog, submission to a newsletter like the one CCA has, or submitting to a magazine.
• Online Support Groups – there are many Yahoo! Groups you can become involved with. CCA moderates several groups to help craniofacial families stay in touch and share information. I’ve been involved with several groups for many years (Goldenhar, BAHA, Microtia/Atresia, Tube-Fed Kids). It is so easy to share a simple tip or advice with other parents via online groups. Social networking sites like Facebook and Twitter have also become easy venues to stay in touch and share information.
• Fundraising – maybe you want to spread awareness within your community by organizing a fundraiser for CCA or your children’s hospital.
• Education – speaking at your child’s school helps to spread awareness and acceptance for all children with disabilities. CCA has information about speaking at schools if you need some direction to get started. For me, speaking to Peter’s peers was an amazing and rewarding experience. I highly recommend it!

Maybe take some time as this year draws to a close to think of ways you might give back. Sharing your time, skills, or experiences is a wonderful gift to offer as well as a great example for your kids.

Happy Thanksgiving!

Why is the sky blue?

Earlier this week we were having a typical busy night of homework, dinner, and after-school activities when Peter says the following to me: “I understand that Jesus died for our sins so that we can have eternal life. But, why did God allow his Son to suffer so much?” I stopped in my after dinner cleanup chores, shook my head, and said, “What?” “Why did Jesus have to suffer?” He said again.

I was speechless. Peter has been asking a lot about heaven, which is not surprising since he just lost his cousin. Losing a loved one certainly makes us all question our beliefs. But, “Why do people suffer?” “Why would a parent (the almighty God) watch his child suffer?” Those are some pretty heavy thoughts for an eleven-year old.

Well, I said, let’s go look in some books. Peter and I both have the bookworm gene, so this next step was predictable. The two of us were noses buried in various Bibles and theology books for some time. We also did some research on the Internet. Unfortunately, I wasn’t able to find an explanation that satisfied either of us. If anything, I think we both had more questions! Finally, I said (feeling a headache come on), “Why don’t you go play a video game, and we can ask your Dad when he gets home!” Whew, I thought. This is way too deep of a conversation for 8:00 on a Wednesday night.

Belief is a challenging topic for parents, especially ones with medically-involved children who endure countless trials. I plan to continue this conversation with Peter since, as he said the next day, “Yeah Mom, you were pretty clueless.” I suppose that’s true, but, hey, he caught me off guard! I’m guessing that Peter will someday enlighten me with a far better answer than what we could find in a book or on the computer. In the meantime, I’ll continue praying for guidance and wisdom on how to raise such a thoughtful and challenging son.

Teaching toddlers that "Everyone is different"

The other day, I took Ethan with me to the grocery store, leaving Aiden behind with his daddy. I rarely get to spend one on one time with either, so I love these rare moments. Ethan was being especially good - I think because he know the store had toys and he was hoping to talk me into a purchase. Which he did. I let him choose something for under $5 and he was thrilled to finally get the "Barrel of Monkeys" he'd had his eye on for a while.

About halfway through our trip, I turned my back to face the meat case and choose some chicken breasts, when a small Asian woman tapped me on the shoulder.

"'Scuse me, he hit her," she said in broken English.

I flipped around to see Ethan standing near this woman's cart where her 2 year old little girl was sitting quietly. The look on his face confirmed his guilt before I'd even had a chance to react. My face flushed red. I grabbed his hand, spun him around and marched him over to apologize. I apologized on his behalf to the girl's mother and we walked away.

"What happened?" I asked Ethan. "Did you hit her?"

"Yes," he replied as his eyes welled up with tears.

He went on to tell me he slapped her hand because he didn't like the way she looked. He didn't like her eyes - they looked different from his.

I honestly couldn't believe what I was hearing. Here he is, 4 years old with a brother who clearly has some physical differences, and he's mistreating a perfect stranger for nothing more than her looks. I couldn't help feeling like I had failed in some way. Needless to say, he did not get that Barrel of Monkeys, and he threw quite a fit as I took them out of the cart. It was not a good day at the grocery...

We have always been very forthcoming with our kids when it comes to talking about differences. We have stressed from a very young age the whole "Everyone is different" mantra. We point out how some people are short, others tall, some have dark skin, others light...and some people have disabilities and need things like a wheelchair or trach to help them do everyday normal things. We started talking about Aiden's hands with Ethan when Aiden was still a baby - not to point out his differences, but to help Ethan understand that if he had questions, he could ask them without hesitation.

Despite all the preparation, I suppose every parent will find themselves in situations like the one I had in the grocery store the other day. Perhaps it is just an instance of a 4-year-old acting out. Even so, I used it as an opportunity to remind him about everyone's uniqueness, and that if he had questions, he should ask mommy in private and I would help him understand.

However, the very next day, Ricky took the boys to lunch and found himself in a very similar situation. Ethan was passing a little girl in the McDonald's playplace and called her "weird" because of the way she looked. Now I'm beginning to wonder if perhaps this is an indication of something more than a 4-year-old acting out. Maybe he is finally starting to realize how his own brother is different and is finding inappropriate ways to project the way he feels about it.

I'm not really sure how to address it. Do I continue to talk to him about Aiden to encourage questions regarding the way he feels about having a brother with differences? Or do I keep it more broad, focusing on how every person is unique and that it's just how God wanted it? I'm at a loss. Does anyone have any advice?

Did you get your flu shot?

This week I decided that I couldn’t put it off any longer. I got my flu shot weeks ago, but I still had not taken the boys in to get theirs. Jacob is easy as he is able to get the mist, but for Peter it is quite the ordeal. Due to his airway complications, he has to have the injection. Unfortunately, Peter and needles have a very long history and an extremely confrontational relationship!

I was sneaky about it this year, which always makes me feel bad. But, telling Peter in advance over the years has not proved beneficial. If he refused to get out of the car when he was little, I was able to carry him into the doctor’s office. Now, however, he’s much too big for me to pick up and also much stronger. Plus, I don’t’ particularly enjoy the prospect of making a scene in the parking lot with potential witnesses. I’m sure no jury would take my side once Peter took the stand!

In my many attempts to help Peter, I have tried every approach you can think of—tough love, sympathy, reasoning, and everything in between. We have also been to a psychiatrist and consulted with Child Life Specialists on ways to cope with this fear.

So, this week, I cowardly took the boys to the pediatrician’s under the cover of needing Jacob’s ear checked. I know Peter was suspicious, and we did talk about how he needed to get a flu shot. But, I was totally noncommittal up until we were actually on the property! Once we got in the exam room, I sprung it on Peter that he should really get a flu shot since we were already there. What pursued was his typical hysteria.

Jacob quickly had his FluMist and was escorted to the waiting room with my iPhone for a session of “Angry Birds.” I regretted that I had not packed ear plugs to give him as well! A nurse and I then spent about 30minutes trying to calm Peter down. We gave him as many options as we could think of, including where he could have the shot (arm or leg) and how he could position himself. She also brought in a “shot blocker” that is supposed to make the injection hurt less. Peter wanted nothing to do with any of it. FINALLY, we made the decision (which is what usually happens) to hold him down and get the deed done. This time, instead of lying down, I told Peter to hug me real tight. As he did, I held his arms down while the nurse gave him the shot in his arm. As I’m hugging and holding him as tight as I can, Peter shouts, “Why does God have to give me all this shit?!” Why indeed?

Once the shot was over, Peter remained in my arms for several minutes. We talked, as we often do, about how life isn’t fair. We talked about how he has to endure a lot more medical tests and surgeries than other kids. And, we talked about how there are a lot of kids that go through much, much more. I told him that I wouldn’t be a very responsible parent if I didn’t make sure he got his flu shot, especially with his medical history. I know Peter is embarrassed after something like this, and I know, like me, he doesn’t understand why he can’t maintain just a little bit of self control.

Before leaving the exam room, I told Peter that I loved him and that none of us understands why God, to use his words, “gives us so much shit.” But, God also gives us the ability to choose how we react to those trials and live our lives. I also mentioned that if I ever heard him use that word again, he would be grounded from video games for a week. As he knows, Mom does not hand out free passes for saying bad words!