Monday, June 20, 2011

Retreat week!

This week, I will be heading back to my old stomping grounds - Louisville, KY - for this year's CCA Family Retreat. I'm really looking forward to seeing some familiar faces, meeting new ones and putting faces with the names I've "met" through emails, Facebook and other CCA communication.

This will be my family's 3rd retreat experience. When Aiden was 16 months old, we were in Dallas for his post-op visit after his 1st cranial vault and it worked out that we were able to attend the symposiums at Great Wolf Lodge prior to flying home. We didn't get to stay for the whole retreat, but it gave me a chance to check things out. It was early in our craniofacial journey and we were still feeling things out when it came to reaching out to others and finding support. What I saw in that short period of time got me interested in participating in the next year's retreat in Boston.

We made our plans to attend the Boston retreat and counted down the days. I brought along my son Aiden (then 2), my mom, my sister and my aunt - they all wanted to be a part of this amazing experience (and enjoy the sights of "bean-town" too). Although this was our first full retreat, there were so many people that I'd already become acquainted with during doctors visits, hospital stays and by swapping stories on various support groups online. It was really cool to meet and get to know each other better in a setting that didn't necessarily involve stressful medical situations.

The activities were fun, the hotel was nice, but what really made the entire experience worthwhile was seeing the kids interact so comfortably. You could tell that they felt at ease among their peers and didn't have to worry about their differences taking center stage as they sometimes might in other social settings. The siblings got to hang out with other unaffected siblings who could relate to things they were going through as well. The dynamic was astounding, and even though Aiden was still a little young to get the full effect, I knew at that moment that this was an experience he and our family would enjoy in the years to come.

Here we are a year later, and we are anxiously awaiting the start of this year's retreat. We've been discussing the event with the boys - we will be bringing both Ethan (4) and Aiden (3) - and they seem genuinely excited about it. We've been talking about how there will be other kids who look a little like Aiden. And while Ethan doesn't even think twice about how his brother is "different", naturally I am a bit concerned with how he might react to seeing so many unique faces, so we've been showing him pictures from past retreats and pointing out how happy everyone is to be there. They know this is a time to have fun and make new friends and I think they will become more comfortable once things are under way.

We look forward to this week's events and can't wait to share our experience on the blog! We hope to meet many of you there, or if you've never been, we hope to show you the many reasons why you should mark your calendar for next year's CCA Retreat.

Friday, June 17, 2011

A Tribute to our Husbands & Dads...

My husband and I celebrated our 14th wedding anniversary this week. Being so close to Father’s Day, I also started thinking about how grateful I am that he shoulders some of the parenting responsibility. Typically Darin and I have the same goals in mind when it comes to making decisions for both of our kids. Our perspectives and ways of achieving those goals, however, are often different. I think this has been a good benefit to both of our boys. We tend to balance one another out. Darin says I reside in the “glass is half empty” corner of the ring, which I prefer to call “realistic!” Definitely different perceptions-- all for the betterment of our offspring!

As new parents, we were in total survival mode during Peter’s first few years. Darin and I lived in our own worlds of grief and fatigue. We had to redefine ourselves, our new identities as parents of a medically fragile baby, and, ultimately, our sense of who we were as a family. Who were we as a couple? I have no idea. I don’t think we really even existed as a couple. We had some pretty dark years.

There’s a saying that goes something like, “that which doesn’t kill us, makes us stronger.” I believe our relationship is a testament to the truth of that statement. I can feel the strength and wisdom we have gained, and it provides the foundation I stand on today. Being the parent of a “special” kid, is an experience like no other. If you haven’t lived it, then you cannot fathom the gut wrenching sadness, the overwhelming pride, and every possible emotion in between.

I’m so glad to have a partner as strong as my husband. He’s been the one holding me up when I didn’t think I could stand anymore, the one comforting our kids when I was too emotional or wrought with guilt or grief, the one who has steadily held it all together, and the one who has provided us with a comforting and healing home. For all that and so much more, I am grateful that he is the man I married and the father of my children.

Happy Father’s Day!

Wednesday, June 15, 2011

Ch Ch Ch Changes

With most every craniofacial surgery a new appearance emerges. It may take time to adjust to the changes. It may take parents a long time.

We have only been through two craniofacial surgeries, and the first nearly broke my heart. I loved my little guy's big eyes and metopic ridge, he was my baby and I had no doubt he was the most beautiful child in the world. I cried, a lot, about the loss of that precious face. Following the recovery of John's anterior cranial vault, he looked angry to me, with the brow bone pulled forward. Luckily after a few months, I didn't think about it any longer, unless I was looking through old photos. Still that tinge of pain pulled at my heart, he had been perfect as he was. I soon came to realize, or rather remind myself, that he was perfect with his new look too.

2008 Before and After

I was anxious about this aspect with our most recent surgery. I knew our doctor was planning to over correct to a higher degree this time, to prevent another incident with John's eye. His right, more proptotic eye had dislocated a few days after Christmas. It was a scary experience, and we definitely do not want that to happen again. Anyway, I just knew I was going to have a hard time with these changes, as I had the first go round. When we first saw John in the PICU, just out of surgery, I was shocked at how calm I was. That feeling I had experienced back in 2008, a little dizzy, and very sad, didn't hit me. Still, I knew it was coming, I was bracing myself. But lo and behold, I have yet to feel a sense of loss with this one. Maybe I have come to a new place of acceptance. Maybe John's personality is bigger and more defined this time, and has helped to compensate for the changes in his appearance. Maybe my emotions have hardened over this journey, and I must note, I was 7 months pregnant last time. I have no real explanation for it, but it has been so much easier on me this time.

2011 Before and After

This is what I want, isn't it? I want everyone to know my son on a level much deeper than his outward appearance. And I especially want others to "judge" him by the content of his character, not by the placement of his brow bone or jaw alignment. Perhaps me not placing a whole lot of focus on his looks is a step in the right direction. Of course, that statement is hardly accurate at face value. I do care, I want him to be happy with how he looks, I want him to feel confident. We discuss these things with his doctors every single appointment. How can we achieve the most "normal" appearance? I suppose there is a balance that we must find in dealing with this aspect of a craniofacial condition.

We have future surgeries to face, surgeries that will more significantly impact change on John's appearance. I have no idea how that will feel. I wonder how his feelings about the changes will influence mine. I hope those of you have been there will have some insight to share with me and our readers.

I also want to thank Dede and Tricia for the research topics. I hope to have a post up in the next few weeks! Keep them questions coming! Feel free to email me directly at [email protected].

Friday, June 10, 2011

School's Out... Now What?!

As every school-year ends, I try to find a balance between getting Peter’s medical needs met and still allowing time for unstructured fun. Sadly, our craniofacial kids are often subjected to an excess of appointments during summer break. These are the easiest months to travel for that second opinion, schedule the elective surgery or test, and intensify therapy sessions or tutoring before school starts again.

On the “necessary” side, I've committed Peter to weekly tutoring for math and a handwriting therapy class. Fortunately, we don’t have to deal with any surgeries this summer, but he will be getting braces. I also try to take care of several clinic visits so that he doesn't miss too much school. That usually means lots of appointments in July and August to see his 8-10 specialists.

On the “fun” side this year is the CCA retreat, karate classes, the library’s summer reading program (he’s a bookworm!), Bible School, and trips to visit out-of-state family. Altogether that is way more scheduled time than Peter or I would like. I know what Peter craves most of all is the freedom and relaxation of simply being home with no school projects or homework deadlines. Who doesn't, right?

What seems pronounced to me during the summer is how Peter’s disabilities have become more socially isolating for him. He has a difficult time with the heat, so outside activities like sports and day camps are not enjoyable. Peter used to love the pool, but his friends have moved beyond the shallow waters and are now diving at the deep end. The most he can do is float around on the surface due to his still open trach stoma. Peter is also restricted from playing contact sports because of a single-pelvic kidney and c-spine instabilities. Eating, which is also very social, is a problem as well (he's had a g-tube since birth). Separately, these restrictions don’t seem like such a big deal, but they are extremely frustrating. In many ways, they are defining his social interaction, his level of independence, his self-confidence, and his overall personality.

Peter has become an expert at escaping into a fantasy world, usually of Star Wars or Harry Potter, and it often consumes his entire attention-- to the point where it is almost obsessive. I think this has a lot to do with his physical limitations as well as the stress and anxiety he has from being so medically complex. I do love his active imagination, but most of his friends don’t want to live in a constant fantasy world of pretend anymore. They are in organized sports and activities that Peter either can’t or won’t participate in. Right now, Peter’s main avenues for social interaction are video games and movies. These activities level the playing field and enable him to connect with friends in a relaxed and fun way.

I’m sure the dilemma of a “necessary” vs. “fun” summer schedule will continue well into Peter’s teen years. The best I can do is to find a balance that doesn't overwhelm him or the rest of our family. Schedules are not what summer should be about. It should be about creating memories and spending extra time together. All I know for sure is that Peter and I will be waiting in line when the new Harry Potter movie comes out in July!

Happy Summer!!!

Wednesday, June 8, 2011

Four Year Olds are Awesome

And I am not talking about mine here.

Since John's recent surgery, I have been blown away by the quality of character I have seen in the little people in our lives. John has some super friends. They have handled John's surgery and recovery with a grace that I could have never expected.

I was concerned that seeing John swollen would be frightening for them. I was concerned that John's differing appearance would be so foreign that they would be nervous or uncomfortable around John. I was so concerned that I nearly canceled a visit, because I didn't want John to be upset. In truth, I didn't want to become upset myself when John's friends were frightened or uncomfortable. Boy did I have a lot to learn from a bunch of four year olds.

These little people were in our lives for the first vault at 17 months, but they were so young they didn't think about or react to the changes. My how they have grown. I never realized how much concern and compassion a four year old could possess. Josh, Luke, Ava, John, Thatcher, William, Katie, Mollie, Kai, they all love John and they talked with their amazing parents about what was going on with him. They knew this was a big deal...they were worried. They prayed, they made cards, they drew pictures. When they first saw John, they looked at him with such sincere concern, as I, at 35 years of age, would look at a friend who had been through some significant trauma. And as soon as they realized John could see, and John was John, they were good to go. They didn't make a big deal out of his swelling, of his new look, they moved on...they knew by his silly grin, that their pal John was OK. They knew, in their own way, that John had been through something remarkable and they were proud of him. Then they quickly ran off and played Star Wars, cars and Batman, just like they had in the weeks before.

All of us know, the worry. The worry we all possess with regards to teasing, bullying, rejection, exclusion. The heartache associated with this is the number one thing that others who have walked this path before us all agree upon. I know it is coming. All the experts talk about it. We plan surgeries around it. We are trying our best to prepare for it. Trying to develop thick skins, and build confidence in our little boy.

I wonder how these children, that we adore, will feel about John in four more years. Maybe I am naive, but I know these parents, I know these kids and I have great confidence that "knowing" John will make a difference in their attitudes towards all others with differences. One thing I know for certain, we will bask in the love that is being showered upon our little boy right now. And we will hope that these memories will carry us through the more difficult moments we face as we go forward.

Oh, and wouldn't it be great if we could all hold onto the social compassion of four year olds?

Monday, June 6, 2011

Choosing a craniofacial team

After we had Aiden, and after the shock began to wear off, we knew we had to buckle down and make some pretty important decisions. Decisions unlike the ones we made after our first son was born - what outfit to bring him home in, which blanket to swaddle him in. As we placed Aiden in his infant carrier and were discharged from the NICU with an apnea monitor in tow, the decisions we faced were not anything we could have prepared for. The nursing staff went over the list of specialists to see and appointments that had been scheduled for Aiden on our behalf, highlighting the date and time of each one, and sent us on our way. Totally unprepared.

I sorted through the list and turned to Google to determine just exactly what role these doctors would play in Aiden's life - neurologist, orthopedic surgeon, pulmonologist, ophthalmologist - words I had only heard in episodes of Grey's Anatomy prior to this day. My mind raced with questions.

We passively attended some of the appointments on that list, naively assuming those were our only options as decided by the capable medical professionals at the hospital where Aiden was born. I'm not sure at exactly what point we realized that in fact WE were going to call the shots as Aiden's parents, but it was at that time that we began to feel empowered. We spent the next 8 months hand-picking the very important team of doctors that would be best suited to help our little guy thrive.

As we navigated this intense and often scary period of time, here are some of the things we found extremely helpful in making our decision:

Arriving in Chicago
  1. Do your own research. While I will admit that immediately turning to the internet the first few days was a little overwhelming, even depressing, we quickly learned that much of the information about Aiden's condition was either outdated, incorrect, or both. Even so, it was during those initial Google searches that we began to familiarize ourselves with some of the terminology that would become part of our everyday vocabulary. Through our research, we were able to develop a pretty extensive list of questions for each of the specialists and we also came across a bit more educated, which I felt made them take us more seriously.

  2. Be prepared for every appointment. Bring your list of questions, a recording device (even your phone might have recording capabilities), a notebook and pen, any previous medical records or scans and an advocating attitude. We went into our first few appointments confused and passive. But we gained some perspective with each, and began developing our arsenal. Once we had some confidence going into the appointments it became much more clear who was a good fit and who wasn't.

    For instance, our visit to the local plastic surgeon that was recommended to us was a clear flop from the beginning. We begrudgingly looked past the posters of perfectly constructed bosoms that plastered the walls in the waiting room, attempting to keep an open mind. But when he politely cut me off at about question #5 of 30 saying "If you have any more questions, just let me know" as he exited abruptly, we politely cut him off our list of contenders. If he couldn't even spend more than 20 minutes with us discussing the delicate nature of a necessary skull surgery for my baby, we didn't feel comfortable that he would include us in the process going forward. Clearly, his best work was advertised on the waiting room walls.

    Taking careful notes and having conversations recorded made it easier to recall our initial impressions and the proposed treatment plan of each of the many doctors we visited. We wouldn't have needed to be reminded why we crossed Dr. "Boob-man" off our list, but some of the others blurred more easily in our minds when we sat down to discuss how we felt about them. In addition, be sure to check out CCA's 1-Sheet Overview: 'Parent's: You are the Official Care Manager' for more tips on becoming your child's advocate and preparing for appointments.

  3. Enlist a support system to tag along. I was fortunate that my husband was able to attend all of our early doctor's appointments as we were choosing Aiden's team. I couldn't have done it on my own. There were times when my emotions got the best of me and I literally had to lean on him for support and vice versa. The process is exhausting and I always felt like I was forgetting something. Having someone there to pick you up after hearing some frightening statistics or unsettling description of a certain procedure was so important. Even if you have to ask a parent, a friend or a co-worker to go along with you for support, DO IT! It can never hurt to have an extra set of ears absorbing all the information and helping you sort it out afterwards.
  4. Get 2nd, 3rd, even 4th opinions. As I said before, once we realized that we had the freedom to actively choose our craniofacial team, we definitely took to it. No expense was too great - we would travel far and wide to find the best of the best. We started locally with the pre-made appointments from the NICU team, then headed to Chicago where we had heard some wonderful things about the team at RUSH. We were pleased with the craniofacial doctors, but our minds and hearts were crushed when we met with the plastic surgeon they referred us to. We had the first appointment of the day with Dr. "Disney" (I'll explain), however he kept us waiting for over an hour as he finished his morning swim (so we were told by his nurse). He barely looked at Aiden directly, threw the x-rays that we brought with us from a different doctor onto the light board and within 30 seconds determined that Aiden would only have 3 fingers and a thumb. We were devastated. But at that point, we hadn't heard any different so I had to assume that this information was Aiden's reality. He offered no real explanation, so as we prodded him with questions, he attempted to calm us down by offering this little happy nugget: "It's okay, Mickey Mouse only had 3 fingers too"! Thoroughly disgusted that he had just compared our beautiful baby boy to a fictional rodent, we acknowledged the fact this 2nd opinion was going to result in a 3rd.

  5. Trust your gut. Our next stop was Dallas and many of you know the exceptional team(s) available there. Feeling very discouraged, we tried to keep our spirits up and prayed we would find the best team for Aiden. As we began our appointment with our 3rd opinion, he took us to his office rather than a cold, white examining room. He asked to hold Aiden - something nobody else had done. He took the time to answer our questions without making us feel rushed. He was warm and sensitive to our fragile and exhausted emotions. Most of all, he seemed to know more than any of the others combined and explained it in a way that was on our level - not over our heads with crazy medical terms , or dumbed down as though we couldn't handle it. Ricky and I left that appointment, walked out the door to grab the elevator, and burst into tears. Our gut was telling us without a doubt that this was it. We knew we had our guy and we are still as happy with our decision now as we were that day.
En route to Dallas for Aiden's 1st surgery!
There are so many other factors that make choosing a craniofacial team so complex: insurance battles, travel issues, not knowing what course of treatment makes the most sense. All of those make it an extremely difficult process. 

With that said, I hope that if you are just starting on this journey, you are able to find some of the above helpful. And if you're further along on the journey, we'd love to add some of your advice and/or suggestions to this list. Leave a comment below!

Friday, June 3, 2011

The Need for Peer Support

I am so excited to attend the annual CCA family retreat this month. My family has been to four retreats but has missed the last two years. Our first retreat was in Nashville (2005) when Peter was just four years old and Jacob only six months. It was an amazingly fun and carefree time as well as educational and supportive. We met many families going through the same issues as we were, and Peter saw kids that had the same differences as him-- trach, feeding tube, one ear, etc. What made the biggest impression on me though was seeing all the kids together and how quickly they connected at all age levels. From toddlers to teens the interaction and synergy was intoxicating.

I also left that first retreat extremely impressed by the siblings of the CCA kids. I loved how siblings were included in all the activities, and I was very impressed with the level of maturity, compassion, and wisdom that all of these children and young adults possessed. It made me very proud to think that my boys will grow up participating and contributing to such a wonderful organization and cause.

Peter was seven years old at the last retreat we attended in Myrtle Beach (2008), and lately I've felt that he has been missing the camaraderie and support of his CCA buddies. He is starting to make more comments about his appearance, looking in the mirror a little harder, and vocalizing concerns about his teeth. The issue of needing peer support was even brought to our attention at his IEP meeting this year. Growing up is challenging and awkward for all kids but my heart really breaks when I think of all the extra things our kids have to tackle both medically and socially.

Attending the retreats will be a family priority in our house for many years to come. We all need it, we all benefit from it, and we all have a great time!