Monday, May 30, 2011

We want to hear from YOU!

As we continue to develop this site for craniofacial families, we would love to hear from you!

Please send us your input for the following:

  • Relevant websites/links you have found particularly useful throughout your craniofacial journey

  • Your personal blog/website -- please include the affected person's name, diagnosis and month/year of birth

  • Links to news articles, online stories or tv/film documentaries featuring your family and/or child

  • Books and reading lists addressing craniofacial topics

  • Products that have been particularly useful for any issue related to your child's craniofacial condition (eg. shoes/clothing, feeding supplies, developmental toys, therapeutic products)
In addition to the above, we are also really interested in hearing your thoughts about this blog. Let us know what you think and which areas you think will be the most useful. We are always open to suggestions! And don't forget to subscribe via email to receive blog updates directly in your Inbox -- just enter your email address in the box on the right side of the blog and you are set!

All info can be emailed to [email protected].

The "gray" area

By: Taryn

Sometimes it seems that I am stuck in a very unusual place - a "gray" area, if you will, between having a "disabled" child and one that is ultimately "healthy" but just happens to have some special medical needs. We hesitate to label Aiden as disabled because quite honestly, he isn't. He is developmentally on track. He can physically do everything his older brother can do. He has found ways to adapt using his special hands, proving many of our early fears wrong. However there are times when we find it appropriate - almost necessary - to describe his condition as a disability.

For example, we have applied for our state's Medicaid program, filling out countless forms asking to describe the unique medical needs of our "disabled" child. In these cases I find myself carefully accounting for every struggle, every surgery, every medicine he takes on a regular basis - to ensure we can receive the benefits that Aiden deserves. It's not fair to have our family's world turned upside down with a birth of a child that requires so much medical intervention, thus wrecking havoc on our once stable budget. We had plans to raise our kids in a quality of life as good as the one we knew growing up, if not better. My husband works his butt off for every penny he makes and with some intense financial planning, we've done pretty good so far. But that's not to say that all the zero's on the medical bills aren't still extremely frightening.

Other times, the "disabled" title is applied for us, when we least expect it. At the park when we see someone staring, at school when he can't cut with scissors like the other kids can, at the shoe store when we have to scour the racks to find the perfect pair that will fit his uniquely shaped foot, and then often leave empty handed. We are snapped back to reality that even though Aiden thinks, acts, plays and has feelings like the other kids, he simply doesn't look like them - and that makes him different.

It's difficult to find a balance between acknowledging his medical needs/physical differences and wanting our child to blend in like the "normal" child we know him to be. I want to celebrate his uniqueness and raise awareness, but never want to do it at the expense of his feelings by calling attention to something that ultimately might make him more self-conscious. It's a hard thing to wrap my head around sometimes. As Aiden grows older I will be able to take cues from him on how much or how little to address his craniofacial condition in everyday life. For the time being, I try to take comfort in the fact that Aiden is an extremely happy little boy and that is all that matters. After all, life isn't always black and is sometimes gray. And that's okay.

Friday, May 27, 2011

Making a Difference

Last week I had one afternoon where I set aside my to-do list and enjoyed the amazing wonder of my children. The boys, along with two friends, performed in the school talent show, and their performance brought proud tears to my eyes. They performed a skit called, “Beyond the Face is a Heart." On that stage, amidst all the singing and dancing talent, were my boys and their friends making a huge difference in their community. The performance was funny and profoundly impactful. To stand in front of an audience, talk and joke about your differences, and convey a message so important that it will change the way people think takes courage that most adults do not possess. On Friday, I witnessed four children ages 6-10 do just that. It was AMAZING!!!

What you choose to do with any given circumstance shapes the person you ultimately become. There are many times I have been told “absolutes” since Peter’s arrival. Things like “he will never learn to eat” or “insurance won't cover this.” These statements along with many others have been proven wrong. There are, in fact, no absolutes in this world. There is always hope. There is always possibility. There is always something you can do to make a difference. I want my kids to live their lives knowing that, and I think performing this skit was one of the best life lessons they’ve learned so far.

“You must be the change you want to see in the world.” Mahatma Gandhi

Wednesday, May 25, 2011

Send in your Questions!

Once upon a time, in a world far away, I used to be a biostatistician. I worked in medical research, as a data cruncher. I really enjoyed it, and I love all the questions and the information that occasionally leads to an interesting answer. Since we discovered that John has Crouzon Syndrome, I have had a few opportunities to head to the medical school and search through journals to find answers to specific questions. I have really enjoyed the handful of opportunities where I could help others find answers to their questions. So I would like to do that here. If you have a specific question or hypothesis regarding a craniofacial topic (medical, psychosocial, therapeutic, etc), please leave a comment. And like your teachers always said, the only stupid question is the left unasked. Maybe once a month or so I can post a research related blog.
I look forward to it!

Update on John: He is doing great 10 days out from surgery. The swelling has diminished greatly, he can see and that precious personality is quickly returning. He is a little hesitant to leap from the couch or run like a wild man on the playground, and that is just fine by me!

Friday, May 20, 2011

Tough Decisions

My head is swimming with information this afternoon. I'm once again faced with making an important medical decision regarding Peter's care. And, although it will be a mutual decision between myself, my husband, and Peter; I know that I will likely have the most influence on what we decide. In our family, I'm the one who takes on the overall care and coordination of Peter's care, handles all the insurance issues (and there are many), and does nearly all the transporting to and from his many appointments. Little brother often rides shotgun at all the clinic visits as well!

We are fortunate to have three excellent craniofacial teams within about an hour of our front door. Being the control freak that I am did not lend itself well to participating in a predetermined “team” that I didn't get to put together. The fact that a doctor different from my choosing might be part of the team that treats Peter did not pass my "Mommy Gut" approval. I wanted Peter to always see the same ENT, the same oral surgeon, the same cranio surgeon, etc., not just who was doing rotation for the month. So, I have created my own group of "Peter Specialists" where, of course, I'm CEO (there’s that control thing again!). This obviously has good and bad points.

Over the years I have gotten better at trusting Peter's specialists, in part because they have all proved themselves more than worthy of being part of "Team Peter." Together we have watched him grow and mature, dealt with his complexities with care and concern, and continued to build a relationship of mutual trust and respect. As Peter gets older, I will try to teach him how to begin taking charge of his own care. I'm guessing there might be a bit of a power struggle though. After all, he is my boy!

We would love to hear your comments!
How does your family deal with making tough medical decisions?

Thursday, May 19, 2011


John made it through his surgery just fine.  Now onto the healing process.  There is so much healing to be done. 

For those of us in the craniofacial world, there is the physical healing.  And although it is hard and may take many weeks, maybe longer, to move beyond swelling and the outward signs of the the trauma that has been endured, the emotional healing tends to be the more difficult process.  There is the fear, the anxiety, the is all so stressful.  And this is just for mom.  Healing the soul of my sweet little boy who has to go through so much -  that is much more than I bargained for when I signed up to be a mom.   
As a mom, I have found myself lost after these surgeries, I get so worked up before, and then as we move beyond them, I feel what might be described as a void.  I guess it isn't all that strange.  We spend so much time preparing, worrying, thinking of what all needs to be done and trying to plan for each scenario, that it takes some time to decompress.  And then I have discovered all too often, that once I do get to a good place, another difficulty presents itself.  They all seem to run together.  I am beginning to accept this as a life lesson.  
It is no mystery that all of this adds stress to a marriage and family. 
John has a 2-year-old sister, who is of course absorbing so much.  It is hard to know how to address major surgery with a 2-year-old.  She came to visit John while he was in the hospital and handled herself well, but it had to be confusing to see her big brother looking so swollen and with a somewhat sad, distant demeanor.  I know she will grow up faster than her peers.  I worry so much about how much to expose her to and how much to prepare her for. As she gets older, I wonder if this will be easier or harder.  I am so grateful John and RoryCate have each other, but I also know there may come a time when John's differences are hard for RoryCate to explain to her friends.  I hope we are there for her then.  I hope we are there for both of them to remind them how lucky they are to have each other.     
Marriage is hard as it is.  Add in children and it becomes harder.  Add in a child with differences and for us it has been much harder.  It isn't thatJohn, in his perfect little self, adds stress to our marriage.  It is how we respond to others responding to him that adds stress.  It is the financial strain.  It is the schedule, doctor and therapy appointments, that add stress.  And it is the acceptance of our unexpected parenthood that adds stress.  I have never understood how people can say, "My child's difference is the best thing that ever happened to me."  Although I do believe that Tate and I have grown as human beings through the past three years, seeing our child go through so much has broken our hearts, over and over.  We fully expect that John will grow into an amazing man, much like the amazing little boy that he now is.  We aren't saddened by the lot we have been given, we are blessed...but it doesn't mean that we wouldn't give anything and everything to somehow takeaway the pain that he has to go through, both physically and emotionally.
So that leaves me with John.  I know this boy so very well, but unfortunately, I can't be in his sweet little head to know exactly what it is he feels today.  I wish I had the words that were going through his head, and I wish I could comfort him in the most accurate way.  He has been so quiet in the last few days.  Not crying or complaining, but just quiet.  I miss his incessant "whys" and "how comes".  I miss his light, effervescent chatter.  Sheesh, I even miss his frustrating whining.  Oh how I hate that his little spirit was broken, and I pray that we can "fix" it and retrieve his precious personality.  I have faith that we will (he is one tough little cookie), I just wish we didn't have to.  

Wednesday, May 18, 2011

Addressing differences in public

Note: I am posting in April's place this week as she is with her son John while he recovers from his recent surgery. He is doing better every day and they hope to be home from the hospital soon :) 

Most of the time I wear sunglasses to the park...even when it's not sunny out.

My boys love to be outdoors and any place that has things to climb, slide down or swing on is an extra bonus. Not to mention that it's another place they can hone their social skills (example, "Hi I'm Ethan, want to play?") Ethan and Aiden are very sociable kids, one of the qualities they've picked up from two very sociable parents. However going to the park is also a place where I too am forced to work on my own social skills - the ones you don't learn about in Public Speaking 101 or at sorority parties. The ones that have to do with addressing your child's differences.

I have no problem talking about Aiden in casual settings. The issue is, most people don't know how to broach the subject, so it gets ignored. I'm okay with that, but it does make me feel a bit uncomfortable. There is no easy way of knowing how to bring up your child's differences with a complete stranger - no way of knowing if it is a subject they are comfortable speaking about, especially since you don't know if and how they've ever talked with their own child about others who may look different.

So I often find myself "on guard", hiding behind sunglasses so I can safely scan the room for other's stares directed at my son. When I catch someone looking, it's like a dagger to my heart. I just want to scream - let me tell you about him so you don't have to wonder. But that's not always appropriate or easy to do.

After I wrote this post on my personal blog about a positive experience I had out in public, I began thinking about how I could ease the tension of social situations when I don't know what to say or how to say it? My grandmother, who recently passed away, was always full of wisdom and she emailed me a suggestion after she read that post. This is what she said:

Why don't you write the main facts about Apert Syndrome - briefly catalogue doctors visits, surgeries etc and make it like an outline or a story - either generic or personal (basically, just the facts ma'am). People never know how another person will react to a personal question but they would still like to know so to avoid embarrassment the curious person says nothing but will go home wondering what happened to that little boy. Carry copies with you and when out in public when you realize that the onlooker would like to ask a question but is afraid of offending you, hand them the outline with a big smile, and say thank you for caring, take this home and read it, it is information about his condition which is very rare and makes him SPECIAL.

I sat on this for a long time. I've read about many families who shared brochures or letters to use for their child's school or in other organized settings, but I wasn't sure if it would be a bit too much for the general public. However, I knew having something to share in such situations would help me speak up for my child if I felt he needed it, encourage others to ask questions and ultimately provide an opportunity to further awareness about craniofacial conditions.

With my grandmother's words as my inspiration, I came up with the following solution. 
I decided to take advantage of a coupon offer for 250 customizable business cards for $3.99 through Vistaprint. On the cards, I printed the following message: 
[If you cannot view the image, I've included the text here]
Hi! We are the Skees Family - Taryn, Rick, Ethan and Aiden (
Our youngest son was born with a rare craniofacial condition and we hope to
raise awareness within the community.
We understand that you or your children may be curious or have questions -- and that is okay!
We welcome the conversation :) Or, check out our blog to read more about our special little guy ( and our family.

I haven't yet received the finished product, and I'm not even sure I'll get the guts to use them when I do. Perhaps I'll just know when it's the right place and the right time. And maybe just having them in my purse or back pocket will give me the courage to slip off the sunglasses and enjoy my time with the boys at the park :)

I would love to know your thoughts on this...How would you react if someone gave you this while out in public? Do you think this is an appropriate way to bring up your child's differences in social situations? What are ways you have handled similar situations? Leave your comments below!

Monday, May 16, 2011

Make time for yourself

One of the most shared pieces of parenting advice is to "sleep while your child is sleeping".

With 2 boys ages 3 and 4 who are just 11 months apart, one of which has Apert Sydnrome, it goes without saying that the first few years of their lives were quite a challenge. Especially when it came to getting them both to sleep at the same time, which happened very infrequently. And if by some miracle they decided to cooperate with a coordinating nap-time, I found it almost impossible to ignore the piles of laundry, stack of unread mail and unkempt kitchen to retreat to my warm bed.

Most of the time I find myself trying to cram as many chores into their nap-time as possible, and when there are still things left on my to-do list after they wake, I admit that I (sometimes) end up ignoring the boys to try to make a little headway. After all, there are appointments to be made and insurance companies to contact which can only be done during the day.

The boys attend preschool twice per week which has been extremely helpful when it comes to getting things done. And although I should take more time on those days to kick my feet up and give my mind a break, I rarely do.

My husband Ricky is an amazing support system. He can sense when I'm overwhelmed and will help ease the load by straightening up around the house after his workday is over or offering to walk the boys to the park for an hour or so. I think it is so important to have that kind of support in your corner - whether it is a spouse, a friend, or a family member.

To celebrate our 6-year wedding anniversary, Ricky and I are heading to San Antonio this coming weekend. My dad is flying in from Kentucky to watch the boys which makes it less stressful knowing they are in good hands with a family member. When we return, I head to Dallas for Aiden's next surgery so we are hoping to really decompress on our getaway to gain some energy and perspective for the following weeks events.

For a parent of a child with special needs, the advice of "sleep while your child is sleeping" is probably going to go ignored due to the constant list of things that need to be done to coordinate their child's care. Instead, I believe everyone should be encouraged to truly carve time out for yourself. Take a morning run before the kids wake up. Schedule a monthly pedicure. Or forgo the pedicures, save some cash, and plan a weekend "stay-cation". Give yourself a free pass and don't feel guilty about it.

And for the first time in a long time, Ricky and I plan to do just that!

How do you make time for yourself?

Friday, May 13, 2011


When Peter was a baby I never really thought too much into the future. We were simply too busy trying to survive from day-to-day. Coping with the emotional rollercoaster of caring for a newborn with complex medical needs and grieving over losing the life you had imagined just doesn’t leave much time to think about life 5-10 years down the road!  But, here we are ten years later with Peter now in 4th grade. 

What has taken me most by surprise is how many issues we deal with at school. I was always so focused on making sure that Peter’s medical and therapy needs were met that I never gave school much thought.  Homework and socialization issues, however, take up the majority of our current daily life. If there is one thing I’ve learned over the years though, it’s that you can only work on so many things at one time. Spending hours on homework every night doesn’t do anyone much good, especially if it ends in total frustration. The constant struggle of when to push harder and when to back off is always an issue in our house.

In dealing with these problems lately, I’ve thought back about when Peter was a baby and how he always achieved milestones like rolling over and crawling in his own good time. Remembering back is helping to keep things in perspective now. Issues like social maturity and eating normally are going to be accomplishments that he has to take the lead on. Once again, I have to let go of who I imagined my son would be at the age of ten. I can influence his values and nudge him in certain directions, but, in the end, he will have to find the motivation to achieve what he really wants out of life. It is my sincere hope that he reaches for the stars because I know what an amazing miracle of a person he is and how much he can achieve in life, if only he tries.

Click here to read more info about Dede and her family.

Wednesday, May 11, 2011


On Monday, May 16, my little man will be undergoing his second cranial vault. At 4 years old, this is much different than at 17 months old (see here for details of John's June 2008 surgery). In many ways, as a baby, this was much easier. No prior preparation for John was needed. My biggest worry as far as how to get that sweet baby through the biggest day of his life, was how to provide enough distraction so he wouldn't realize he was missing breakfast and lunch before his 1:00 surgery. At that age a paci and lovey were absolutely magical soothers, and as long as John was being held by his mom or dad, he was A-OK.

When we discovered in January that John would need this surgery in a few short months, the first thought that came to mind was "this is the end of his innocence." John LOVES going to the doctor; we have some amazing ones. He loves staying in the hospital and loves the adventure of sleep studies, loves the attention, the popsicles, the playroom. So far his only hesitation comes with goofy juice, or Versed, not because he's afraid, but because it just tastes so awful. But with all he has on his plate this year, I just knew he was old enough to understand more, and anticipate more and, like his mom, worry more.

A few weeks after the big news, John had minor surgery on his eyelid, a tarsorrhaphy. And the kid was a stinkin' pro. Since, we have talked a lot about what to expect with his vault, or more specifically fronto-orbital advancement. He doesn't remember his, but he looks at pics from 3 years ago and understands. Since he's visited other children after they have undergone similar surgeries, he knows there is swelling and bruising and a big incision across the top of the head. John knows that his surgeon is making room for his brain, removing his "horn" (a bump in his skull on top of his head), and making it so that his "eye won't pop out again." He gets it. He is ready.

Every day John asks me, "How many days until I get to go to the hospital?" He can't wait to drive to the hospital in the dark. He is so looking forward to Popsicles. More than excited that Daddy will be taking the day off from work. He knows he might not be able to see for a couple days with the swelling, but he knows that his mom or dad will always be there with him and he knows it will get better soon. He is looking forward to listening to his books on tape. He is not really looking forward to the goofy juice, but we have a plan. I really can't ask more of this little guy.

Who knows, he may not handle it as well as he has everything else. But I think he is as ready as he can be, and I know he is making this easier on his parents than it should be. John is amazing, my little super hero.

Now, as for preparing myself, that is a different story.

Click here to read more info about April and her family.