- 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)
Monday, May 30, 2011
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 white...it is sometimes gray. And that's okay.
Friday, May 27, 2011
“You must be the change you want to see in the world.” Mahatma Gandhi
Wednesday, May 25, 2011
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
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!
Thursday, May 19, 2011
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 helplessness...it 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.
Wednesday, May 18, 2011
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:
Monday, May 16, 2011
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
Click here to read more info about Dede and her family.
Wednesday, May 11, 2011
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.