Never Grow Up

I often find myself in a cycle of emotional thinking when it comes to my children, and especially relating to the journey we're on with Aiden's craniofacial condition. Obviously there are a lot of ups and downs and for the past few months - even year or so - we've been lucky to have found ourselves in a very comfortable, even-keeled ride. No recent surgeries. Settled into our new home in Texas. Making great friends. Love the boys school. Things are good - great even.

But it is times like these that I begin to think about the future. With this sense of happiness comes the reality that things may not always be this way. When will things come crashing down? We already know that Aiden will endure more surgeries - one is coming up this May. We can mark it on our calendar and prepare the best way we know how. And while we will always experience fear surrounding any procedure he will undergo, from previous experience I know the strength in me as a mother will somehow take over and get us through.

It is the fear of the unknown that sometimes creeps up and effects me. Everyone loves Aiden. His bright eyes and wide smile make it impossible not to. His charming personality and infectious laugh make it easy for others to see beyond his differences. He is a child. Innocent. Naive.

But what about a few years down the road when kids start teasing him? Or when he's an adult and his smile and laugh no longer prove a barrier to the harsh judgments of society? Will he like himself? The way he looks? Will he battle depression? Make friends? Find his niche in life? Get married? Have children (or adopt, as he will have a 50% chance of passing on Apert Syndrome to any offspring)? How will my boys relationship change? Will Ethan ever resent having a brother who isn't "normal" like him?

I know it is not helpful to worry about things out of my control. And the future is definitely that. But it is one aspect of raising a child with a difference that is much too difficult to overlook. I cling to the happiness we have right now and pray each night that it will sustain for many years to come. I know I'm strong enough to endure the ups and downs. I just have to trust that the way we raise our children will ultimately give them the strength to overcome life's hardships in years to come.

As much as I want to see my children grow, develop and continue to succeed, part of me wishes they could stay this little forever.

Snow in Texas...this time it was real!

So much for fleeing cold and blustery Indiana for warmer climates. Guess we should have considered Florida.

To Know Love

I've been fortunate enough to experience love in many ways throughout my life. I grew up in a very loving household with strong relationships with both my immediate and extended family. My sister and mom are my best friends, and my cousins and girlfriends are like my sisters. My father worked hard, giving us many opportunities for travel, extracurricular activities and a life that I cannot complain about.

Aiden update

Things have been really good since the move to Texas - Aiden loves school, he is getting ready to celebrate his 3rd birthday and his development continues to be on track. Before the move I contacted the program director in Texas for the Early Childhood Intervention to get services arranged without delay once we got settled. We continued with speech therapy once/week and developmental therapy twice/month with great results.

As his birthday approaches and the ECI program services prepare to end, we scheduled his IEP evaluation to determine if/what services Aiden would need to receive going forward. The eval took place in a preschool room with books, toys, art supplies, etc. with an "Educational Team Lead", occupational therapist and speech therapist present. Basically they observed Aiden as he played and asked him to complete specific tasks that would demonstrate his abilities related to some of the areas of concern (fine motor skills, language comprehension). He was a bit stubborn throughout - but overall I'd say he nailed it :)

At the conclusion of the meeting, the team convened and discussed with me their impressions. It was decided that despite Aiden's "diagnosis", they felt that he either met or exceeded the developmental criteria for his age-group. Can we get an AMEN?!?!? What a huge success for Aiden - and a huge relief for us.

We have worked really hard to push for the right early intervention services, and have attempted to implement what he's learned in those sessions throughout Aiden's everyday routines. I think his success is also a testament of the relationship he has with his big brother. Even when Ricky and I are too tired to "teach", Aiden always has a lot to learn from Ethan, and Ethan is always willing to take on that role. During one of our first visits to Dr. Fearon, the craniofacial specialist, I remember asking what was in store for Aiden intellectually, and he told us that every child with Apert Syndrome is different - typically they range from mild developmental delays to normal intellectual abilities - but sometimes there are instances where mild to moderate mental retardation is possible (usually from the lack of medical intervention to prevent such from happening). We were heartbroken and yet positive at the same time, asking "Do you think it will benefit Aiden that he has a big brother so close in age?" Dr. Fearon was vague in his response - it may or may not help. We didn't plan to have them so close together, but I think God knew that Ethan would embrace his role as a super-sib when He decided to give us Aiden, which is why things worked out the way they did.

So we will continue to incorporate learning opportunities into Aiden's everyday "playtime" and encourage the relationship and bond that the boys have developed. Aiden will need to have a 2nd set of tubes placed in May, along with a corrective hand surgery scheduled at the same time to straighten his right index finger (it is curved at a 90 degree angle due to the severity of the fusion prior to the intital separation) and to fix a re-growth of one of the skin grafts between the same index finger and middle finger. We will keep both boys in preschool until just before we leave for Dallas. Then our plan is to head back to KY/IN for a few weeks of family visits and the CCA retreat. Once we return, we may have Aiden evaluated to make sure he is continuing to excel without therapies. And at that time we will decide if we want to schedule him with private therapists to improve certain skills. In addition, IEP evaluations will occur once/year to determine his eligiblity for services within the school system as he gets older. While we are excited that he is doing so well right now, we understand that he will most likely require additional intervention once he enters elementary school to address things that he may have trouble with like writing, typing, speech articulation, etc..

But for now - we will enjoy some downtime :) And we will continue to be amazed by the blessing in our family that is Aiden!

Bust with a "Capitol" B

We've been practicing Ethan's two special songs for school for the past week and half around here. He nailed spelling "Texas" and memorizing the words. He's been hopping up on the coffee table and treating us to impromptu performances. So when the day finally came for him to attend "Pre-K Kids Day at the Capitol" downtown Austin, we happily followed the bus full of 3 and 4 year olds, cameras (and gloves) on hand.

When we made it inside the beautiful rotunda, we saw Ethan looking rather unhappy. He had a pitiful look on his face that turned into full-blown tears when he caught glimpse of us. He wanted nothing to do with standing in line with his class and no intention of singing his well-rehearsed tunes. We tried bribing him with promises of "special treats" afterwards - no such luck. There was no turning his frown upside down.

The class was called outside onto the south steps of the Capitol building and introduced to the educational professionals who were attending the press conferences and other activities. It had been decided that, because of the 45 mph wind gusts and extreme cold front that had changed our previous days 75 degree weather to 28 degrees overnight, the kids were just going to stand outside long enough to sing 1 of the 2 songs. Although my kid was crying still, I thought he would settle down and participate once everyone was lined up on the steps. Plus, I was proud of myself that I remembered to grab him some gloves so his hands wouldn't be cold - good mommy points right? Wrong. It totally backfired. They passed out little flags for them to hold and the gloves made it hard for him to hang on to it. More tears came aflowing. And continued to flow - while all the other kids started and completed singing "This is Our Flag".

My kid was THAT kid.

I have to say we were a bit disappointed. confused. He just wasn't himself and I just wanted to hold him. But I had to walk away from him after they were done so he could finish up the rest of the day's activities for his field trip.

On the way home, it dawned on me that he was probably hungry. Ricky woke up early this morning after a night of things banging and clanging in the wind last night and called the school to find out if the gig was still a go. The school said they had decided not to attend because of the cold weather and wind. So I let Ethan snuggle in bed with me a bit longer than I would have and told him I'd eat breakfast with him at school. But when I got there, they had decided the field trip was still going to happen, so I hurried him into his classroom where they were getting on their class shirts and jackets, completely forgetting about getting him some food to eat. (Bad mommy points, right?) And it probably doesn't help that he has an ear infection. Infected ear + 45 mph wind = no good. Poor kid.

The singing was a bust with a "Capitol" B. I just hope his day has gone better.