when your world falls apart

There is a fog that I've been fighting for a few weeks, months, not exactly sure. It's crept up slowly but steadily until it's presence can no longer be passed off as something I can easily wipe away each morning and focus fully and clearly on my day.

I'm tired. Exhausted. Emotionally and physically. It is a constant struggle for me to get through each day with my head held high and a positive attitude in my pocket. I am okay - in the sense that you may be wondering about me now. I am okay - in the broadest sense of the term. But yet I'm still hurting. And fumbling through the grief, fears and worry that became a part of my life a little less than two years ago.

Sometimes I catch a glimpse of myself in my wedding photo hanging on the wall in my family room. I find myself staring at it, at the picture of me - carefree and hopeful with my hair swept off my shoulders and a butterfly (the world) in my hand. I looked beautiful. And I'm not saying this to sound conceited. I'm saying it because I felt that way. I was at my best.

I hate so much that looking at those pictures from one of the happiest days of my life often makes me cry. I see the look in my eyes - the pure and unknowing strength and confidence to take on whatever life might possibly throw my way - and I think about where I am now, what I've endured, how naive I was to think that life could always be that innocent.

I spent 4.5 weeks on bedrest when I was pregnant with Ethan. A little longer during my pregnancy with Aiden. And each and every day from the moment I saw the two pink lines (or in Aiden's case the digital "Pregnant"), I prayed for a healthy child. 'Do you want a boy or a girl?' people would so predictably ask in the supermarket, at the doctors office, at work. 'It doesn't matter to me,' I'd reply. 'As long as it is healthy'.

The night Aiden was born I was unforgivingly introduced to a world that was so foreign to me. Medical terms and jargon that had no place in my life nanoseconds before his arrival became commonplace.

Anomoly. Craniofacial. Craniosynostosis. Syndactyly.

Words that once carried no meaning now seep out in everyday conversations. The night Aiden was born, for the first time, I fully understood the phrase I had been known to dramatically shout to my parents during my teenage years when I couldn't go on spring break or stay out past midnight. "Life is so unfair". Little did I know.

Surprisingly, I was able to hold it all together quite well during the months after Aiden was born. In fact it never really crossed my mind to become depressed or to wallow in my pity. I was resolute. Determined. Steadfast in my thinking that a positive attitude would help me get through it all and that in itself would benefit my son to the greatest degree. It took me a long time to realize that during that time my whole self was on auto-pilot. I didn't think about being depressed because I didn't have time to. There were doctors appointments, surgeries, geneticists, tests. But no time to deal with what was going on all around me. I was strong. Still am. But with several months of not having to worry about every runny nose and whether or not it will stand in the way of my little boy having his next operation to give him separated fingers and toes, I now have the time to turn my thoughts on other things. Like being depressed.

I guess you could say I am one of the lucky ones. I recognize that with all the ways my life has changed over the past two years I am pretty high up on the risk list for becoming depressed. So when I began crying more that I smiled and having stress-related chest pain that no healthy 28 year old should have, I pretty quickly self-diagnosed the fact that I might be battling more than just a case of the "blues".

When your world falls apart, no matter what brings it about - the loss of a loved one, a miscarriage, a divorce, a diagnosis - it is pretty common to experience the seven stages of grief:

1. Shock and denial
2. Pain and guilt
3. Anger and bargaining
4. "Depression", reflecting and loneliness
5. The upward turn
6. Reconstruction and working through
7. Acceptance and hope

I seemed to have teetered through the stages and even "moved on" to the next, only to re-experience one of them once again several months later.

Obviously not knowing about Aiden's condition provided the shock factor when he was born. And denial wasn't too far behind, although I think I "accepted" his diagnosis more quickly than any amount of denial lasted. The pain and guilt is a real stickler. I feel pain everyday for what Aiden has to go through. And any mother will understand when I say that no matter if its a stubbed toe, a splinter or in my case, an extremely rare genetic disorder (ha!) there is a level of guilt that only a mother can experience. It somehow feels like your fault. Even when the logic in your head and every bone in your body knows it isn't. You find yourself saying 'If only I'd...' this or that 'then maybe this wouldn't have happened.'

That led me right into the anger and bargaining stage. During my pregnancies, I ate right (granted I understand that my craving for Sour Patch Kids was probably not super healthy). I started taking pre-natal vitamins several months before I knew we would try to become pregnant (and with Ethan being only 3 months old when I got pregnant with Aiden, I hadn't even stopped taking them yet)! I read every book. I followed every piece of advice. I stayed away from deli meat and stopped drinking caffeine.

I. Did. Everything. Right.

One could say that thinking about that made me angry. Very angry.

I doubted God. I stopped going to church. I found extreme irony in the fact that our parish priest couldn't console us during his visit to our hospital room when Aiden was born because I was so angry at all things religious that it only made sense that this wise man of God couldn't find the words. That proved it. It had to all be a farce. God musn't exist.

For the next several months I think I spent most of the time going back and forth between stages two and three. Then I quickly entered stage four and have probably spent more time there than I even realize or care to admit. However I do feel that I'm slowly approaching the "upward turn".

When you think of grief in stages, it gives you a roadmap that helps you understand your feelings every step of the way. When my world fell apart, I somehow mustered up the strength to ignore my grief and get through some of the most difficult life experiences I hope to ever encounter. But I've learned that it is only after weathering the storm that you finally start to assess the damage. I'm no longer in shock. I don't deny what has been chosen for me and my family. Guilt, I'm done with. I'm through blaming myself. But pain, anger, I'm not sure that will ever subside.

Aiden has proven so many of our fears wrong. His future is much brighter than I ever would have thought when I was just starting to digest the medical information given to me after his birth. I am more than hopeful. I am proud.

I am happy. I love my boys more than life itself and the love that my husband and I share is immeasurable. I am very blessed. And I do know that God does exist and he does have a plan for me, for Aiden, for my family.

It is for those reasons that I am allowing myself to move through each stage of grief rather than fight it. I have no doubt that I will get through this rough patch and will start to see the rainbow - it's just a matter of time. Because if there is one thing I've learned from my family, it's that when your world falls apart, you just have to pick up the pieces, put them all back together, and move on. With their help of course. :)

Our next trip to Dallas

Aiden and I will be heading back to Dallas January 4th for his 1st annual MRI, sleep study and check-up appointments with the various doctors on the team at Medical City.

We're hopeful that all tests will prove normal, as we haven't had any major issues or concerns since his last surgery in May.

The MRI will check for the presence of any pressure or swelling in the brain. The sleep study evaluates his breathing (oxygenation, apnea episodes) and general sleep quality. The other appointments will follow the growth of his head, his developmental progress and the healing process from his previous surgeries on his hands, feet and head.

I'm making the trip alone this time, but I will have my "family away from home", the Gorman's, to spend time with. I will stay the first night at the hospital with Aiden for the sleep study, then we will both be spending the second night with April, Tate and their kids John and Rory Cate. Now that Aiden is walking, it should be fun to see the kids play together!

My Sunday alarm clock

Early this morning I hear Ethan's door fling open and the pitter patter of two tiny feet running across the hall into our bedroom. He climbs up and squeezes in between us. He snuggles up next to me. He whispers into my ear "Mommy, you're beautiful". I melted.

Best wake-up call ever.

Little Fire Big Heart update

The date is set, the location has been paid for...now we need YOUR help!!!!

The LFBH committee is getting ready to send out sponsorship requests to many local and national companies. If you or your employer would be interested in learning how they may be able to help support this important cause, PLEASE PLEASE let me know. My email address is tarynskees@gmail.com.

We are hoping to get atleast 2 or 3 major sponsors that will help us reach our goal of raising $10k for Children's Craniofacial Association. I have all of the information organized into sponsorship packets that I can send to you at your request. No amount is too small!

If you/your company are unable to sponsor, please consider what you may be able to contribute to the silent auction. Gift cards, unique homemade items, sports memorabilia, sporting/entertainment tickets, merchandise items and/or baskets, services, etc. Every donation can be tax deductible - so show me what you've got!

We're hoping to make the first annual Little Fire Big Heart event super successful and we can't do it without the help of our friends and loved ones.

Visit www.littlefirebigheart.com for more details! Hope to see you all there next September!

P.S. - thank you to those who have already given to our cause through ticket registrations and FirstGiving donations! It means so much to our family :)

Moving right along

Aiden is now 20 months old. With his physical differences and surgery down-time, he continues to develop at his own pace. A little delayed, but developing normally nonetheless.

He army crawled and we were happy, but we thought we'd never see the day he would crawl on all fours.

He crawled on all fours and we were happy, but we thought we'd never see the day he would pull to stand.

He pulled to stand and we were happy, but we thought we'd never see the day he would take an unassisted step.

Now he's walking like a champ and pumping his little legs to almost running speeds, climbing up the steps to the second floor and hoisting himself onto the couches.

We started therapies with First Steps when Aiden was just a few months old. Mary Ann, Jennifer and Stuti have all been a part of our lives for a little more than a year now.

Mary Ann, his physical therapist, comes once a week to work on gross motor skills (started with sitting up, rolling over, then progressed to crawling, walking, stairs, etc.). It's apparent that she's done her job well. We are very pleased with his progress. In fact, now that he's walking, I'm not quite sure how much longer we will need to continue this therapy.

Stuti, his occupational therapist, visits Aiden twice weekly. She helps to develop his fine motor skills through interactive play, oral motor exercises and self-feeding work. Right now we are working a lot with strengthening his mouth muscles with activities like sipping applesauce through a straw and massaging his cheeks and tongue with an electric toothbrush. Things I never would have thought of on my own. That's why they're the professionals. And that's why Aiden is thriving.

Jennifer is Aiden's developmental therapist. Or I should say "was". As of this past week, I'm happy to announce that it was decided that because of Aiden's progress and accomplishments in the last few months, developmental therapy was no longer deemed necessary. This was a hard decision to make - considering that we want to make sure we are doing everything possible to help Aiden in the long run. But the many initial worries I had about Aiden's cognitive development have been put to rest lately. He's doing everything a child his age should be doing (give or take - some things he still needs to learn, other things he's ahead of schedule).

Although we are ending developmental therapy, I've decided that speech therapy is the next step. Aiden's vocabulary is extensive. It includes over 15 signs, a handful of words, he imitates dozens more and understands almost everything we say. Now I want to address the fact that he is not vocalizing words very often and when he does, not clearly or accurately for the most part. Kids with Apert Syndrome typically have speech delays for a number of reasons, including the developmental delays from surgeries and hospital stays, the anatomical differences in the retrusion of the midface, high/arched palattes, etc. I'm confident that with the extra help of a speech therapist, Aiden will progress in this area just as he has everything else.

So, needless to say we are extremely proud parents. And we are extremely grateful for the help he has received along the way.

In summing up Aiden's achievements, it reminds me just how lucky we are to have such a strong support system of dear friends and family in our lives. We are truly blessed. Aiden is proof.

PS - And of course, Ethan is a blessing as well. He's smart, affectionate, energetic and...all boy. Here's proof. I Have no doubt that he will be an excellent role model for Aiden :)

Making Lemonade

So yesterday I read a comment on one of my blog posts from a friend of a friend in Florida who nominated me and More Skees Please for a Lemonade Award. I didn't know what it was until she sent it, but I am quite honored that she did.

The Lemonade Award is given to bloggers who show a positive attitude, gratitude and a willingness to share their ideas, support and online friendship. In other words, people who make lemonade when they get lemons!

The rules of the award:

1. Put the Lemonade logo on your blog within your post
2. Nominate at least 10 blogs with great attitude or gratitude
3. Link the nominees within your post
4. Let the nominees know that they received this award by commenting on their blog
5. Share the love and link to the person from whom you received this award

So, without further ado...



Here are my 10 blog choices (in no particular order):

- All Access Pass to Jack
- The Tater Tot
- Berryman Berryman
- The Buzz on Izzy
- The Dowd 4
- The Spohrs are Multiplying
- The Life of Brian
- The Rast Family
- Sids Awesome Adventure
- Super Sanborn Family

The above choices were pretty easy for me. All of them are inspiring. Many of them are other families with a child that has Apert Syndrome, like Aiden. Without their kind words, nudges of optimism and friendly advice over the past 20 months, I don't think my family would be where we are today. Others are friends and/or acquaintances that simply know the burden of raising a child with "special needs" and nurturing a family that doesn't dwell on that fact. And a few are even people I have never met or introduced myself to, but to which their blogs I have stumbled upon through others links and continue to follow their journey because their story has captured my heart and reeled me in.

Each one of the links above are a daily inspiration to me. We all have very different journeys. Our lives are no more difficult than the next - we're all doing the best we can. We're all making lemonade from the lemons we are given. We aren't super heros. It's just the only thing we know how to do.

Thanks so much Carly for the nomination! You are one of those amazing inspirations to our family. Your girls are just beautiful and they are very lucky to have you! :) Keep up the good work!

It's official - we really ARE great parents!

The other day Ricky told Ethan that he would get two special prizes if he started going (pardon my mommy talk) "pee pee and poo poo" on the potty. (Come on, don't tell me you haven't resorted to bribery during the potty-training process).

Then, out of nowhere, Ethan went up to Ricky, stroked his cheek and said "Stank you! You are a good daddy!" (if you couldn't figure it out, "stank you" is Ethan speak for "thank you").

And today, I don't even recall what I did to deserve it, but we were in the kitchen and I did something that must have been pretty cool and Ethan wrapped his arms around my legs and said "You are GREAT"!

There are many moments in this parenting journey that I want to pull my hair out, mix a drink before 5pm or both, but then there are the moments that make your heart smile so big. All of the doubting I do on a daily basis (you know, "am I really cut out for this?" "are my kids going to be normal?", etc. etc.) are wiped away in that single moment.

In what other position do you consider the praise from a 2 year old to be exactly the reassurance that you need to know you are doing a good job? I love it.

And I will remind him of these very occasions when he's a bratty teenager saying he hates us. :)

Ready for a slow down...

Wow - it's been a crazy busy couple of months for our family. Between attending weddings, being in weddings, taking trips for business and pleasure, and visiting out of town family and friends, we haven't been at home for an entire weekend since...are you ready for it...JULY!

So with most of those things x'ed off our busy calendar and not a whole lot on the horizon, we're ready to settle in and have some down time sipping cider on the couch and watching our favorite shows.

Don't get me wrong, I have thoroughly enjoyed every minute of our packed schedule. It's just that we were starting to get a little frayed. With the holidays just around the corner (umm hello, since when do stores starting putting out Christmas decor before HALLOWEEN???), this little rest in activity couldn't have come at a better time.

I'm exhausted just thinking about all of the things we've done let alone the task of blogging about each one of them. So instead I'll just inundate you with pictures recapping it all.

Enjoy!

Angie's bachelorette party (my cousin from Chicago)
Angie's wedding
Alexa's Appeal (CCA benefit we attended in California)
Jen's bachelorette party and shower (my friend from college)
Jen's wedding
Kinman Farm with the kids

PS - when I get all my ducks in a row (unpacked from all trips, mountain of laundry sorted, etc.) I will post updates about the kiddos :)

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