Fueling Your Body For Post Surgical Recovery

I am always looking for innovative ways to keep my food intake in check. I eat little processed food, or sugar. I mostly consider myself a paleo with a dash of grains. This is a choice I made with some of my doctors because they know eating good fats like avocado, olive oil, and coconut oil with proteins and vegetables can decrease the amount of time it takes for my body to recover from surgery. I'm am far from perfect at this way of life. Still, I want my body to be running as optimally as possible, thus a low inflammatory lifestyle is required. 

But how do you do this when you are on a post-surgical liquid or soft food diet? Most recommended foods are overcooked pastas, ice cream, pudding, applesauce, Ensure, and foods that are filled with sugar. Yuck! Thankfully there are more options out in the forms of protein powder that are plant-based and animal-based protein. You can find those at Whole Foods or any natural health food store. Your pharmacies may carry them in the vitamin aisle. 

Additionally, our friends at Real Food Blends make a solid, great product specifically made for the people that are fed through a tube. 

Another option that my friend and cousin told me about in advance of my upcoming surgeries is Splendid Spoon. This is a meal kit, delivery service website that provides you with smoothies and soups made from natural, nutrient-dense quality ingredients. I plan on trying Splendid Spoon to let everyone know how the service and food is. 

This post is not an advertisement for either of these brands. It is only an endorsement for all of us in this community to eat well during times when nutrients and eating whole foods ought to be a high priority: while we are healing from surgery. 

What are ways that you have used to fuel your body after surgery or in your day-to-day life with a feeding tube or liquid diet? Recipes are very welcome. Please leave your responses in the comments, so I can follow up on them in a future blog post. 

Why You Should Write & Some Writing Prompts From The Mighty

I am sure you are wondering...why, Kara, do you share these writing prompts every month? What is is with your obsession with these prompts? Where are the fun stories and information about fundraisers? Well, let me explain. I like to share these writing prompts from The Mighty because I think it is a nice way to frame or begin a writing practice AND to do some self care.

Writing helps me organize and understand my emotional, physical, and mental worlds. Many times people do not know where to start. These prompts provide that starting point. You do not need to post what you write on the internet. Heck, you do not need to even write sentences. You can always pick up a scrap of paper, open your phone to the voice memo or notes app, or pick up a napkin and just start pouring your words and thoughts out of your mind.  The act of writing is the act of perspective making. You are reorienting yourself to your problems, moving them from mind to pen, computer, or smartphone.  You can analyze them if you wish, or just leave them aside, safe, locked away in your phone or in a folder, or notebook. Now you  may be able to be able to sleep more soundly, or figure out patterns that you did not realize you were repeating. So much can be learned. Ultimately, those sometimes toxic thoughts are out of our bodies where they may be causing additional suffering. 

It is time for some Spring cleaning! Get to work! If something worth posting to The Mighty comes out of this exercise...Great! If not, do not despair. You are courageous in just taking the time (5, 10 minutes or more) to get those thoughts and emotions out of you and into perspective. You have chosen to move toward healing and positive thinking. Your body will thank you!

-Kara J. 

Without further ado...here are May's writing prompts from our friends at The Mighty 

1. Sometimes, even during life’s hardest moments, humor can make it all seem a little easier. Describe a moment related to your condition that turned out to be funny (to you, at least). How did you find the humor in this situation, and why is it a memory that’s stuck with you?

2. May is Mental Health Month, and we’re using it to answer the question: What do I need? It’s deceptively hard to answer. Sometimes, you don’t even realize what you need until someone else gives it to you — whether in the form of a gift, a helping hand or a simple text. Tell us about a time someone gave you something you didn’t even realize you needed. Why did it help you?

3. A major part of having a diagnosis or caring for someone with one is often feeling isolated in your circumstances or feelings. If you relate, describe a moment you felt alone in a challenge. How did you deal with this? How did your loved ones respond — or, how do you wish they had responded? What advice would you give to someone looking to help a loved one who shares your condition?

4. Have you ever heard a song lyric that made you feel understood as you go through your health journey? Share the lyrics, and if you can, describe the moment you first heard them. Why do they resonate with you?

5. Describe a symptom of your or a loved one’s condition that at first you (or more likely your doctor) blew off as “no big deal” but later realized was a big deal — or at least something you should be treating. How did you navigate this diagnostic journey? Did loved ones and medical professionals believe you?

#FlashbackFriday: Self Care for the Caregiver

By Jeannie Ewing 

This post written by CCA mom, Jeannie Ewing in November 2015, is an important read for all those parents, spouses, uncles & aunts, guardians, and special friends out there taking care of people suffering with chronic medical issues. CCA salutes all of you for your dedication and love. And now, without further ado, here are some ways to show yourself some love. 

***

I think every caregiver knows that “we can’t care for others until we first care for ourselves.”  It has become a cliché of sorts in the caregiving community, and yet we are so poor at implementing it ourselves.  The head-heart connection is somehow lost upon us as we move from one crisis to the next, just barely keeping our heads above the water.  It might be helpful to list tips on self-care, but we all know we need to eat right, drink more water and less alcohol, quit smoking, sleep at least eight hours per night, and exercise daily.  What more can be said?

Self-care begins with self-love.  If we truly possess self-worth, then we are willing to prioritize loving ourselves back to health.  It’s no surprise that caregivers are more susceptible than the populace to divorce, chronic disease, and substance abuse.  So how do we rise above that statistic and overcome the odds?  Quite simply, it begins with believing we are worth caring for and then extending love and mercy upon ourselves.  

When we love ourselves, we recognize the signs our bodies use to communicate that we need to slow down or even stop completely for a while.  It may seem impossible to do this when you have a medically fragile child, but it’s paramount to be tuned in to our inherent needs before they get wildly out of control.  For some of us, managing stress can be as simple as taking five minutes away from everything and sitting in silence.  For others, it involves meditation and still others may take a fifteen minute walk in nature.  No matter the means, the point is that we must prioritize loving our bodies and minds so that they can be renewed and energized to tackle the next catastrophe or stress-inducing frustration.

Take time today to find five, ten, or fifteen minutes to do something that refreshes you, makes you feel alive and awake, and draws renewed strength for you to offer yourself more fully to your loved one.  

Jeannie Ewing is a writer, speaker, and grief recovery coach.  She is the co-author of Navigating Deep Waters: Meditations for Caregivers.  Jeannie was featured on NPR’s Weekend Edition and Tony Agnesi’s radio show Finding God’s Grace.  For more information on her professional services, visit her websites lovealonecreates.com or fromgrief2grace.com.  

Text Copyright 2015 Jeannie Ewing, all rights reserved.

Image Copyright 2013 “Balance” by realworkhard on Pixabay and edited in Canva by Jeannie Ewing.

Summer Reading List: Stephen

The CCA Blog Contributors are creating lists of their top recommendations for a "Summer Reading List." So get your library cards out and pack your beach tote -- we're checking out some of our favorite reads this summer!

Stephen recommends:

The Story of My Life by Helen Keller

I recommend this autobiography because it is so genuine and inspiring...Helen went through such extreme challenges and the emotions the book invokes are very powerful and are very familiar to anyone facing life's challenges including those living with craniofacial issues. 

Charlotte's Web by E. B. White

This book is great because everyone needs a Charlotte the Spider in their life to make it through having craniofacial issues.  I have had many many Charlottes throughout all stages of my life who have supported me emotionally and spiritually.  The book also emphasizes how important it is to develop a sense of community and to help others...we are all in the same boat and need each other to thrive in this world.

 

A New Earth by Eckhart Tolle

Changing the way we think completely changes the quality of our lives.  We can change ourselves (and spend that energy enriching our own lives rather than trying to change everyone on the outside).  I wish I had found this book or had these principles and skills taught to me decades ago.

Thinking about buying the books instead of renting? Order online via iGive.com and CCA will receive a portion of the sales! 

Tips & Tricks for Scars

Today I wanted to share with you some information about post-op scarring.  I tend to heal slowly (from all “owies,” not just surgery) and scar fairly severely (i.e., granulation tissue and keloids). Knowing that, I have been conducting my own experiments in scar mitigation and I am here to report my findings. Fortunately, these tips cross all scar boundaries. I started, of course, treating my post-surgery scars, but I've found that these tips work equally well for skinned knees, vicious bug bites, and even zits!  

SCAR CARE TIPS

1.  As soon as you are cleared by your medical professional to wash your wound or incision, keep it very clean. Never rub or scrub the wound with a rag or loofah, but rather lather just your hands with a mild liquid soap and warm water to "flush" the area. Many times, this flushing is enough cleaning, but if you have gravel, dirt, or sweat in the wound at any time, you can use gentle, circular motions with your fingertips to clean your wound. Be especially careful when scabs start to form -- you want to let them soften and fall off naturally. Do not, I repeat, do not pick off your scabs! Bottom Line: Follow Drs. orders, but keep that sucker clean!
2. Use Neosporin on large wounds for 3-5 days (for smaller wounds, like zits and tiny incisions, 1-2 days will suffice). With clean fingers or a cotton swab, dab a smooth layer of Neosporin over your wound and if all possible, let it absorb into your skin in the open air for 15-20 minutes before covering it with a bandage or putting on clothing.
3. Use Mederma immediately (just after the 3-5 days of Neosporin if you have a large wound). I could seriously write an ode of joy to Mederma praising it for its abilities grow skin cells ... okay, so maybe it’s not actually growing cells, but it works! Mederma is always in my makeup bag and it is a part of my skincare regimen each morning and night. For best results, you need to apply Mederma several times a day, so consider buying two tubes and keep one in your desk or purse and one at home; but at the very least, apply it in the morning and at night. I have also had great results in trying to fade old scars. Old scar therapy takes considerably more time (several months with repeated use), but if you're concerned about scar appearance, then it is worth it.
4. You'll probably hear me talking more in the future about going natural and organic (I am slowly transitioning my food, health, beauty and household products to natural and organic when possible) and if you've already made that lifestyle change, KUDOS to you! So with that concern in mind, for the all-natural types, I recommend this product: The Left Hand Soap Co. Skin Salve. This soothing salve is handmade without any petroleum products in sustainable, craft batches, so it's better for you and the environment. I use TLH salves for maintenance of minor scars after Neosporin and in addition Mederma, but I'm confident you could use it in place of those two products and experience excellent results. It keeps the skin moist, which is the main premise of healing wounds without scarring. 
5. Let the affected area breathe when possible. For some post-op care, you'll have to keep it bandaged, wrapped, or covered, but sans any specific instructions, think breathable fabrics and less is more. You’ll want to keep the skin moist and germs out, but after a few days, Band-Aids seem to keep the wound “mushy,” so I generally only use them for a couple of days. Moisture is still important, even after the wound has dried, so keep a medicated moisturizer on the affected area for several weeks.
6. Massage. A CCA mom gave me a tip prior to my last surgery and recommended cross fiber massage as a post-op treatment. She said her son had benefitted from it and suggested I try it. Wow, was she right! I was skeptical at first, but the healing hands of my massage professional made a real difference in my healing process. In the therapy, we first focused on draining lymph from my face and jawline, which tends to accumulate, causing a puffy, red look and the feeling of warm inflammation in my face. After she drained the lymph, we worked on loosening up the scar tissue for about six months. I experienced very positive results, which I will be sharing in an upcoming blog post about medical massage ... so stay tuned!

Hopefully these tips about scar care will help you fade old scars. But one of the most important things to remember is that scars tell a story. I think scars are intriguing and beautiful. So don’t hide your scars – celebrate the person you are and the struggles you've overcome. And remember, scars are cool. If you don’t believe me, just ask these three!

"It matters not what someone is born, but what they grow to be."
J.K. Rowling, Author, Harry Potter and the Goblet of Fire

"I love it because it makes me a person who has an interesting past, 

and it reminds me that I can survive any pain." 

Padma Lakshmi, Top Chef Host & Model

Padma has a seven inch scar on her arm from a childhood car accident 

and discussed it in the May 2009 issue of Allure.

"I believe that in all forms of art there has to have been some initial adversity: 

that is what makes art, as far as I'm concerned," he said. 

"And it's not something you outlive: once you experience it, it's always with you. 

It forms part of your makeup; probably it's the reason for your makeup."

Seal, Musician and Celebrity

Seal has often discussed the scars that showed up on his face when he was 23,

an effect of discoid lupus erythematosus.

--Erica

Small Steps, Incredible Journey

This week I will run my first official half marathon race.

• Saturday, I put in 13.2 miles and on Sunday, my “Race Husband” followed up my practice run with a foot massage.
• I have carefully washed all my tech shirts and my running tights are hung up to dry.
• I’ve packed my race outfit and I’m almost done with a seriously rad playlist.

All the preparation is complete, but it’s still hard to believe that I am runner.
I started running just about two years ago. There were several reasons I decided to get in shape in 2011, but perhaps one of the first motivators was a surgery I had in December 2010.

Read More

from here

Say Cheese: How I Learned to Love Bad Photos of Myself

One of the hardest things growing up for me was school pictures. Inevitably, I would wake up late on picture day and drop jelly on my shirt at breakfast, or some well-meaning teacher would decide to "smooth" my hair with one of those black plastic combs-- much more suited to Donald Trump's hair than a girl with thick, coarse, wavy locks. I hated sitting on that stool and posing for the photo, but even more so, I dreaded the day the pictures came in. I always begged my teachers to allow me to pass them out so I could snatch mine and that 8x10 clear envelope could be immediately turned over, hidden, and stuffed in my backpack. Being teacher's pet can come in handy, but of course, a couple of times Rusty* or Kyle* was selected to pass out photos and, knowing that it would get under my skin, they would tease me by holding up my picture envelope and making silly comments about the oversized bow in my hair, the growing gap between my teeth or my "fat" chin. Don't get me wrong, these kids were not intentionally trying to bully me, and I was fortunate to grow up in the supportive and caring environment I did.  But, the lifelong dread and anxiety I felt around photography grew based on small experiences like school pictures.

As I got older, I avoided getting in group shots as a teenager. My friends and I, like most teenage girls, just loved dressing up in prom dresses at department stores and taking pictures, or putting on makeup at sleepovers and having fashion shows, and plastering our lockers with scrapbook-worthy photo creations. I hated my photos so much that I would always try to stay out of them or worse, stage a poorly planned "distraction" in the photo. I have tons of pictures where I've "casually" made sure my chin was covered up: playing cards fanned over my face, scarves wrapped up beyond my neck, books in front of my face ... you get the idea. 

Let's all just take a minute to laugh at how ill advised these plans were. 

Haha, I love old photos!

Now, I will attempt to explain how I overcame my photo phobia. 

1. Let Time Pass. If you're a teen reading this, you just have to trust me on this one: nothing can explain how looking back at your younger self erases all flaws. When you see a photo of yourself now, in the present, you always focus on the negatives. Your flaws jump out first. But looking back, I see myself so differently. I see youth, silliness and sweetness and I remember the person that I was at that age. I see awkwardness, too, but it is much more endearing now than embarrassing.
2. Reframe the purpose of the photo. Since time and age don't help you in the present, when you take photos now, try to remember that you're not selling a product, convincing someone to fall in love with you or making your Facebook friends jealous (okay, maybe that last one just a little). You are capturing a memory. When you reframe what a photo is for, you can look it at with less critical eyes. You can understand that you don't need your photos to be perfect; you want them to tell a story and how you look is part of your story. I think this peace with photography came to me around my late high school and college years. Being in clubs and organizations required a lot of posing for group shots and I told myself, "Sure, I don't look perfect, but I want to remember the activities I did! I want a record of my participation!" I want to be able to peek back into "the best years of my life" with some level of reality. I stopped covering my face or insisting on being the one behind the camera. I relaxed. I realized that I may not love how I look in every photo, but I still wanted those memories. And the funny thing is, when I realized a tangible record of a memory was what I was after, the overly critical eye to how I looked in the photos faded.
3. Take a lot of pictures, so you have a lot to choose from. This is pretty simple. When you're taking pictures, take an abundance! I could never figure out why I really liked how I looked in some photos but felt like others were a complete misrepresentation of me. So, I just started taking more of the same shot when I was taking pictures. Sadly, I didn't end up taking pictures more often but I did manage to take more pictures of each "Kodak moment."
4. After you start taking more photos of yourself and actually getting in front of the camera, you learn what angles flatter your features (or minimize your perceived flaws) best. Examine photos that you like of yourself and take note of the way you stand and position your head. I am not a diva, but I do have a "good side" that I actively try to position myself in when someone whips out a camera or phone. I try to be nonchalant and avoid inconveniencing a crowd, but subtle movements, like holding my shoulders back or raising my chin to a certain level, improves my photos and my reaction to them significantly. Also, I'm fortunate to have a husband who is not afraid to say, "Hey, let's switch sides," when posing with friends and family. Tell a family member or a friend about your "good side" and let them remind you to get in position when the paparazzi lights are flashing. A good photo buddy helps you speak up when you feel insecure. The way I see it, it is all about confidence. When you look good in photos, you feel proud and a little smizing never hurts, amirite Tyra fans?
5. Let it go! In the end, you just have to be willing to say, "This is me. I love me." It is a process for sure because every time an unflattering picture of me is tagged on Facebook or (even worse) printed in a professional directory, I cringe a little in the moment. Then, I try to I realize the feeling is just disappointment and then I let it go. I have found that as time goes by, it is just not that important. Most people looking at the photos are probably looking for their picture and the ones that aren't, well, they don't matter. I know that beyond the picture is a person; beyond the face is a heart. A bad picture here and there is a part of life. And if you're able to let the expectations of how you "should" look go, you'll be much happier and less anxious about photography.

I was inspired to write this post after recently being in two weddings. OMG, I am just now recovering from strained smile muscles! When the photos came out, was I happy with all of them? No, of course not. But, I took myself through the steps above and then walked away from the photos. When I returned to them for another look, I saw a much different story. I didn't see umpteen unflattering pictures of myself ... I saw a love story, a wedding, a celebration of friends that I was honored to play a role in. Photo anxiety is real for everyone with insecurities, so what strategies have you developed to cope with the camera?

-- ERICA

*Names changed. 

Dad of the Year...

Please welcome guest blogger Kerry Lynch...

Hi, my name is Kerry Lynch, and my daughter, Mary Catherine was born on 12/08/2011 with Apert Syndrome.  We had no knowledge of this prior to her birth, so were shell shocked when she arrived.  We quickly adjusted to our new life as parents of a "special baby".  Research, doctors appointments, tests, travels, fears, anxiety, support, love, etc!  It sure has been a wild ride, and I'm sure it will continue to be. We are still newbies to the Apert world, but we are incredibly grateful for the support of the CCA family as well as the other families we have met through the CCA.  Mary Cate is scheduled to undergo her first finger/toe release in August, and we will see where the surgery schedule goes from there!  Please feel free to check out our website at www.mymarycate.org to learn more about our little lady.

With Fathers Day quickly approaching, I would like to give a shout out to the father's of our amazing CCA kiddos, and especially to my husband Chris!

I have to admit, I was a bit nervous that Chris was going to have a hard time "growing up" and being a father.  He has always loved adventures: rugby, wrestling, rock climbing, mountain climbing, Go Ruck challenge (if you are wondering what this is...you can google it), etc.  He is the definition of a "guy's guy".  During my pregnancy he spoke pretty openly about how terrified he was to have a daughter, and how he was already looking at youth rugby programs for when our little man arrived.  With the male dominance on the "Lynch" side, I kept telling him not to worry about it...this baby would definitely be a boy!  

Well.........our baby arrived and not only did we get the shock that she was a SHE, but we also got the shocking diagnosis of Apert Syndrome.  Chris was instantly thrown into, not only the role of father to a daughter, but a special daughter at that!

I remember seeing his tears and the fear in his eyes during those first hours and days after her birth, and I worried that my crazy, fun-loving, hilarious, adventurous husband was "gone".  Thankfully that lasted no more than 48 hours, and he was back to his old ways...times ten!  In our 12+ years together, I have never seen this guy smile and laugh as much as he does when he sees or speaks or even thinks of Mary Cate!

In the last six months Chris has blown me away with his amazing fathering skills, and Mary Cate absolutely adores him!  I am so grateful to have married such a fantastic man.  Mary Cate is the luckiest little girl to have him for a father.  (I promise Mary Cate, I will work hard to get my way and have you be an Irish Dancer, but I am pretty sure your dad already has you signed up for rugby in a couple of years!)

I recently got back from a weekend away with my girlfriends, and, not only did Chris do a fabulous job taking care of Mary Cate's every need, he never had to call to ask for help.  He also enjoyed every minute (OK, almost every minute-- maybe not the ones from 2-5 a.m. while she wanted to play).  I got to enjoy myself and not worry too much about how they were doing back home!

I even awoke Sunday morning to this great video!  You better believe that after watching this I couldn't have gotten home quicker to my loves, and, upon getting home, I found at least 5 more of these music videos on the laptop!

YouTube link to view video

Thanks Chris for all you do for your girls...We LOVE you so much, and hope this year is the BEST FATHER'S DAY ever!  xxox

 Please tell us about your awesome CCA Father! 

Appreciating the Simple Things

When Peter was in kindergarten he brought home a paper called “All About Me” where you fill in the blanks of statements like, “My favorite color is...,” “My favorite food is…,” “My favorite holiday is…,” etc. The one thing I will always remember about this form is the statement that read, “If I could do anything I would…” After reading the sentence, I eagerly looked at Peter to see what he would say. Without any hesitation he said, “If I could do anything I would sleep.”

What? Wait, timeout I said, I don’t think you understood the question. Think about if you could travel anywhere in the world, meet a famous person, or have an amazing adventure. No, he replied, I like to sleep. I kept encouraging other options like meet the President, be an astronaut, go to Africa, and so on. There was no changing his mind though. I really like to sleep he insisted.

I’m sure his affinity for sleep was due to the many hospitalizations he endured in his early years and how, consequently, he has always felt safe and comfortable in his own bed. But still, this was his biggest dream at five? I wasn’t exactly sure what to make of that, so I decided better to laugh about it and move on. Perhaps too early to dwell on his ambitions and future I thought-- or rather hoped!

I was reminded of this experience again recently when Peter brought home a similar piece of paper; this time entitled “The Real Me—Today.” The questions were a little different now that he is in fifth grade, but the answers were still interesting and amusing. The last sentence on the page said, “If I could have three wishes I would want…” Oh no, I thought, here we go again. I sure hope sleeping isn't still on the list! Typical of what I have now come to expect from Peter, however, his answers made me both laugh and cry. His three wishes were:

1) to see my cousin Tommy again,

2) to not be different, and

3) to have a mansion.

His first two responses obviously tugged at my heart, especially knowing that I cannot make them come true. The third one though caught me by surprise. Why do you want to have a mansion I asked? Because I want to be rich he said. Well then, I said, you might want to start thinking more about your answer to number nine. This sentence read, “When I finish school I want to…” Peter’s answer was “I don’t know.” I said you will have to find a way to make a lot of money if you want to be rich. He absorbed that thought for about a half second, grabbed his iPod Touch, and was quickly caught up in a stimulating game of “Angry Birds.”

As I watched him walk away I thought, he possesses more wisdom than most of us acquire in a lifetime. What Peter already knew at the age of five, takes most of us our entire lives to learn. It’s really the simple things like our own bed, our health, and spending time with loved ones that matter the most.

On being pregnant again

If you haven't already read the news over on my other site, I am sharing it with you all now...I'm pregnant! It's been a long time coming - both to get my heart around the idea of having another, and to get my body to cooperate once my heart was ready. And now we couldn't be happier.

Okay, well, that isn't really the truth. Let me explain.

I'm extremely nervous this time around. Worried about the pregnancy remaining viable (thanks to previous miscarriages), worried about carrying to full-term (thanks to pre-term labor with both boys) and worried about the gazillion things that could potentially go wrong - birth defects, syndromes, health issues for both me and the baby. Obviously the last one is a result of having a child with Apert Syndrome and having been slapped in the face with that diagnosis at the minute we were supposed to be celebrating a perfectly healthy baby boy being brought into the world.

Not only did it rob us of the joyful experience and happy memories usually associated with a child's birth, it has also left behind shards of glass so deep in our heart that they will be felt in all aspects of our life for years to come. And it is now, during this pregnancy, that we carefully tiptoe through each day trying not to let the shards cut our hearts any deeper.

When I got pregnant with my first, Ethan (who turns 5 in March), it happened quickly, I enjoyed being pregnant and I was blissfully unaware just how much had to go right to have a perfectly healthy baby. I had the normal discomforts towards the end and did experience pre-term labor, but the end result was exactly what every new mom expects - a healthy, thriving child.

Ethan was 3 months old when I got pregnant with Aiden (who will turn 4 in February). I had a very similar pregnancy the second time around except that he came prematurely at 34.5 weeks. And then, of course, that is where the similarities abruptly halt and our lives were changed by Apert Syndrome.

We have spent almost 4 years removing the large chunks of glass that threatened to tear our hearts apart forever. But those shards, they are too small, too embedded to extract. I am trying not to let the past affect the future. It is just so hard.

My heart remains in tact despite the shards inside. Just having Aiden in my life - his smile, his strength, his full-of-life personality - has patched up the gaping holes and helped me to move on. My fears no longer reside in the challenges he will continue to face. They lie, however, in not knowing what other blows might come in the future that may damage my heart beyond repair.

To get through, I tell myself everyday that lightening very rarely strikes twice and that stress is not good for mom or baby. I am taking each day as it comes. I hope to enjoy this pregnancy as much as possible without letting the fear of what I can't control inhibit this experience.

Life & Loss

Tragedy struck our family last weekend when our 14-year old nephew unexpectedly passed away. It is the worst fear that all of us have as parents. There is no greater loss.

Tommy had autism, and, like many of our own kids, was often referred to as “special.” Although that word is the socially acceptable term for describing kids with various handicaps, I have never liked it and seldom use it. Kids like Tommy and my son, Peter, are indeed special, but I don’t feel that my other son and nieces/nephews are any less special. I would be equally devastated to lose any of them. Rather than special, I like to think of children like Peter and Tommy as difference makers. They leave an intense lasting impression, they deeply change the people who love and care for them, and they possess insight that is much wiser than their age.

Of the many amazing stories that were shared about Tommy this week, there is one that personally resonated with me. Tommy’s Grandpa would often take him out for breakfast at McDonald’s. They would always order exactly the same thing, although at various locations since they live in different states. On one visit, the cashier entered their order before they got up to the counter. Tommy’s Grandpa said, “We were here six months ago, and you still remember?” Of course she remembered. This did not surprise me.

I often have the same experience with Peter. People may first notice his facial difference, but they usually walk away remembering his sharp humor, his thoughtfulness, or his insightful remarks. This may be a result of his challenging life experiences, but I think there is more to it. I see compassion and enlightenment that comes from a place deep within. It’s the essence of who Peter is and how he lives his life. It is the soul of someone truly touched by a higher power. As his parent, I am fortunate to see this gift in action all the time. This week, for example, Peter removed his prosthetic ear and told me that he didn’t want to wear it for the funeral. He said, “I think Cousin Tommy would want me to be just who I am.” What a profound statement from someone so young. I was speechless.

I hate that Peter has to have so many surgeries, I hate that he has to endure stares in public, and I sometimes even hate how his needs have complicated my own life. We sometimes talk about how unfair all these things are, and how Peter wishes he wasn’t born with Goldenhar Syndrome. The overwhelming positive outcome from all his issues, though, is the far reaching influence he has had on so many lives. Families like ours, who face so many emotional and scary challenges with our children, have a different appreciation of life. Although we all cope individually, we are connected on a very deep level. I don’t believe that connection and relationship ever ends, even when the worst happens and we have to look toward a different future. Anyone who interacted with Tommy, even that cashier at McDonald’s, was changed for the better.

“Be the change you want to see in the world.” Mahatma Gandhi

My Story

This week marks the one year anniversary of my 40th birthday (wink, wink). I feel GREAT, more like my old self and less like the stranger that possessed my body and mind for the last decade. What happened you ask? It’s a long story, but I’ll try to give you the brief version starting with my 30th birthday.

That was the day I had an amniocentesis done after just finding out that “there is something wrong with the baby.” Then there was Peter’s complicated, traumatic, and two-month early birth that had me scared out of my wits. That was followed by his over three-month stay in NICU, which really was a cake walk compared to taking care of him at home his first year. There was also the constant fight with our state Medicaid as well as the management of Peter’s numerous clinic appointments and piles of paperwork. It was a very lonely time for me even though we had a constant stream of strangers (therapists, nurses, and social workers) in and out of our house. In the midst of surviving Peter’s first year, I was dealt another blow by the sudden and tragic death of my brother. I also had two very early miscarriages during that time—one at his funeral.

How can all this be happening to me I thought? How much can a person take? What ensued was a very long bout of guilt, grief, and depression. I rarely left the house, was in a constant state of fear with the responsibility of Peter’s care, and sometimes never even showered or dressed for the day. It’s really something that I can’t even describe.

I did gradually claw out of the darkness. I had to for Peter’s sake. We had big decisions to make about surgeries and specialists. Those 2-3 years flew by in a blur of accomplishing what had to be done for Peter. Then, just as I was thinking life was calming down a little, SURPRISE again! I was pregnant. At the earliest opportunity, I had a high-level ultrasound. Once that came back normal, I did get excited about welcoming another baby. Also, Peter had his trach removed about a week before Jacob was born. We had a MAJOR celebration over that milestone!!! Things were definitely looking up.

Jacob’s birth, when I was 34, was a great joy. For me, it was very healing compared to the trauma of Peter’s arrival. I (stupidly) thought taking care of this baby would be easy compared to what we went through with Peter. Boy was I wrong! It turns out that all babies are exhausting—even the so called “normal” ones. Who knew?! Jacob never slept more than a few hours at a time and was very colicky. Poor Peter endured countless hours of hearing his new brother scream his head off and take all the attention away from him.

I do recall good times and laughs during all those years, but they were definitely overshadowed with a lot of responsibility. I still remember the words of the geneticist who diagnosed Peter. He said, “This is not doom and gloom. But, this is a very rough road.” Life is challenging and messy. We aren’t given the luxury to choose our trials, but we do have the choice to grow and learn from those events.

I’ve never shared my full story, but I’m hoping that it gives support to other Mom’s like me. Nobody would ever choose to have their child go through as much pain as ours do. It is not your fault. Let me repeat that again, IT IS NOT YOUR FAULT that this happened. You will survive the many challenges of motherhood, and, eventually, you will emerge a wiser and more compassionate person. I hate to tempt fate too much, but I say bring it on world! I think us “special” Moms can handle just about anything—wrinkles and all.

Why Me?

After Peter’s birth, I began writing daily updates about his progress, the staff, our concerns, and his many visitors. It was started as a way to get information out to friends and family who wanted to stay informed. Basically it was a “blog” before blogs were even created. I kept up with “Pete’s Diary” during his entire 3 ½ month stay in NICU and also periodically after his discharge.

Fast forward ten years, and Peter is now reading the diary himself. He has been getting it out almost every day this summer and asks questions about things that I wrote. I love that he has it to read and that he is especially interested in understanding more about his complicated first months of life. For me, however, it’s difficult to revisit that time. I literally closed that book a long time ago, but how can I possibly explain that to him?

In an effort to help Peter (and myself), I have decided to read through the journal with him so that we can discuss it. Although he remains a happy and typical ten-year old boy on the surface, I see that he is not as lighthearted anymore. He possesses a deep sadness that I can’t possibly understand. Earlier this week Peter was crying, and he told me that he wished he could talk to God and ask why he was born with a craniofacial condition. My reply to him was that I wished he could too because I would also like the answer to that question. I told him how proud his Dad and I are of him and that we love him deeply and would trade places with him if we could. I also told him that although he has been given a lot to deal with in life, there are always people who have more. In our many visits to the hospital, we have seen kids with cancer, kids in wheelchairs, kids who are badly burned, and kids who are mentally impaired. I don’t fault Peter for the way he is feeling, and I will always be supportive and comforting when he needs a shoulder to cry on. I don’t, however, want him to drown in a puddle of self pity.

I’ve heard the many sayings that are repeated over and over to parents like me… “Everything happens for a reason,” “God doesn’t give you more than you can handle,” and “God gives special children to special parents.” I abandoned those beliefs long ago. If that is what gives you strength, I am not one to argue about it. As for me, the following has stuck with me through the years and helped me cope…

“Can you accept the idea that some things happen for no reason?

That there is randomness in the universe?”

This was written by Harold S. Kushner who is a Rabbi and was a parent of a child who died from a complicated disease. He is also the author of many books, including one entitled “When Bad Things Happen to Good People.” I’m sure Kushner’s quote is one that I will someday share and discuss with Peter. I know that eventually though, Peter will have to form his own opinion of why life dealt him such a difficult hand. As his Mom, I really look forward to the day he enlightens me with it.

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!