Wednesday, April 4, 2012

In My Shoes Post for Crayon Freckles

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Happy Hump Day! 

I was all excited to share with you my latest project, but after editing, writing and adding pics, my computer decided to shut down and the post was lost!  So until I can get another free hour in my day I figured I'd share a post I did WAY back for my bestie blogging buddy over at Crayon Freckles.  I  can't believe I haven't shared it with you before today, so grab a cup of coffee and get to know me better!

I am Kim.  I blog over at Tiaras and Bowties.  I am honored to have been asked to participate in this wonderful series about Moms. Yes, honored, and truth be told... a bit apprehensive about the whole thing.  It has taken me forever to write this post for Andie.  It can be a bit frightening to open up and keep it real in blogland. You know, to actually tell the tale behind the glitter and glue sticks.

Life in My shoes is much like all of yours after all... but with a twist! 
I am a painter and a crafter but I am also a wife and a Mommy to 2 amazing children, Alexis {15} and Austin {10}.  While I consider both of my kids special, it is Alexis who is medically complex with special needs.  Alexis' main concern is a rare syndrome called Albright's Hereditary Osteodystophy.  She is also Mentally Handicapped with a few physical challenges as well. 

Albright's is an endocrine disorder that is very complex, affecting almost all of her body's organs and systems.  We as a family faced many difficult challeges following her birth.  Alexis was born full term via an emergency C-section seemingly healthy although a bit small. Within her first 12 hours of life she was transferred to the Neonatal ICU as quite the sickly baby; her heart rate would slow to 20 beats per minute, she would stop breathing and turn purple. Teams of Doctors and Specialists would scrutinize every inch of her from the shape of her face and ear lobes, to her shortened forearms.  We were offered many "diagnosis" from the geneticists only to be told hours later that they were wrong. The only thing we knew for sure was that something was indeed very wrong with this precious baby of ours.  Alexis stayed at our local Children's Hospital as an inpatient for 3 months, almost dying 3 times before she was 9 weeks old.  Alexis received a Trach at that time and we were finally able to bring our precious bundle back home where she belonged.  It took geneticists a year to finally give a name to the syndrome that plagued her causing her to become very sick again on her 1st birthday.  Her trach was finally removed around her 2nd birthday.

Austin came along 5 years later.  I had many mixed emotions about my second pregnancy even though we were reassured the odds of any of it happening again were little to none. By the grace of God, Austin was born perfectly & beautifully healthy. 

Life in my shoes often is full of great joy.  Our struggles have only tightened our family's bond.  To be given God's greatest gift in the form a tiny baby is amazing, but to almost lose that gift makes you cherish it even more.  It's as if your heart is ripped from your chest and every emotion fathomable to mankind consumes you.   Great sorrow can lead to great Joy, we are proof of that!  God's Grace is amazing that way... your heart is then made whole; able to experience love unconditionally.

Hey, it's not all a bowl of cherries either!  Most days you would laugh at me. Often walking in circles forgetting what I was about to do.  Medications abound here as Alexis requires upwards of 30 pills a day to remain healthy.  We spend alot of time at the doctors for different things.  Alexis has had quite a few surgeries along the way.  I am quite forgetful.  I get angy and often a bit sad.   I deal with lots of "Mommy Guilt" on a daily basis trying to divy up my time with each child in different ways, wondering most days as I lay my head on my pillow if I have managed to do enough.  Oh, and I think I may have forgotten to mention that I have a live in mother in law with Alzhiemers which, as you might imagine, makes our crazy life just a bit... more interesting!

I manage (most days) to keep a clean house, shower, and maintain a good relationship with my hubbie.  Some days I'm even able to whip up a cute craft to share on the blog.  As the kids continue to grow and Alexis' health for the most part is stable,  I am rediscovering myself and the next chapter in  my crazy twisty turn filled fairy tale life.  I'd be happy to share more with you, but I've already rambled on an on. So, I invite you to follow along if you'd like!

Thanks again for joining me here today to share a glimpse of life in my shoes! 


Chris said...

You are truly an angel among the living. God bless you and your family.


video chat said...

Since shoe fit affects foot function, the marriage between foot and shoe needs to be a harmonious one. People with foot problems are very often people with shoe problems. Shoes should allow the foot to do its job while still protecting it from the forces of walking 10,000+ steps you take a day. During this daily venture your feet will take on many tasks.

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Anonymous said...

This a beautiful tribute to your daughter. I totally understand, as I have a daughter with special needs also. Sarah spent one month in the hospital after being born 7 weeks early, weighing 3 pounds 6 oz. She is moderately MR and has a seizure disorder. But she is the joy of my life. I get angry some days too but I believe that someday my family will be perfect and I will have answers to my many questions: why, why her, why me? By then, it won't matter and matters less every day now. Thank you for being so open and honest and sharing your blessings.

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