Healing Stories

If God leads you to the edge of the cliff, trust Him fully and let go, only 1 of 2 things will happen, either He'll catch you when you fall, or He'll teach you how to fly.


First thing this morning as I was browsing my Facebook news feed, I saw the statement above posted by a friend in Memphis.  I have no idea if it is her own words or a quote from someone.  But it smacked me right in the face.  That simple statement is so very true.  It screamed at me to have faith in God and things will be ok.  Maybe not exactly the ok that I am looking for, but the ok that God has planned for me.


It has been just over a year now that we found out about Laik's trisomy.  And still I have difficult days.  I'm certain, and have been told, that there will be many more.  I have read several books that have given me great hope for peace with our journey.
Each have been different, but each have been enlightening.  My "book club" friends haven't bought in to reading the books I am sharing, but all those women are in a different place than I am.  That is something I have realized, once I became the parent of a child with special needs, I too, became a bit different.  It is obvious, my current reading list, is very different now. Although different, I do want to share with my readers what books I have had my nose in lately. Who knows, someone may want to read some of them?!!?!

• Shut Up About Your Perfect Kid:  A Survival Guide for Ordinary Parents of Special Children"  by Gina Gallagher and Patricia Konjoian

This book was an impulse buy...I needed something to read and I googled "parenting special needs children" on my phone in the local Books A Million and this book was the first one to pop up!  I found it in the store and thumbed through it and decided on the spot to buy it.  Plus, I really liked the title!  The co-authors are sisters, that are hilarious.  This book is written directly from the heart.  There is no sugar coating the situation, one has a child with Bipolar Disorder and the other has a child with Autism.  At the time I was reading, Laik was about 4 months old, it opened my eyes to what "could" happen in my own future.  For example, they talked about people staring, making "you should" comments, and feeling ostracized because their kids had issues.  But what I loved the most about this book....they are surviving, their kids are thriving, and life goes on no matter what your circumstances.  It was a good read and it lifted my down beaten spirits.  And by the way, everyone thinks that their kid is perfect, right?!?!?!?  

• Without a Word by Jill Kelly

This book was purchased the day of a local fund raising event for the Chattanooga Area Fellowship of Christian Athletes.  Jill Kelly is the wife of Jim Kelly, former Buffalo Bills quarterback.  I had seen the book in the bookstore many times, the front cover is one that grabs your heartstrings.  It is a picture of the entire Kelly family decked out in Buffalo Bills jerseys for the celebration of Jim being inducted into the Hall of Fame.  I would pick the book up, look through it and then put it back.  All the while thinking to myself, "that is a pretty serious condition, nothing like what Laik has."  But on a afternoon drive home from work, I saw a billboard announcing that Jim and Jill Kelly would be the keynote speaker at the event.  I decided right then to go get the book and read it.  Then, at the event, I was fortunate enough to speak with Jill. As soon as I started talking my voice quivered and my eyes filled with tears.  I remember Jill gently taking my hand and saying to me, "say no more, I know how you feel."  I was hooked and knew, I had to read that book immediately.  Their son, Hunter, had Krabbe Disease.  The story is remarkable in itself, but ultimately through their son's illness, Jill and Jim were led to Christ!  A great read and very touching story.  Most of all for me, it proved that "conditions" have no discrimination...."it" can happen to anyone.....I mean she is married to a SUPER BOWL CHAMPION!

• Road Map to Holland:  How I Found My Way Through My Son's First Two Years with Down Syndrome by Jennifer Graf Groneberg

If you have been reading my blog for very long, you have read "Tulips" and read the short story Welcome to Holland by Emily Perl Kingsley.  In this book, Groneberg gives her spin of her own trip to Holland.  What makes the story even more interesting to read is the fact that her son is a twin.  From this book, I learned to not compare Laik to other children.  This is difficult to be able to do but the author sheds light on how to handle being the parent of a special needs child.  She shares her experiences of how she told her husband, what they told to friends, how she handled being a parent of a Downs child, and how she came to accept what her new future holds.  I related to her story very much.  As I was reading, I found that I felt many of the exact same feelings she had felt.  That was refreshing because I had felt that I was the only person having thoughts and feelings that I did not want to share with anyone!  And remember, Holland isn't so bad after all!  It's not Italy, but it has a beauty all of its own!

• Extraordinary Kids:  Nurturing and Championing Your Child with Special Needs by Cheri Fuller and Louise Tucker Jones

This book is the oldest of my "new special" library.  A gift from a woman I have never even met!  I have just started the book and I am thoroughly enjoying it already!  And I know exactly why....it is as if the authors and stories are speaking to me and telling me, "God Will get you through this!"  The stories shared in the book are from real mothers that are living day to day with children that are special, non-typical and dependent!  All those descriptions are just ugly adjectives in my opinion, but it is what it is.  Parents that are spiritually, emotionally and physically driven to be the best advocate for their child!  This book, although I'm in just the fourth chapter, is encouraging me to know more about Laik's condition, how to cope with the challenges we will face, and to always fight for the best care and education for my child!  I would recommend it to anyone!  And even if you do not have a extraordinary child, it could be a great read for an ordinary parent.

My nose has been deep into my Bible as well.  God, my family and my close friends remain to keep me strong in this battle.  Our journey is going to be life long and I am prepared to fight and I am thankful for those that have battled before me and chosen to share through the pages of books.  

On my morning walk today I broke down into tears in front of a friend and shared my fears.  Her words were, "I can't imagine what you are going through, but I DO know that we are so thankful we have Laik."  And she is so very right, I am thankful for him and I want to share my story so that it may help another!

It's also nice to know....I'm not at the edge of the cliff alone!  

Swim Time!

Nothing like a Saturday in the pool at Mimi and Pop's!!!!  Laik loves the water and his sunglasses!   He does remarkably well staying in the water and enjoying it. 
Summer camp is over which means Laik and Mommy will be in the pool daily until school starts!
Happy Summer!

If I could figure out "how to"  I would rotate this uploaded photo from my phone!!!!!

Maybe next time...

Today was "Swallow Study #3" for Laik.  What is a swallow study exactly?  Well, you know me and my medical terminology are by no means perfect, but here goes, I'll give it my best.  The patient must drink or eat liquids that include barium sulfate.  The swallowing of the barium shows up on xray (which you can see to the right of Laik's head in the photo) to show abnormalities with swallowing.  It is a simple procedure and Laik doesn't seemed to be bothered by the process.

The bummer about the test is milk/food must be withheld for 3-4 hours prior to the procedure.  This is the most unpleasant part of the deal.  But due to his age, they want him to be hungry at the time of testing.

Our first swallow study was August 10, 2010.  Laik was just a few days past six weeks old.  I had taken him to our pediatrician the week before because he seemed to be getting chugged up at every feeding.  And he had this gurgle in his throat that seemed to never go away.  It was this annoying sound that worried me!  So, here we go....to Children's for our study.

Laik is dressed in his fancy mint green hospital issued gown that ties in the back and I get to don a 25 pound lead apron. I stand in front of him and give him the bottle with "thin" liquid.  The speech therapist, after just a few sucks on the bottle, instructs me to stop.  Then she gives me a bottle with "nectar" liquid and again, instructs me to stop.  And finally a bottle with "honey" liquid.  And yet again, instructs me to stop.  She then proceeds to tell me that Laik is aspirating when he swallows with thin and nectar consistency liquids.  He did the best with "honey" consistency, which she had concerns about it as well.

To sum it up for the first visit, she informs me that since I am feeding Laik breast milk it must be thickened with a product called "simply thick" and in Chattanooga it can be purchased at one pharmacy or online. Oh and it isn't cheap!  I then ask her, what if this doesn't help?  So to the dark side we go....her reply:  He will have to have another swallow study and then maybe a feeding tube if he isn't successful with thickening his milk.  AGHHHHHH! (Unfortunately, some 12p children have to have feeding tubes.)

Not so dark after all, feeding Laik once we had thickened his milk was much more pleasant.  I was able to relax.  But then we had NIPPLE drama....finding just the right nipple for him was like finding the perfect dress for a wedding...near impossible, but then wha-la....AVENT wins!  So the Honey thickness fun began!

Laik had his second study in February 2011.  Improvement.....NECTAR consistency and baby food approval.  I will admit, I cheated for about 2 months prior to that test and thinned his milk and started baby food.  He loved baby food and had no aversions.  Yeah!  So, it has been smooth sailing with milk and food since then.  But no solid solids...yet.   Which led to our most recent study on July 13, 2011.

Study #3....I won't lie....I was hoping for success with NO thickening!  But really I wanted to know about foods.  Laik just does not handle solids well at all, it is GAG O RAMA!  And I'm sure it doesn't help that he still doesn't have any teeth.  (I really think we are on the verge of some teeth erupting....the drooling is increasing daily!)

The feeding specialist informed me that Laik just doesn't really know what to do with solids once they get on the back of his tongue.  His "sucking" tongue action is great..up and down and up and down.  But chewing requires side to side action from the tongue.  Sadly, our boy just doesn't have it.  Sooooooo, now we are adding to our physician/specialist/therapist line-up with an evaluation with a feeding specialist.  I'll keep you posted on how that goes!

As for now, we are happy that Laik feeds well, even if it does have to be thickened.  But as long as Ella's Kitchen Brand keeps making tasty baby foods and I can mash up some of our table foods, Laik's palate is going to be treated!

This food thing is an adventure!  We will work on it and hopefully, the next time, thin it will be! Oh, and chewing too!