Saturday, January 29, 2011

Purpose

I debated whether it was time to write a blog on this topic, but tonight I feel led.  I was unsure if I wanted to share specific details because I didn't want it to become a controversial topic or an issue that we where "held" too.  Sounds strange I know! 

Ok...here it goes!

We all have a purpose in life...some of us may know what it is and some of us may not.  I've prayed for quite some time that God would show me my purpose...my "calling" in life. 

Over the past few years, I have been challenged in many ways.  At times it has felt as if I couldn't handle the challenge in front of me.  I've hit bottom only to find myself lifted back up by encounters, friendships, and words of affirmation.  One day in particular stands out for me.  While this may sound small to some, it was HUGE for me.  It happened after Landon's speech therapy session a few months ago; the session wasn't great.  Landon was tired, frustrated, and wanted no part of "using his words".  I felt defeated in that moment.  As we were walking out, a lady walked in who I only had seen once before.  She smiled at me and said, "You are an awesome mom!"  It was as if God saw my heart in that very moment and He was saying, "Everything is ok...hang in there...I'm right beside you."  That mom made a day of despair beautiful and bright! 

My journey into the world of Apraixa started when Landon was two and I found an amazing book called "The Late Talker".  It was a book that gave me answers into Landon's difficulties even though his doctors seemed to brush off his delays.  A mother's intuition is never wrong...it's an amazing God given gift!  I've learned to trust it and use it. I knew from that moment that I had to be my son's best advocate; no one else could fight for him like I could.  So that's what I did.  I found every book, blog, and website I could on Apraixa.  I was obsessed.  I wanted answers, explanations, but most of all hope.

After we moved to DC, six months went by where Landon didn't receive any therapy or services. Insurance issues mixed with relocating made for a messy situation.  The sad part was that Landon was just a number, his case was among thousands and a 2 1/2 year old boy was not priority in their eyes. 
Enter titan mom! 

I have found that there is no place for laziness in this business.  If you don't stay on top of your needs, and I mean the tippity TOP you won't succeed.  This mentality has led us to some of the BEST therapists and doctors DC has to offer.  They are ALL amazing and gifted!  Through networking and God's amazing plan, Landon has been blessed with Karolynn (speech therapist), Myrna (occupational therapist), Dr. Civetello (neurologist), and last but not least Dr. Mary Megson (developmental pediatrician).  

Dr. Megson's philosophy, which may sound foreign to some, is based on healing the body from within.  Our journey with her began last Wednesday with a trip to Richmond, VA.  Through countless hours of  research, I continued to come across her name as someone who was willing to look deeper into the challenges children like Landon face.  I didn't want someone who brushed us off like the doctors before her. It wasn't uncommon to hear, "keep doing what your doing", "he's a boy...things come later".  I wanted someone to say, "yes, here are the issues and here's how we can help fix it."  Sounds simple but this path has opened my eyes to a lot, including the medical community. 


 For so long, we were told to use a laxative called Miralax to remedy his GI issues, but that just didn't seem right to me.  I wanted to know WHY he was having these issues!  I wanted to stop seeing him on all fours in pain from constipation.  His daily life is challenged with the inability to communicate along side many other subconditions such as seizures, irritability, sleepless nights, and motor planning difficulties. 


The seizures which started 6 months ago, have been controlled by a medication called Keppra. Keppra has a street name of "rage-eppra". The name speaks volumes. It causes mood swings, constipation, and among other things fatigue. Recently, we have noticed some questionable incidents where Landon will abruptly drop his head. We have an upcoming 36 hour video EEG which will give us more answers but as of now they look like head drop seizures. I can't put it into words what it is like to see my son go through this insanity...I feel absolutely helpless!

Dr. Megson gave us insight like no other. She explained the science behind Apraxia and how so many things from our environment (pollutants, vaccination overload, etc) have given us the epidemic that is plaguing our kiddos. The rate of ADHD, autism, and communication disorders is rising more rapidly then ever before. After she spent 2 hours with us, we walked away with hope. Landon is on a special diet that eliminates wheat and dairy along with countless supplements to help with digestive issues, regulation, and overall health. As we made a 2 hour trip home to DC, Jared and I took on this new challenge with excitement and optimism. Yes, the diet and supplements will be a pain at times but so worth the opportunity to have my son back to where he needs to be. 


Fast forward to purpose...


I have been given an opportunity to mother a child with special needs...it is a continuous journey that has taught me more than I could ever imagine. How to love deeper...how to have faith no matter what the circumstance...how to be still regardless of the storm that faces me. My love for him has brought me to a place that I am grateful for...he has changed my life and I know he has and will impact so many others. I have prayed that God would show me what I can do...how I can use this gift for others. I truly feel that I need to be helping others in similar challenges and give them that shoulder and hope that I longed for in the beginning of our journey. At church last Sunday, I met an amazing mother of four who has a little precious boy with special needs. He is beautiful! I felt that "push" to introduce myself and I can't explain how exciting it is to be able to befriend her and share everything I can with her as she enters into her own journey.  


I'm not sure where and what the road ahead looks like but what I do know is that God has me in this place for a great purpose. He has plans for Landon and His plans are always perfect! 



This is not where we planned to be 
When we started this journey 
But this is where we are 
And our God is in control 

Though this first taste is bitter 
There will be sweetness forever 
When we finally taste and see 
That our God is in control 


~ Steven Curtis Chapman

10 comments:

Erin said...

Making me cry! Landon is a such a blessed boy to have you. So, so, amazingly blessed!

Kimberly said...

Sam, you are truly one of the the best mothers I have ever encountered. Landon couldn't have entered into a better family to get all the help and guidance he needs. Your outlook is inspirational and I am excited to be able to "follow along" with your journey. It sounds like this new doctor has a really great outlook that could lead to some big changes in your precious little man. You'll be in my prayers. May you have continued optimism, strength and courage to be a fighter for Landon.

Megs said...

Landon has grown leaps and bounds over the past year Sam- I know such a large part of that was because of you and Jared....
continue to hang in there, and continue to FIGHT!:)

Rebecca said...

Landon is one blessed little guy to have such an awesome mom who fights for him. We will be praying for him in our house. "For I know the plans I have for you!" Thanks for sharing!

Mommie said...

This is why Landon choose you to be his Mom-because you will fight for him now and always My head spins trying to understand all the info you have sifted thru the past 2-3yrs, Your heart fights for the underdog and you don't take no for an answer-maybe you have found your calling. I see you as an advocate for children-to help parents find the right resources and to steer them in the right direction. I am so proud of you!

ZOOMER said...

Sam/Jared: I worked for a District that cares for Special children and have seen families have so much challange and just stand up to what was ahead of them. Not all is easy but what strong people they have to be and that is what you and Jared are!!!! Please know that all your family here are with you in prayers (which works we know) and that if there is anything TOM and I can do to help you, PLEASE let us know...you guys know how much we think of all you
kisses and hugs!!!!!!!

Alice said...

acismsoWhat wonderful parents you are to such a beautiful boy. You have gone through much research for your little man. We know the good Lord is listening to your prayers and he is giving you the will to continue on. Please know that you are all in out thoughts & prayers. LUV TO YOU ALL----AUNT ALICE & UNCLE JERRY

Beth said...

Sweet Sam...just catching up on your blog. You are such a beautiful definition of the word mom. I am so inspired by you and thankful for the chance to have had you in my life during my first year of figuring out this whole mom thing. What a wonderful example you were to me...and I can only imagine that everyone who has the opportunity to know you feels the same way. I'm sure the woman from the Dr's office felt that even in your passing moments. Your determination and fight for Landon is something I admire so much. I commend you for all you've done and will continue to do to walk beside him and advocate for him through this journey. You are amazing my friend. Love you!

The Vraciu Family said...

Sam:

Sharon here (Ryan's apraxia blog mom) - just checked out your blog after I responded to your email. I love this post. You so eloquently say what is in my heart as a mom with an apraxic/special needs child. I am glad you reached out. And am glad to be connected to yet another strong mother/advocate/woman/fighter.

Hang in there - you are on the right path with your precious Landon.

alanwilliams said...

Wow Sam, This is an amazing story. Scratch that you are an amazing story. Your sister Meaghan sent me your blog information a while back and I came accross the email she sent me so I decided to check it out. After reading your story it brought me to tears. It sounds like you have an amazing son and he is blessed to have you in his life as you are blessed to have him. I really want to wish you and your family well. I pray that God walks with you daily on this journey you are on. And I pray that he brings you comfort and strength to continue doing what you have been doing for your son. I would like to check in here every now and then and hope to read more on things you learn. May God bless you and your family.

Your Old Friend
Alan Williams