Friday, May 21, 2010

Our life...Anything but typical

We sure are on an interesting ride.  Our life has been crazy the past couple of months but a really good kind of crazy.  I never thought my life could or would look like it does right now, and it all started with a little boy who has made our life anything but “typical”.

I thank and praise God for the opportunities we have been given to help others and to make more out of a situation that seemed so horrible when we were first put into it.

A couple weeks ago, Nathan and I got the chance to go to Washington, D.C. to testify and give our story before the FDA Advisory Committee.  We went to tell the story of when Zach had Infantile Spasms and we used the drug Acthar Gel and it worked for him. 

We had a great time while we were there for a whole 27 hours.  The night we got there we got a chance to go see my cousins who have lived there for a few years. We went out do dinner, visited and had a great time. 

The next morning we got up and went to the meeting.  The most interesting part was I actually understood most of what was being said by smart physicians. After going through something like this with your child you know things you never thought you were smart enough to learn. 

Monday, May 17, 2010

A SPECIAL MOTHER - By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect -she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it! I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."

Sunday, May 9, 2010

My Mothers Day

Dear mama,

I asked dada to write a poem for you about how I feel, well at least how daddy sees how I feel, about you, my mama. Happy Mother’s Day!! Love, Zachary

I love the way you dress me up
I love the way you massage my butt

I love that you let me eat
Tasty Pop Tarts, my favorite treat

I love you in the morning time,
I love you when the sun don’t shine.

You, mom, are my place real safe
You help me put my toys in place.

Though I cringe when you comb my hair,
I love that you do truly care.

Even when I cannot explain
You wipe my tears without complain.

You help me work to learn to walk
You help me work to learn to talk.

You sit me down and read me books
You laugh at me when I give you “looks”.

Your love for me is beyond compare
Do other kids’ moms have your flair?

I love the way you teach me the world,
I love it when your hair is curled.

I love to play with your hair so long,
It helps my fingers become so strong.

I love it when you hold me tight
I’m sorry that I sometimes bite.

I love it when songs you sing
I love it when you push my swing.

I love you mama, yes it’s true
Happy Mother’s Day to you! 
You, Renee, are a true exceptional mother. From the very beginning, you have taken to your roll as mom quicker and better than I’ve seen others. Even though you’ve admitted to me that the first few months were hard bonding times, you latched on nonetheless and took care of your baby boy for every need or want he had.
It’s been three years since I first witnessed the mother in you blossom. You are absolutely incredible. It brings tears to my eyes and a bright smile on my face to see you love on our Zachary.

The way you communicate with him and know exactly what he’s saying or what he wants. The way you play with him and tickle his belly. The way you explain to him what’s going on for the day, in the world, the workings of everyday life (even when you thought it would be impossible for you to do so). The way you let go and let him be a kid even when part of you is saying to do therapy every day all day.

You are the reason Zachary will be so well adjusted and functioning in life. You get him dressed with sweet song and kisses of love. You get him ready for school and ready for therapy. You take care of Zachary beyond measure.

I love seeing you interact with him and know, you just know, his favorite things to eat/do/play/watch, even though he has a difficult time communicating directly with us. Your compassion for him is so incredible, every mom in the world should use it as an example. You are his comfort; his source of security; the warm, soft, open arms he can always go to. With his gentle repetition of “ma-ma”, everyone knows he needs you; needs to know you’re nearby.

You continue to amaze me each and every day as you grow, blossoming more and more, as a mother. It is an honor to me that you are the mother of our child, our exceptional child. You are the positive force of light when things are tough. I appreciate all you do, and know Zachary does wholeheartedly as well.

On this Mother’s Day, we both wish you the best, desire you to know how much we care, love, appreciate, thank you, need, and are blessed to have you in our lives!   

Happy Mother’s Day to the best Ma-Ma in the whole wide world!

Sunday, May 2, 2010

Feeling Blessed

I feel so blessed to get to be a part of I don’t know how to express my gratitude to all of those involved so that they can truly understand how I feel.

Thank you Nathan
for your amazing commitment to our family and willingness to work tirelessly to allow Zach to have his best life possible.
Susan for your amazing vision, hard work, persistence and always wanting the best for our family along with yours.
Warm Springs Productions for seeing potential in an idea we hope will help so many others. Your willingness to provide your amazing talent and resources.
Bridgeworks Creative for also seeing potential in an idea.  For your long hours and hard work to allow what we are doing to reach so many.
Exceptional Parent Magazine for being a strong support system in unknown territory.
Exceptional Families for your willingness to participate and tell your story to people you had not even met.  Your kindness and friendships mean more than you know.
Exceptional Kiddos you really are the inspiration for all of this, without your strength and determination we wouldn’t be here.  As your parents we will never be able to teach you all that you have taught us.

We just spent 9 days in Tennessee for production on episodes for, and it was a week of new friends, memories and opportunities.  

In such a short time I have had the opportunity to meet people who I now consider to be friends.  Even though we will not get to see each other often, I believe our friendships will continue to grow over time and cyberspace.  I hope and pray we are building a support system that will just continue to grow so no parent or caregiver will feel alone in this journey; so no family member or friend will have to wonder, “how can I be there for the ones I care about so much?”

I thank God every day that Zachary and I are able to travel with Nathan and the production team so that we can meet each and every one of the exceptional families.  It really is amazing the way things always work out the way they are supposed to, that there is always a bigger plan. 

I have been so nervous for the past three years about having another baby but I now feel this has all been for a reason. (I will talk more about this in a blog post soon)  If we had two small children there would be no way we could travel and be a part of everything that has brought so much joy and purpose to my life. 

I am again reminded God’s timing is ALWAYS better than mine, even when I don’t understand it.