Jul 27, 2011

Every Day

We had our first meeting with the Muscular Dystrophy Clinic for Manny on Monday.  I have been so excited about this meeting for a very long time ... it's the offer of support, answers, services and people who "get it". 

We were greeted by a wonderful woman, Paula.  We've talked several times on the phone and she is amazing.  Manny, however, was crying his pitiful "scared cry".  You see, it's the same building where he has had MANY painful procedures happen to him.  He recognizes the parking lot and starts crying there!  I kept telling him "No owies" but he didn't believe me!

Random picture I like to call "Big and Little"
He was making quite the scene in the hallway.  I told everyone he'd sweeten right up. 

We got in a room and they started with the usual check up things like blood pressure and he calmed right down.  He started chatting it up with the nurses. 

Then Paula walked in and was so sweet to him and he had the most incredible conversation with her.  He was saying complete sentences about a sticker he'd just gotten.  "Diego kick the ball" and similar other sentences.  She asked the color of Diego's shirt and he said, "Yellow".  He named Letters and numbers. He impressed her with all sorts of other skills he had.  He said, "Bye Paula" when she walked out and she melted.  (He is not quite 25 months old.) 

I heard her talking in the hallway with the Doctor about how smart he is and how is he meeting many of the preK skills.  The doc walked in and said, "How old are you?"  And Manny would not even LOOK at the Doc! He refused to do anything or say anything the whole time he was in there.  Doc was not impressed! 

The Doc has been running the MD clinic for several decades.  There are MANY kids in their current clinic.  There are none with Merosin (Manny's diagnosis).  So he says he'll research it even more.  He could tell I was "up" on the diagnosis and even asked me if I knew of any treatment options I'd run across.  (No) 

We had some very frank discussions.  And most was just what I expected.  There was one thing that struck me though ... and it's taken me 24 hours to process what I've heard. 

I know it will be difficult to explain but basically it's in regards to prognosis.  No one knows.  I'm at peace with that.  I know Manny's life and the number of his days ... firmly in God's hands.  I know that one illness could take him out. 

With the previous diagnosis they didn't expect him to live until 1 or 1 1/2.  But from what I've read about Merosin, it's all about how much Laminin is missing.  Those who are missing some ... there are kids living until their late teens and early 20s.  With kids missing most, they typically live until about 8-10.  The kids with none ... they often don't live until age 2. 

Manny's muscle biopsy showed he had none. 

And in fact, he is soooo severe with his symptoms THAT is the reason the Doc didn't originally suspect Merosin when he saw him last year.  Kids with merosin rarely are tube fed.  They rarely have their stomach muscles quit on them.  They rarely show severe symptoms at birth. 

So all that said ... the doc says he is already living on borrowed time.  I think I knew that deep down, but ... it still takes the wind out of you in a way that you can't imagine unless you've lived it.  For the past 24 hours, it feels like I can't take a full breath. 

Now what changed? Nothing. 

But I did think we'd have at least a few years of not worrying about him and his lifespan.  But the truth is, I guess I needed to be made aware (again) that EVERY DAY is a gift.  EVERY DAY is a bonus.  EVERY DAY is to be celebrated. 

I don't live in fear or worry constantly (often, but not constantly).  And when I consider such things ... the thing that hits me in the face most is this:  How to help him live his best life?  What will bring God the most glory?

So today, I am made aware again of just how fragile and precious life is. 

EVERY DAY is a gift. 

What are YOU going to do with today?


  1. I'm so sorry Beth. No parent should have to process anything like that. But you are taking advantage of every day and giving Manny your fullest. Please keep sharing all of the Manny stories with us and write down everything about him so that you will always have it. We have ALL fallen in love with him!! I hope he continues to exceed the doctor's expectations.

  2. Beth, thanks so much for sharing this update. Our hearts are filled with humble gratitude for you and Dan and for your wonderful family and want you to know that you will continue to be in our prayers... with love and blessings, Ross and Tammy

  3. Beth,
    I recall sitting in church one Sunday and hearing the phrase 'Godly World View'. It was used in the context of how we view everything in our lives, not just spiritual things but everything. While I was reading this blog that came back to my mind. You see, I look at my Jessica with the Autism and I wonder what God's plan is for her. I, as you, don't worry one bit about her eternal life, it is just her life her on this earth that causes me pause. "What is your plan for her God?" Well, I received that answer quite some time ago and it was echoed in a prayer from one of my band members last night. He prayed about Jessica and thanked God for all the people she has touched over the period of her life and all that she will touch. God, in His amazing way, uses the 'broken' among us to teach us about being whole and loving unconditionally.
    Please know I am in no way comparing our situation to yours. Caring for that wonderful little boy has taken a toll on you, Dan and the family but at the same time I know what you have learned from that time will never, and can never be taken away from you. What I'm saying is the impact of Manny's life has already been more than some people who have lived many, many years.
    As I write this I remind myself you know all of this already. I just think it is important you receive the encouragement from a fellow brother in Christ and know the impact of your special little boy has been great on our lives. I also want to thank you both for your example of unconditional love and sacrifice. I shall never forget it for as long as I live.

  4. Oh Beth, you write so beautifully, even from a place of pain and heartbreak. My first reaction is that maybe that's not what he has after all. Maybe it's something else. Is that possible or am I in denial.

    The beautiful part is you know the secret that some people never learn, and your words are a sweet reminder that we should never, ever take it all for granted. For anyone, this day could be the last. What would people remember? Would people have seen God in me? I want to keep this in the front of my mind.

    I am praying for all of you.

  5. Beth, you remind us all, that every day is a gift, a gift for us and each of the family members we are blessed to have. Thank you.

    We need this reminder often, for as days turn to weeks to months to years, in the daily grind, we lose track of the preciousness of life.