A Lazy Saturday Morning...

I have a trisomy friend, Kara, whose T13 son's story has gone viral on YouTube and the Team Corbin facebook page has over 23k likes! He is in the hospital and had bowel surgery yesterday where a foot of dead intestines was removed. Before the surgery, they were given an opportunity to stop Corbin's journey. For children like Corbin, Rebekah, and others who are deemed chronically ill, incompatible with life, etc, there will always be a group of people who think we are going too far...torturing our kids as we push them through surgeries and medical procedures, and haul them from doctor appt to doctor appt. Kara posted a very heartfelt explanation:

"Many have asked, how far are we willing to go? The surgeon told me this morning, you do have the option to stop right here right now. My response was simple, "That's not an option." Many ask why? Some have opinions and wonder when enough is enough, well I'll tell you. Until you have a child that's sick, who fights every day to thrive, until you take every moment with grace, and I mean LITERALLY every moment. The second you get excited when your child sees the outside world. The second you are grateful to dress your child and the second you are grateful for every OUNCE your child gains; then you'd understand. Those kids, my kid, they fight for their life! They have no voice so we advocate. I advocate for my son what I think he can handle and my mommy instincts haven't failed me yet. I look into my sons eyes and I know. I know he isn't done. So that folks, is why we fight and why we aren't done yet.

I want Corbin to experience life! Life outside this hospital, life with no nurses poking him every day, no doctors waking him every morning. And I know with every chance we give him he's one step closer to THAT life."

Kara's words reminded me of the many times we've had some moments in Rebekah's life where we thought we might lose her, and the moments when we had to make decisions to give up or move ahead. And we would turn to Rebekah, and SHE would let us know it is not time to give up, and God's grace would get us through it. 

I can often see the look of incomprehension or disdain on people's faces when they see Rebekah's battle scars or even when they meet her for the first time and all they can see is a severely "mentally retarded" child who must be a burden to her family.  But if you took a moment to step outside of your world and into our world, you would see that this journey makes us stronger, it brings us closer to God... There is something defining about the grace and strength you can receive even when feeling deflated and broken. There is always a sense of God's presence watching over us - holding us in our darkest moment and rejoicing in the bright moments. 

I almost feel as if I am asleep as of late because life is a little surreal and somewhat normal. But Kara's post about Corbin woke me up. This picture below, this seemingly normal scene of 5 kids lazily watching TV from their family room couch, is much more than just a photo of kids watching TV. It is a picture of why we do what we do!! This is one of the dreams that all parents of children with life threatening disorders have - that their child will get to experience and participate in life right along with the rest of us, even something as simple as sitting around on a lazy Saturday morning. And if you pause for just a second and think about where we came from and where we are today, you might begin to understand what drives us to not give up on these kids!

 
 

Make Change Through Grace

“God appoints our graces to be nurses to other men's weaknesses.” -Henry Ward Beecher

If we only surround ourselves with like-minded people, we will never change the world. Or, worse yet, we may never change for the better.  Because, let's face it, we can ALL do something to become better people.

When I was pregnant with Rebekah, I stuck with an ob/gyn who was rude to my husband and I and refused to agree to our plan of an emergency c-section should Rebekah have difficulty during delivery. There were many issues, but he even said at one point, "I didn't go through all those years of school and my practice to deal with THIS." ('this' was my baby girl who he expected to die and this situation that he perceived as a hopeless waste of time.) 

Why did we stick with him? For practical reasons, I was close to full term and we didn't have a lot of options. But the real reason is because I knew that, despite his words, he wouldn't have a choice but to help us when it came time for delivery. I also felt in my heart that we just needed to be there and show our faith and strength to him. 

Well Rebekah surprised everyone!  When he came to visit us in the hospital a few days after her birth, he looked at Rebekah and said, "You made the right choice." He also told me that if he had another trisomy 18 pregnancy, he will manage it differently. That made it all worth it!  And it wasn't the point that Rebekah lived, because we were still very much in a questionable place. It was that we celebrated every moment and, despite planning a funeral and dealing with grieving a lost dream of a "normal" daughter, we were hopeful and loving and forgiving and full of grace.

Had we stormed off and changed our plan, or worse yet been ugly and rude, then this doctor's heart would never would have changed.  

Because of his change, I can face disapproving or negative medical staff (or people in general) and give them the benefit of the doubt. Sometimes, I find my view is changed along the way too, and that they really did have my daughter's best interest at heart.

How many people are in the world that have bad attitudes and erroneous views? And maybe all they need is a little grace and forgiveness?  And maybe that grace can result in a changed heart? And on the flip side, sometimes listening to opinions and views that differ from our can feed our own passions to do good in the world or remind us that maybe we need to change something about ourselves.

This journey is a tough one. We need to be gentle and forgiving to one another. 

“The burden of life is from ourselves, its lightness from the grace of Christ and the love of God.” -William Bernard Ullanthorne (1806-1889)

He is Risen Indeed!

As this Easter weekend comes to an end, I reflect on the awesome power of the cross and our resurrected Savior, and how that event changed the course of world history! The difference between Christianity and all the other religions out there is that OUR Savior IS resurrected (and theirs is not)! It is far more than a story, or it wouldn't have affected history as it did. It is far more than a story, or I wouldn't be the person I am today! I wouldn't feel compelled to change, grow, love... and I wouldn't have the strength or courage to endure...

In my own life, 4/21 marks another type of death and resurrection in my life. I was already a born-again believer but this experience has challenged me beyond my head knowledge of Christianity and faith and made me step out where I never would've asked to go. My daughter, Rebekah, was born with full trisomy 18 on 4/21/09 and was not expected to live. But she DID live. And I have been connected to countless others who are on this same journey, and some have had to already suffer the death of their child. In either situation, I have seen time after time the power of prayer and the strength and grace supplied to face this path. The experience has changed my outlook on life. My faith has increased tremendously along with my burden to share Christ with others. He has allowed me to find joy and peace in the midst of suffering, and unleashed a strength in me I never knew I had. Well, that's because it ISN'T my strength, it's from my Lord and Savior, and that is my point. It is so much MORE than a story! And this one point is only one of MANY things I could list as my personal eyewitness testimony to the power of the cross.

So He is Risen, indeed! How gracious and loving our God is and how amazing his grace!

And if this just sounds crazy and you don't have your own 'story' to tell, He is waiting for you to simply reach out and accept His simple and perfect gift of salvation. Then you, too, can realize the power of the cross and a resurrected Savior!