Monday, July 13, 2015

Must Be Nice

                         
                  Must Be Nice

 I have heard this phrase many times and have said it even more. Someone tells me their kids sleep until 8 or 9 in the morning or take 2 hour naps during the day or they just won free pizza for a year..."Must be Nice". Yes, I've said it, and now I'm sorry I ever did because it just sounds rotten. 

Several months ago a new neighbor was walking her dog when the bus picked my boys up for school. After the bus pulled away, she asked if it went to their school. I said yes, it goes to "said school". She was amazed that the buses pick students up at their driveways, so I explained to her that it was a "special needs" bus and it picks students up at their houses. And then she said it.."Wow, must be nice." Now, I'm sure she wasn't trying to sound mean and snarky but...wellllll...she did! The nice prayed through person in me thought, yes it is nice. It is so nice, you have no idea. I love that I live in a county that can provide such wonderful resources to families with children who need it. I love that I can see my boys off right at the house and that when the weather is bad we can wait inside until the bus comes. Then there's that other person in me who wants to scream. I try to keep her subdued...only by grace do I manage this. I want to scream...YES! It must be nice that your kids can walk to a bus stop, can climb the steps on their own, can sit in a seat without having to be strapped in because they have little upper body control! Heck, they could probably walk to school if they wanted or ride a bike..MUST BE NICE!! See that, what I just did there...rotten.

So I never said anything, I smiled as I often do and carried on. Until...the most Amazing and Fabulous news came that the boys were getting their Make-A-Wish!!! I may have shared my excitement with the wrong people...you know how the Bible says not to cast your pearls before the swine..well I guess I just never expected that I knew any swine. No, I never expected to hear "Must Be Nice" from, well from anyone in regards to a MAW. It makes my throat tighten to think about it. 

It is nice! It's absolutely a gift that these programs exist. It is so fabulous that they plan everything out for you down to the last detail. They make it all about the child. These boys will feel like absolute Rock Stars! For a brief time they will not be those boys with A-T. A-T is never invited on these trips. We will make memories that we can look back on, we will laugh til it hurts, we will indulge in tons of ice cream, we will take thousands of pictures and videos, we will not think about the future, we will not think about blood draws, therapies, and Dr. appts. So when you say it must be nice, I say yes it absolutely is and I am so thankful for it! But, it didn't come across that way. It came across rotten.

You see, the reason my boys get a Make-A-Wish, and they get it so quickly is because they are terminal.

That probably didn't register with you, and that's okay. I smiled and carried on. You will have years and years of family vacations and memories as you watch your children grow older. You will attend their sporting events, school graduations and see them off to college. You will be there on their wedding day and be able to hold and love on your grandchildren. You had no idea what you were saying. You have no idea how I wake up everyday and need strength and grace just for this day because the battle is long and lonely. Or how hard we fight for equal opportunities in education. How just going to the dentist is mentally and emotionally draining. How exhausted their little bodies are after a half day of school. How they will never be able to ride a bike. How children stare at them because of the way they move and the helmets they wear. How the intense guilt that rises up can eat away at me, because they were born with A-T, they had no choice. How they are going to suffer because of our bad genetics. How at night I go in and speak over them and cry out to God to do a miracle. How BADLY I wish it would be me instead of them!! And how they are going to die without ever really getting the chance to live. But you didn't know that when you said that one little phrase, you just had no idea. 

But then, you may never experience the grace of God like I experience everyday. The strength that he gives when I need it. The words that he speaks when I'm confused and weary. Forgiveness and mercy when I'm lacking. You may never learn to trust God in the capacity that I have. You might falter in the storm, rather than rise up. You might not understand the sovereignty of God. Your first response to adversity might be to try to remove it, mine is to understand that, that is God at work in my life. Because knowing that my boys have a fatal disease and a life expectancy of teen to twenties did not break me, but brought me closer to God than ever before. My focus cannot be on the trial itself, but the purpose of the trial and what God is working within me. He renews me day by day and I only get through each day by his grace. Because now I understand what Job meant when he said, "though he slay me, yet will I trust him". God has given my family an Awesome responsibility, because he trusts us. I guess the Bible says it best...

1 Peter 4: 12-13

Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad-for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world.

And that IS nice.


 

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