Tuesday, March 18, 2014

Ache

"Just a reminder to continue to give treatments as prescribed by Alexis' doctor. They will... uhm... Well, they'll help prolong her life."

She called from the CF clinic in Dallas; just a routine reminder. I'm sure I wasn't the only one on her list. It wasn't so much what she said, but the way she said it. That pause like she knew what she was going to say would bring up buried emotions for me. Like she knew those words, "prolong her life" meant that my daughter's life needed help in that area. It stopped me in my tracks that morning and her "uhm" rang in my thoughts the rest of the day.

I knew that feeling. That ache.


I had never heard of Cystic Fibrosis before August 16th. I never knew anybody that had it, never learned about it in school, never had a reason to Google it before. Her pediatrician called me sounding somewhat panicked. We were supposed to have an appointment that day, but we rode to Dallas with Micah for a job instead. I postponed it. I shouldn't have. I picked up the phone to hear that kind voice start with, "I didn't want to tell you this over the phone, but I couldn't let it wait any longer." She said her newborn screening came back positive for CF. She said we needed to do some other testing to make sure and that she was sorry. She choked back tears as she was clearly dumbfounded "because of Ben's diagnosis." I told her I didn't know what CF stood for and I certainly had no idea what it was. "What is that? Like a bad cold or something?" She explained some aspects of it, but I Googled it on our drive back.


Micah got it right away. It took me a while. I really didn't understand. Maybe it was denial. You bet your sweet bippy I questioned every last morsel of God's plan when it really hit me. It took a week to get the sweat test results back, but I already knew. People told me not to worry. "It says those newborn screenings are usually wrong." But I knew. I still cried, though. It still hurt to tell people.


I knew about Down syndrome.  It didn't feel like it at the time, but I knew more than I gave myself credit for. I still ached, though. It's still hard to know Ben needs extra help. It still sucked to tell people. So, in a way, I already knew how that ache felt before August 16th. I had felt it before.


I've written about this in the past. This saying, "God doesn't give you more than you can handle." I'm just going to reiterate that it's a load of crap. I hear this saying a lot too; "I don't know how you do it." Come on, people. You don't know how I do it because you've never had to. People said the same thing when Micah was in the sandbox. I was a single mother with a son with Down syndrome. It looked impossible. It wasn't. God gave me more than I can handle, even then. But life still had to go on. You probably don't think so, but you would do the same thing. Life doesn't stop happening just because it gets hard and God doesn't stop loving just because we think so. Our agenda, our feelings, our actions toward others (more on that one another time) - all things that God is working hard to shine through.

Life goes on. God's still there. Love wins.

Just remember that.

Sunday, March 9, 2014

Changes

There is an appointed time for everything. And there is a time for every event under heaven: 
Ecclesiastes 3:1

Sorry for the absence lately. Truth is, I'm still trying to navigate whatever this normal is around here. Things are changing constantly. Some are quick, painless changes while others are long and painful. It's hard to know when to write it down for fear that everything I write will be about the long and painful side. So sometimes I just hibernate and try to work it out for myself.

                                

There's a time for everything. Good, bad, ugly and indifferent. Lately, I've teetered somewhere in the middle of those. We've had some good days. We've had some ugly days. We've had some, "I want to give up days" and we've even had some mellow, indifferent days. All of those are okay. Like that lonesome February post said, God is in it all. Even if nobody else is, He is there. That's been a heck of a lesson for me.


People are afraid of what they don't understand. People don't understand my normal. Are we following? It's been a lonely road. Friends, family: two things I used to be good at. Things I used to have. Things that are few and far between most days. Things I need. Things I miss.

There's a time for everything. Even loneliness. Even hurt. Even sickness. Even those hard questions about the future of our family and my children. God's not surprised by any of it. And I'm glad.


As far as the changes happening around here:

Moving to Mayberry is proving to be one of the best decisions we've made. Ben will turn three in just a few weeks (Seriously?) and with that comes the milestone of "graduating" out of ECI and moving on to school. Early Childhood Intervention is a state funded therapy option that Ben has been a part of both here and in Florida. We've been blessed with some of the best therapists in the world, and Ben has made so much progress in all aspects of his development because of these fantastic ladies. Starting school will be a hard change for this mama bear, but a good change for him. We've met with the teachers and therapists who will be a part of this next phase and I couldn't be happier with who God has placed in our lives. Mayberry has been good to us and God's not surprised by that either. Now if I could just get used to this new independence that will accompany my three year old. Phew!


Alexis is growing into quite the little bundle of joy. With the exception of some sleepless nights the last few weeks, she has been a happy eight month old. We will be heading to Dallas this week for her monthly appointment and I'm always hopeful for good news. Not gonna sugar coat it: the news is rarely wonderful, but they take good care of her and, even though it's a long day, I know she is in good hands.

As far as writing is concerned: some new changes will hopefully be happening with this little space on the web. I'm really looking forward to seeing what God does with our story. "If you've got a book in you - for God's sake write it." We'll just leave it at that.

Happy Sunday, friends. Be encouraged knowing God's not surprised with your life just like He's not surprised with mine.

Life's not always easy, but God is always good.