Saturday, July 1, 2017

Some ramblings about books and my biggest fear

So maybe this will be remembered as the summer of reading. I recently finished “Draw the Circle.” You’d like it. (It's predecessor is The Circle Maker). It's about praying for impossible things and that's always a favorite topic of mine. Last week, while on vacation, I finished “Blue Like Jazz." Faith chose it for our summer book club from a list of books teenagers should read before they go to college. Awesome. Because I'd been meaning to read that book for years. I don’t usually read in the car because I get sick, but this time I was able to stomach it on our drive to California, which was like a double gift. Because I was laughing out loud at his storytelling and then I had this captive audience in the car to whom I was re-reading portions out loud. Oh yes, they loved that.

We spent a day at Universal Studios, which was a blast but the rides are mostly the scary kind. I told my family that I am way too old to do anything I don’t want to do at an amusement park. So they let me sit with my book in a shady spot and read while they went on the scary ones. Mia noticed, “Mom, you’ve only been on two rides. It’s so sad.” I mean, I went on Jurassic Park and Minions. Minions was too much for me, so that pretty much sums up my ride tolerance.

“No no, this is exactly where I want to be, honey. Reading. Almost uninterrupted.”

We had left Reese back in Phoenix at Ryan House, which is a respite house for families with complicated children. I know that’s not the official description, but she stayed behind with her nurses, mostly because we cannot take her seizure medicine across state lines into California. It’s a long story, and the laws are stupid and the pharma industry makes me angry, so don’t get me started. But anyway, yes, it is very hard for us to leave her. Tears spilled down my face when I said goodbye. As hard as that is, it is probably healthy for me to take a break from being a caregiver. It took Mario and me a couple days before we completely relaxed. Because when you are a full-time caregiver, there is always something to be done. It is always time for something: food, meds, bathroom, therapy, water, repositioning. Ordering supplies, calling doctors. Always something. So I guess I'm not always conscious of it, but my mind is always thinking of what's next.
When I turned that part of my brain off and just sat and read my book, it felt really weird and good. That was what I really wanted and needed to do. I finished Blue Like Jazz between the drive and the Universal Studios shady spots. It was really good. If you’ve read it, I’d love to discuss it with you. I’ve heard it’s controversial and I’m not sure why. It’s the guy’s life story. I mean, can’t we let him have his story?:)

Mia chose for us to read “Let’s Be Real” by Natasha Bure for our book club. (In case you're confused, I started weekly book club meetings just with my high school girls and me. We read and discuss.) I’ve only just begun this book, but I’m pretty sure I’m not the target market for it. But Mia is and she’s loving it.

This week I’m reading “Nothing to Prove” by Jennie Allen. All by myself. Here’s the thing about books and me. I love to read, but I never allow myself to read just for fun. It’s like I have to be learning and growing and being inspired or else I feel like I’m wasting time and I feel guilty. Am I the only one? Maybe it’s part of the caregiver mentality. Too much to do to waste time. If you’re a therapist and you know what’s wrong with me, feel free to comment.

In Nothing to Prove, the author asked me (well not me personally, but the reader. You get it.) to write down answers to these questions at the end of a chapter called “No Longer Afraid”:

1. What is the worst thing that could happen?
2. So what if that comes true?
3. So what happens because of that?
4. So what happens because of that?
When you reach the end of the ‘so what happens,’ there lies your greatest fear, the one that keeps you in bondage. When you can name that, consider this:
5. Would God be enough for your greatest fear?

It’s not hard for me to come up with the answers to those questions.
1. We lose Reese
2. My heart would be broken
3. I would miss her and I'm not sure I can handle the pain
4. I would be sad for the rest of my life, and it would be hard for me to be anything but sad.
So there’s my biggest fear.

I know every parent fears losing a child. It’s the worst thing we can imagine. And I know that at any moment I could lose any of my children. But it’s different when doctors tell you that you will lose this child. It’s not a matter of if, but when. It’s a different kind of fear. It’s a day-to-day dealing with the fact that I love this child with every part of me but there is a very real possibility that I may have to let go.

I held her a little longer last night. Sometimes I hold her and smell her and think I never want to forget this moment. Mario asked why I was crying and laughing with her at the same time. It’s because I know that I love her so much that it actually hurts. Sometimes it’s a painful place to live—-between loving so deeply and knowing that it could end. But the beautiful part of it is that I know I’ve experienced a deep love. The kind that I think can only be found in brokenness, in mourning, in fighting for every little thing.

So I spent yesterday asking God, “Will you be enough? Will I be OK if my worst fear is realized?”

And the answer was yes. God reminded me how he has been enough for me, living with Reese’s terminal diagnosis, and He will be enough for me every day, no matter what comes. If I let Him. That’s been the key for me. He is enough for me when I allow him to be. When I ask Him to be. If I try to carry my pain on my own, it’s messy and ugly. But I have to believe that no matter what comes my way, He will be enough and He can be trusted. I have to believe that. Our lives roll along and sometimes we get a curve ball. That curve ball doesn't define us. But what we do next can. In my experience, I've realized that I choose whether I trust God in each situation. I choose trust or fear. I get to choose my perspective--look for the goodness, or stay worried and angry. But the even cooler part is that it is God who makes our hardest things good. Not just OK and smoothed over, but He promised us that he would cause all things to work together for our good if we love him and we are called according to his purpose. He makes all those curve balls good for us. If we allow it. I think that's why he added the qualifier "to those who love him and are called according to his purpose." Because we all know that we can choose bitterness and anger and worry, which are places where it's really hard for beautiful things to grow.

I've noticed something different about people who truly trust God. Their core identity is different from everyone else in the world. They are free to live and love and be in a way that makes people pay attention. When you meet someone like that, you know. I remember when I was a teenager, I was flying with my parents. The plane was dropping and shifting and bouncing all over the sky. I was white-knuckling the arm rests and reminding myself to breathe. My mom was reading a book in total peace. I asked her, "How can you not be scared, Mom?" She answered in a totally calm voice, "I trust God." I responded, "But what if we die?!?"
"I trust God with that too."
She didn't give me stats about plane safety or weather conditions or probabilities. It was just that she trusted God with our lives. I will never forget that. Her life is defined by trusting God. It is the core of who she is, so she doesn't worry about life and death. What a revolutionary way to live.

And you know what the truth is? Just because some doctors say Reese will have a short life does not make it so. The power of life and death is in God’s hands. Reese could grow up to be an old woman, and I don’t want to look back on my life and say, “Well, I sure wasted a lot of good days fearing death.” That would be a waste of a gift. That would be a stain on a miracle. I don’t want to do that. What does life look like, then, when we remove even our biggest fears from the equation? If fear is no longer holding us in bondage, then how would our lives look different? It seems to me, it is then that God sets us totally free. I know it's possible, but it has to be a lifelong journey toward fully trusting God to be enough. Day by day, moment by moment, thought by thought. No more fear.

Monday, April 24, 2017

Hummingbirds and Parenting


Yesterday was one of those Aicardi Syndrome mom days. I couldn’t really think or do. Whenever there is one in our Aicardi family who is clinging to life, it kind of paralyzes me. Knocks the wind out. Yesterday was no different, as we got the news that our friends are taking their daughter home on hospice to make the transition to heaven. It weighed heavy.

I escaped to a comfy outside spot. It was a beautiful day to pray and read and listen to the wind and the song of the mockingbird.

I read the story of George Washington Carver. Such a fascinating man. Born into slavery, he became one of the most influential scientific minds in American history. He discovered over 300 uses for the peanut and virtually saved the southern farming economy at the turn of the century. He had a habit of waking at 4:00 AM to pray. He would ask God to reveal mysteries of creation. And He would pray around this verse:
Job 12:7-9
“But ask the animals, and they will teach you, or the birds in the sky, and they will tell you; or speak to the earth, and it will teach you, or let the fish in the sea inform you.” And God revealed to him why he made the peanut. Fascinating!

Almost immediately after I read that verse, a hummingbird buzzed in front of me. It was as if she was looking at me, almost making eye contact. I was fascinated and delighted. She paused for a moment on the tip of the agave plant in front of me. I love to see them in stillness. I had considered it sort of an anomaly in the life of the hummingbird. She then flew up to a perch in the tree beside me. And she sat for 5 minutes in stillness. I asked God to allow this bird to teach me, as Job had suggested. She sat. She was still. I always see hummingirds buzzing and working and moving, but she took time to be still. And I need to be still. Specifically in the presence of God. As Mark Batterson says, “Get into God’s presence. That is the solution to every problem. That is the answer to every question…the Holy Spirit will reveal things that can only be discovered in the presence of God.” So true. I decided that was the hummingbird’s lesson for me.

She flew off. But then she returned a minute later. This time, she seemed to be spreading herself out on a tiny nest. Could it be? I went inside to google a picture of a hummingbird nest, and there it was. It had the circumference of a quarter, and the caption said few people ever see them because they are so beautifully camouflaged. They are carefully knit together with soft petals, leaves and silk from the mama. A soft nest for two tiny bean-sized eggs. I got to watch her in action, and I felt like God was speaking to me again. This mama. She’s doing everything she can to take care of her children. She is doing her best. She is doing her part. And then she has to rely on me to do my part.

Parenting can be so hard. Parenting toddlers is hard. Parenting kids with struggles (which is all of them at one time or another) is hard. Parenting teenage girls is hard. Parenting a child with a terminal condition is really hard too. That’s no surprise, I’m sure. But we are not alone. We are in a partnership with the One who created them. We do our part, and then we can pray and trust and pray and trust and allow God to work out some of the heavy lifting on his end. We can pray for those impossible things and then wait in stillness. In peace. I told my girls about my encounter with the hummingbird. Olivia asked, “Do you think hummingbirds pray?” Probably.:) She sure knows a lot about parenting and I’m pretty sure I know who taught her.

I was hurting. I went to sit with God. I prayed for our friends. I read his Word. His bird came to say hello. And then she taught me about God. Mind blown for the day.

“But ask the animals, and they will teach you, or the birds in the sky, and they will tell you; or speak to the earth, and it will teach you, or let the fish in the sea inform you. Which of all these does not know that the hand of the Lord has done this? In his hand is the life of every creature and the breath of all mankind.”
Job 12:7-10

Maybe you need to let God to do some of the heavy lifting today.

Friday, February 24, 2017

Lessons from the ER

It was Valentine’s Day. Mario and I had a nurse scheduled to be with Reese, and he and I were going to go out for a lover's breakfast. Ha ha. Just kidding, I hate that word, "lover." But we ended up in the Emergency Room. Reese was diagnosed with pneumonia. We looked at each other with that familiar disappointment. Our plans changed suddenly by our little, fragile one.

We chatted with our nurse. “These weren’t our original Valentine’s plans.”

She responded, “You are here because you love her. And that’s what Valentine’s Day is all about.”

Yeah, girl. Yeah. I loved that she said that. I felt seen.

Before we left that day, she said, “I can tell you guys take great care of her.”

We felt seen. In fact, that is one of the most meaningful compliments I can receive. I’m not exactly sure why. Maybe a psychologist can answer that. It’s not the same as, “You’re a great mom.” It’s deeper. It’s a phrase that implies, I see you. I see the work you are doing and it matters, mom. I dunno. It feels really good to me.

We ended up in the ER again with Reese 5 days later. She seemed to take a step backward in her recovery. It was also Olivia’s 13th birthday, so I tried to convince myself it would be a quick stop and we would be home to celebrate in a hurry. Our nurse on this day commented on how siblings of kids like Reese learn to be very others-centered because of circumstances like this. Thanks for seeing Olivia.

We ended up staying for 8 hours. Weekends in the ER seem to move a little slower. Our room was situated right by the parking lot, where the ambulances pulled up and unloaded children. I tried not look. But I did notice that a Sheriff’s vehicle sat outside our window with its lights flashing. Two things I’ve learned over the years: Pediatric ER nurses are some of my favorite people and the ER can be a scene for drama. As we were packing up to leave, I asked the nurse about the Sheriff. She closed the door and told me in a hushed tone, “We had a drowning today.”

My heart dropped. I caught my breath. We walked toward the exit of the Emergency Room, and we passed the family being escorted in by two security guards. The woman who I assumed was the mom was still in her pajamas and her face told the story. The extended family surrounded her. One of the men locked eyes with me. I gave the smallest smile I could give in an effort to say, “I see you.” He then looked at Reese longer than a moment. In my mind, I imagined he was thinking, it’s not fair that you get to leave.

It’s taken me several days to be able to talk about this. In some way I felt like I was a part of their story. We were there. We were there when he arrived. We were there when he was pronounced dead. We were there as the family was being escorted in. We exchanged glances. It hurt to be a part of their story.

I think one of the hardest parts of being in a crisis is seeing the rest of the world carrying on while you are screaming, and feeling as if nobody can hear you. I remember the days after Reese was diagnosed with Aicardi Syndrome, seeing kids riding bikes and playing and people smiling and taking out the trash. I wanted the world to stop for a moment, but it wouldn’t.

People need to be seen. People need more love. There is always room for more of that. Pick your head up and look around. Who needs to be seen and acknowledged and loved a little more? There are probably people in my life right now who are screaming to be seen. I’m asking God to show me who they are. And to have enough care and love to do something about it.

One family walking out the door to go celebrate a birthday while another walked in to see their child for the last time. These are the things that are so hard for me to reconcile, and the only answer I hear from God is this: LOVE MORE. It’s actually the answer to almost everything. More love. And then a little more. I will probably never see this family again. But I can pray for them. And I can remember them, remember their faces, and allow them to soften my heart toward others who need more love, need a word of encouragement, need people who care, who need to be seen.

Saturday, January 14, 2017

Look for the Shimmer

The other night I was putting Reese to bed. She was gazing into my soul, and I into hers. We laughed and we hugged. It’s my favorite thing. I held her tight and begged God not to ever take her away.

I used to cry out to God and ask why. Why did you allow her to have Aicardi Syndrome and seizures and so many struggles. Why did you allow me to have a child who would receive such a diagnosis. Why, God? I just need to know why. If I know why, then I can move forward.

People would give me answers. You must have sinned. Or maybe Mario. Did you have an affair? Or maybe your ancestors sinned. Our doctor said it was bad luck. Some would say, “It’s because of the fall. Sin entered the world at the fall of man. We live in a broken world, you know.” This never satisfied me. Because why doesn’t your child have Aicardi Syndrome then.

That night I felt the fullness of joy that Reese carries with her, and I was thinking of that pat answer. And I say no. no. She is so much more than the result of the fall. She is not merely the consequence of the sin of Adam and Eve. She is a beautifully thought out, created daughter of God, who carries with her something. Something I cannot even define, but can only be described as a foreshadowing of what heaven will be like. When love is totally pure. When joy is not affected by daily circumstances. When relationships have all of the good stuff and none of the downside. She has it. She is so much more than what you describe. Please stop saying those things. John 9 provides a perfect answer to me--it is all for the glory of God. To point people back to God. The truth is none of us knows all of the whys behind Aicardi Syndrome, but I can tell you that I don’t care why anymore. The why doesn't matter because the what is so beautiful to me.

The next morning, I opened a devotional (Savor, by Niequist) and read this:

“When you realize that the story of your life could be told a thousand different ways, that you could tell it as a tragedy, but you choose to call it an epic, that’s when you start to learn what celebration is. When what you see in front of you is so far outside of what you dreamed, but you have the belief, the boldness, the courage to call it beautiful instead of calling it wrong, that’s celebration. When you can invest yourself deeply and unremittingly in the life that surrounds you instead of declaring yourself out of the game, once and for all, because what’s happened to you is too bad, too deep, too ugly for anyone to expect you to move on from, that’s a good, rich place. That’s where the things that looked like curses start to stand up and shimmer and dance, and you realize that they may have been blessings all along. Or maybe not. Maybe they were curses, but the force of your belief and hope and desperate love for life has brought a blessing from a curse, like water from a stone, like life from a tomb, like the story of God over and over.”

And then it ended with a question…What events in your past felt like curses and turned out to be blessings?

Ummmm I have one.

Sometimes I hear how people talk about their children as such a sad story and I think to myself, I see it so differently. But I think that’s the point. We get to choose how we see it. When we see our children as beautiful and focus on the celebration of those unique beauties, that’s when those things that people may call curses, or the result of the fall, or even those things that were intended to harm us, those things stand up and shimmer and God says, oh no way. I love her. I meant this for good. Shall we celebrate?

We get to choose how we see things. One of the greatest lessons Reese has taught me is to ask God, “Will you show me how you see this person? Let me see what you see.” Oh man, try it. The world changes.

Wednesday, December 21, 2016

Christmas 2016

Merry Christmas, Friends!

I have so many things to tell you! No card again this year, but here's a blog. Maybe next year? We made it through 2016, friends. We made it together. Hopefully we are all still friends. That's a joke--of course we are!!

Let's start with our youngest. Reese turned 9. She had a banner year. A banner year! Not one respiratory illness in 2016. We had one hospital stop, as the altitude and allergy combo in Flagstaff was not Reese's favorite thing. One ambulance ride down to Phoenix, no biggie. But other than that, she's been HEALTHY! And Happy! And laughing and communicating and loving because that's what she does best. Cannabis oil (CBD) has reduced her seizures by 70%, so whenever you hear people talk about Medical Marijuana as a "charade", etc., please tell them about the sweetest girl you've ever known. We have to be her voice! I was just thinking today about all of the love Reese has brought into our lives--first and foremost, just in being who she is. She's 100% love to us. She also attracts love to our home. Her therapists and nurses and teachers and doctors and fellow special needs families. We are surrounded by a lot of loving people, and as one friend recently commented, she has increased our capacity to love. I loved that. So to you, I want to say, if you are dealing with something hard right now, just wait. Stay close to God and know that He can make it beautiful. Not just OK, but actually beautiful. Just wait and watch and allow him to increase your capacity to give and receive love.

Olivia. 12. Sweet little thing. She surprised all of us this year with her performance in Elf the Musical. She told me her audition was terrible. She said was so nervous and awkward. And we believed her! Then they gave her a lead role and she shocked us with her ability and confidence. It was a joy to watch her because of all of those things. She loves music, her friends, and animals, and being creative, and she started a "slime" business with her buddy. If you're wondering what that is, you can follow them on Instagram at ThoseSlimeGirls. Little entrepreneurs, those two. She's a joy to live with--God speaks wisdom through her to me all the time. This morning she told me, "I was praying before I went to sleep, and then I said Amen and I woke up and it was morning!" Special kid. It's really awesome to be her mom.

Mia. 15. Full of life. Everything about Mia is big. Big voice, Big beauty, Big personality, Big heart. She's fun, independent, witty, smart and loyal and sometimes a little crazy.:) She loves her friends and music and singing loud for all to hear and softball and good books and Reese. She's her sister's keeper, which is one of my favorite things about her. She loves her youth group too--yea for youth group! And she entered her first voice competition this year, where she received an Honorable Mention from the judges. I was so proud of her! Hooray for courage! She can't decide if she wants to be a NICU nurse, an Occupational Therapist, work on Broadway, or pursue softball, but whichever way, she's going big.:)

Faith. 17. Tender-hearted one. Faith is full time at Shadow Mountain High School this year. First time in public school, which she described as "The best thing that has happened because I've learned how to really trust God day by day.:)" She officially signed to play golf at the University of Montana in November. She will be leaving us in August to go off and turn into an adult or something. We are so proud of her and she's so excited, so we are all excited. She's a sweet spirit, family girl...who's moving far away to Montana. But because God describes himself as one who does "more than we can ask or imagine," I'm not surprised that one of her very dearest life-long friends may be joining her and rooming with her. I mean c'mon. More than we could ask or imagine. She loves the Lord, loves to engage in important conversations, she's funny and fun, and she's so beautiful inside and out. I'm going to miss her like crazy, but we have plans to FaceTime every night during dinner, so I'm thanking God for technology. Right??

Mario. Let me tell you a story. The other day I met a grandpa who lives in Texas. He told me he remembered Mario from Mia's 8th grade graduation (His granddaughter was in her class). He said Mario prayed at the end of the ceremony, and he approached Mario afterward and said, "You pray like you know Him." Then he said, "I'll never forget what he told me next. When I asked him about what he does for a living, he told me that his mission is to make sure everyone knows about Jesus and then to get the heck out of here. I've never forgotten that and I tell people about him all the time." That pretty much sums up Mario. He knows God and He really loves Him. And He wants everyone else to know Him too. So he's dedicated his life to make sure that happens. (He runs a non-profit called Death2Life Revolution, in case you don't know: d2lrev.com) And the truth is, when doctors tell you that your child will beat you to heaven, you really keep your mind and heart there. Some of you will totally get that. But then again, Jesus told us to set our minds on things above, not on things here on earth, so it all makes sense anyway. He's always been Faith's number one fan, and now he will be the Griz Nation's number one fan--get ready for Mario, Montana!

Kerry. God has moved things around in such a way that I have to accept nursing help. Our favorite nurse left for a hospital job earlier this year, but now she has decided to come back. I told you Reese attracts love! She can only do so if she works more hours. So I have lots of help and it's such a good thing. But it does kinda make me laugh to see how God made it happen because I hadn't always accepted it. After dreaming and researching for the last year, I launched an online clothing boutique in November called Ellie & Adair: ellieandadair.com, and it has been SO MUCH FUN. It made me realize that God IS so much fun. Matthew 11:30 (MSG) says "Walk with me and work with me--watch how I do it. Learn the unforced rhythms of grace. I won't lay anything heavy or ill-fitting on you. Keep company with me and you'll learn to live freely and lightly." He's taught me that I need to actually enjoy my life. I can choose to walk in duty and stress and to-dos, or I can just enjoy my people and my Savior. I don't know if you've done that your whole life, but I don't think I have. I will have 3 teenage girls in February. Of course that comes with some challenges, but one thing that has been really delightful is watching them turn into the type of people I would choose as my friends. I didn't expect that.:)

We love you so much--you, the one reading this. As I write this and think of you, I feel LOVE for you and from you. YOU have unique gifts that no one else has--really, NO ONE. Some people may have similar gifts, but no one has the combination of gifts that you do and no one ever will. Consider it. Don't ever ever lose sight of that, and know that you are LOVED by God (so loved--take a moment to ask him to show it to you) and by us, and you are needed and valued and YOU are so special. It's true. We have lost friends to suicide this year. The enemy of our souls is a liar, and he doesn't want you to believe the truth about who you are. I hope you know that you matter and the world would not be the same without you. And I hope you know that you can always talk to us or someone at www.d2lrev.com if you want to be anonymous. I just had to make sure you heard that!

Now to another really important part...

I love this translation of Isaiah 9

For a child has been born—for us! (That's Jesus)
the gift of a son—for us!
He’ll take over
the running of the world. (You know how you're worried about the government? That's on Jesus)
His names will be: Amazing Counselor, (I need one of those)
Strong God, (Yes, Jesus is God)
Eternal Father, (He will never leave us and cares for us like a good father does his own children)
Prince of Wholeness. (He makes us whole)
His ruling authority will grow,
and there’ll be no limits to the wholeness he brings.

No limit to the wholeness he brings! That is the good news of Christmas. May you experience that "no limits" kind of wholeness this year. We love you.:)

Merry Christmas!

Love, Kerry, Mario, Faith, Mia, Olivia, and Reese

Tuesday, October 25, 2016

Something Terrible or Something Beautiful?

Reese is 9 years old today!!! Happy happy happy birthday to my sweet baby girl!

I always write something on her birthday.

Here’s what’s on my mind today.

A friend sent me a message the other day. She mentioned a couple things: she appreciates my honesty in sharing my struggle in raising a child with special needs, and she appreciates my obvious decision to not weigh in on politics this year. Because I don’t like to speak publicly about politics, she asked where I stand on the subject of abortion. I don’t know her political stance, but she got my attention. Lest you misunderstand, I found it to be very loving that she asked instead of assuming or lecturing. Asking questions is a good way to start conversations, btw.

In the presidential debate last week, when asked about abortion, one of the candidates answered this way:

“I have met with women who have, toward the end of their pregnancy, get the worst news one can get, that their health is in jeopardy if they continue to carry to term. Or that something terrible has happened or just been discovered about the pregnancy. I do not think the United States government should be stepping in and making those most personal of decisions.”

It stung. I hear “something terrible has just been discovered about the pregnancy.” And the implication is that no one would ever want that kind of baby. And we all agree that it would be OK to take care of that so no one has to live with or deal with that kind of terrible thing, right? It felt like half of the world was nodding.

I heard it. I was that mom who discovered that “something terrible” kind of news while she was pregnant. At 14 weeks to be exact. And I lived in uncertainty for 24 more weeks. It was painful. But that pain was not wasted. It was all used to teach me to trust and to keep company with God.

When my friend asked me about my position, part of me was horrified that maybe, in being honest about my struggles, I have given the impression that I wished abortion had been an option for me.

If there is one thing I want the world to know, it is this. I love raising Reese. I hope you know how much we love and adore her. I hope you see our joy and the way her sisters adore her. I love everything about her, and I love what she has taught us. Raising a child with special needs is not what I expected it to be. Of course, it is hard sometimes. But I would not change it. I would do it all over again because it has been the most beautiful experience of my life. I realize that may be hard to understand and I concede that it is sort of a mystery.

Because of Reese, some of Jesus’ words finally make sense to me. Some words that just didn’t fit in my world before she was in it.

Like “Blessed are the poor in spirit, for theirs is the kingdom of God.” In other words, I hear Jesus saying, you will be happy when you are at the end of your rope. When you are at the bottom and you have nothing left. Because it’s then that I will take care of you, because no one else can, and you will really know me. And we will develop a friendship and an intimacy that you have not known. And that is what I really desire for you. That is heaven on earth. That is what Reese has brought me.

Or, “Blessed are the pure in heart, for they shall see God.” Or in other words, you know those really pure-hearted people? The ones with zero pretense? The totally uninhibited ones? The ones with pure motives, who love unconditionally and don’t know how to love otherwise. Have you ever wondered why they are so happy? Those are the ones who really see me at work around them. Those are the ones who have a very special relationship with me. Those are the ones who truly know me. And we get to live with one of those people.

This is not a post about abortion. But I hate abortion. When I heard that discussion in the debate, I was sad for us, because it felt like the world was collectively devaluing Reese. But I was also sad for all of the mamas and daddies who have missed out. They missed out on the precious, depth of life that was intended for them.

Loving Reese has been joy, fulfillment, depth, trust, soul-searching. Getting real, digging deep, finding out who we are, loving unconditionally, being loved unconditionally, seeing all people differently. Learning from a non-verbal child how to be content, how to love what is, and how to really know God.

I cannot even tell you the wonder and love she has given me. And I know she has taught me to love fully and be loved fully, by our Creator and by each other, and to know that that is enough. Her 9 years have been something very very beautiful.

Friday, October 21, 2016

She's turning 9 and I just had a few things spill out of my soul

We are approaching Reese’s 9th birthday. They told us she would have 7, so we’re pretty dang happy about 9. But each birthday brings a tidal wave of feelings with it. Memories of nine years flash like a highlight reel, each bringing with it its own, tailor-made emotion. Some are sweet and deep and beautiful. Some are gut wrenching.

But the most important thing I have to say about raising a child with a serious medical condition. With a short life expectancy. With global delays. With severe disabilities. What I have to say is that this isn’t what I expected. I expected sadness, and instead I found happiness that I did not know was possible. I expected depression, and instead I found a deep relationship with God. I expected a horrible life, and instead I uncovered the life I was meant for. A sacred, different life. Sometimes exhausting. Sometimes stressful, but still sacred. I expected to feel very sorry for my daughter, but instead I am fascinated by her peace and contentedness and unconditional love.

The other thing I want to say may only apply to me. I assume it is true for all parents like me, but I’m not certain. When I was told that Reese had Aicardi Syndrome, and I Googled it, and I saw the words “7 years” in what seemed to be flashing red lights, it felt like a limb had been ripped from my body. The pain was so excruciating, I didn’t think I could recover. After a few years, I was surprised by how much I had healed, but that wound was still there. It was scabbed over, much more comfortable to live with, but I know it will always be there. It’s not a painful type of wound anymore but a very sensitive one. Not one that I despise, but one I am aware of. In the same way the Apostle Paul said he had a “thorn in his flesh,” my wound keeps me tender, and keeps me close to God.
I can keep it bandaged, carefully maneuvering around corners, so I don’t bump it. But it is easy for that wound to open. When someone asks me about her and truly wants to hear the answer, when the doctors talk about her, when I watch her sleep, the wound opens and sometimes bleeds a little. Not because I’m sad anymore. But I think because every day of her life, whether it is conscious or not, the thought is always in the back of my mind, could it be today? It is always there, the real possibility. That is the wound.

And every birthday brings with it the question, will there be another?

A friend once said, “There’s more to you than just Reese.”
Your reaction to that statement will be based upon your perspective. You may think, that’s true. From my perspective, for Mario and me, it was painful. Because most people don’t understand that we are walking around with a limb torn off. We’ve learned to overcome and to function without that limb, with that wound, but it is hard to be bothered by the things that used to bother us when that wound is there. It’s kinda like me walking up to your car after you’ve been in an accident and asking, "what’s for dinner?" You can’t really think about dinner when you’re dealing with that bleeding forehead. So when you ask me how you can pray for me, the first thing that comes to mind is the wound. It’s just always at the forefront. And to imply that you’re done hearing about it makes me feel unseen.

I know I have changed over 9 years. I know I feel things very deeply. I know I cry easily. But not because I’m sad. Because I’ve discovered a depth of my soul that feels things way, way down there. Some would say I’m intense. Some friends quietly bowed out of my life. That’s OK because others entered. I hope you understand, I’ve had to learn to live with an open wound. And for me, it is not the pain of the disability. Because I have found depth and beauty and so much love in disability. But the pain comes in the anticipation of losing her.

Reese has brought me more than there are words to explain. I love everything about her. I wouldn’t change her and I would do it all over again if given the choice. She has taught me to love unconditionally. To love what is. And she’s taught me what it looks like to be loved and to stop hustling for someone else’s idea of worth and acceptance. And I’ve learned from her that knowing you are loved no matter what, no matter how you act or what you do or don’t do, is really what every human needs and desires. And it is what releases true freedom in the human soul.

So in honor of Reese’s 9th birthday, would you take a moment to ask God to show you who you are requiring to act, behave, believe a certain way before you will love them? And then respond by loving what is. Maybe ask them to forgive you. Oh, was that too much?:) Then ask God to show you how much He loves you. Listen, watch, and then believe Him. It may be revealed in a thought or in an action done by someone else. But it is from Him. Because I know that every good and perfect gift is from Him. Reese didn’t tell me that’s what she wants for her birthday, but I’m pretty sure that would make her really happy because she’s unselfish like that. Happy birthday, my darling, delightful nine-year-old girl.

And by the way…Here’s how the Message translates the words of Paul. I looked this up after I wrote this blog:

2 Corinthians 12:7-10
“…I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me,

My grace is enough; it’s all you need. My strength comes into its own in your weakness.

Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over. And so the weaker I get, the stronger I become.”