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.”

Friday, June 17, 2016

I Do Not Have Leukemia

This story begins on the bathroom floor. I was the kind of sick where I slept on the tile and didn’t care. I had determined I was dying of Listeria poisoning from the Caprese Salad I had eaten at the fancy Italian restaurant, and thought I should probably see the doctor before the long Memorial Day weekend. You know, to save my family from finding me dead on the bathroom floor. Too dramatic?

The doctor drew blood, since I hadn’t been in to see her in 6 years. Woops. I guess I’ve been busy keeping someone else alive.

She called on Tuesday with a sound of concern in her voice. “How are you feeling?”
“I’m all better. It must have been the flu after all.”
“Really? No more chills and fever and vomiting?
Because your labs do not match up with that. Your blood count is extremely low and we want you to have a hematology study done as soon as possible.”

Sensing her urgency, I probed, “What are you worried about?”

All I heard her say was, “Blah blah blah Leukemia.”

I made the appointment and we waited 9 long days for the test. I’ve realized 9 days is a loooonnng time when a mom hears the word Leukemia. My mind went to places that included my funeral, Mario’s remarriage, setting up full-time nursing for Reese. You know, the really dark places. Not good. But based upon the title of this story, you know I’m not dying. The test came back with blood counts in normal range.

In those 9 days, I learned a few things that I thought I should share. Because I have a need for my pain to be used for good in other people’s lives. It’s a thing.

Here’s the really deep part. Trusting God means trusting him with death. I realized it’s really easy for me to “Trust God” to heal me. And Reese. I have big faith and I know He can do anything. But to trust Him no matter what the doctor says—to trust God with life AND death—that is a stretch. To be able to say, If I die, I know you will take care of my family—that hurts. That one is hard. I have a child who depends on me for ev.ery.thing. And I have three teenagers (almost) and a husband that I adore and who need me. That took me to a place of ruthless trust.

I hate to say it, but I feel like I failed the test. My heart was beating out of my chest for nine days. I found myself crying in the shower. You may say, Oh that’s normal! It is unless we are not normal. I believe God allowed those 9 days for a purpose. To show me how out-of-joint I could become. “It is one thing to say, ‘Do not fret,” but something very different to have such a nature that you find yourself unable to fret. It is easy to say, ‘Rest in the Lord and wait patiently for Him’ until our own little world is turned upside down.” (Oswald Chambers)

I had moments where I surrendered it to God, where I felt total freedom to say, “Whatever you want, I trust you.” And then I had moments where fear overwhelmed me. And I believe God allowed me to see that what he wants for me is a nature that is unable to fret because I know that there is nothing He cannot handle—with or without me here on earth.

Yesterday, I listened to one of my favorite songs and my body cried, YES! It sums up what He taught me last week.

“Take me back to the place where my heart was only about you; and all I wanted was just to be with you. Come and do whatever you want to. Further and further my heart moves away from the shore; whatever it looks like whatever may come I am yours.” (Bethel Music)

Whatever it looks like, I trust you, God. My circumstances are not too much for you. I will not fret because I cannot fret because it is not in the nature of one who trusts God’s plans. That is peace. Oh yes.:)

Monday, May 9, 2016

"I Did Good"--Lessons from the Pure in Heart

My teenagers volunteered at the Special Olympics games last week. Their job was to distribute the medals to the coaches, who would then present them to the participants. All day, they watched athletes take the stage and receive their medals with wide grins, fists in the air, the occasional jump of joy. They told me about one girl, however, who when presented with her silver medal, began to cry. She even turned her body around in a sign of defeat. What happened next has stayed in my heart for days.

A teenage boy, who was upset by her tears, scooted down the stage toward her. He tapped her on the shoulder, placed his gold medal around her neck and said, “Here you go. I did good.” And He smiled big.

The purity and kindness of that almost stunned me. The thought that kept running through my mind was...who does that? Have I ever known anyone to do something like that? The answer is: only those who are pure in heart. I know a heart like that--I live with a child with special needs. Her pure spirit is of the highest value to me, and is something so special to God, so unique to humanity.

Because it seemed like God kept hitting replay on this incident, I took time to get quiet and ask Him what He wanted to show me. Here’s what He said.

You want to know who does that?
He reminded me of all of the people who have shown us extraordinary kindnesses over the years.
We needed a wheelchair van, and friends, family and even strangers gathered the money to make it happen. We spent weeks in the hospital with our daughter, and friends and family took care of our kids and meals and visited us to keep us from getting lonely. The many words of encouragement and hugs and gifts over the years that just said, “I see you. And I care.” Our daughter’s teacher, who wrote us a check to help with medical expenses. Our hairstylist who comes to our house to do 5 girls’ hair and refuses payment. All of those people are like this remarkable boy.

No matter what it is, there is some place in your life where you "did good.” Maybe you have more money than you need. Give it to someone who needs it. Maybe you have been given lots of love in your life. Share it with those who haven’t. Maybe you have encouragement to offer. Bless others with your kind words. You are “doing good”…somewhere. It’s not meant for you to hold onto. It is meant to be shared with someone who needs it. I’m certain we are God’s plan A for taking care of one another.

Matthew 5:8 says, “Blessed are the pure in heart for they shall see God.” I’ve often wondered if my special friends have a jump on the rest of us when it comes to this blessing. Maintining a pure heart seems to come naturally to my special needs friends, while the rest of us need to continually keep our inner lives with God in check. The bible promises that those pure-hearted ones will have no problem seeing God at work around them. But I often feel like the blessed one, because I get to see God’s love at work because of them.

Monday, May 2, 2016

To the woman who called me disturbing and disgusting, thank you.

You wrote us an anonymous email. You said that our views on medical marijuana are “disturbing and disgusting.” You also added some other things about how God will judge us soon, but that disturbing and disgusting part…that hurt the most.

I just wanted to say thank you.
It took me a lot of time to sort this out. Because your words wounded me deep. But in that quest for the healing of my heart, I realized that I can thank you. And that has brought healing in itself.

1. Thank you for cementing my resolve that I would do anything to help my daughter. I give her medical marijuana through her feeding tube three times a day. It is a strain that is high in Cannabidiol (CBD), low in THC so she does not experience the high that is usually associated with the drug. Since we started it a year and a half ago, her seizures have been reduced by 75%. This is after 7 years of watching her seize every day. After trying 10 different anti-epileptic drugs without great success. Imagine lots of tears and sleepless nights mixed in. Do I have one regret about medical marijuana? Not one. Would I run through a glass door if they said that would stop her seizures? Absolutely. Thinking about what could possibly be disturbing or disgusting about finding a treatment that finally works has solidified my determination that I will do whatever it takes. No matter the cost, no matter the ridicule, I will do my best for my child. Aicardi Syndrome has already taken too much from her. She deserves to have parents who will do whatever they can to give her the best life possible.

2. Thank you for teaching me to stop the never-ending judgment reel in my mind. Each one of us has a constant line of judgments running in our minds. Well, I assume you do too. She shouldn’t be wearing that. How can they afford that car? She is rude. He is driving too slow. Their kids are out of control. That guy talks too much. It is always running…unless we consciously stop it. We have to renew our own minds. Our minds will go there on autopilot unless we decide not to let them. Because I was so mad at you for assuming you know what we have been through, I realized that I too have no way to know the road each of these people has trudged to get this point, on this day, where I am judging them. I will renew my mind when that judgment reel starts playing and will choose to focus on the things in my own life that need refining before determining things that need to change in others, especially those about which I do not know the full story. Which is probably most things.

3. Thank you for reminding me to be careful with my words. Words have power. They can either breathe life into another. Or they can suck it out. There are very few neutral words. I had several days taken from me because of your anonymous words. You probably have not thought of me again. Words have power. I want to use them carefully.

4. Thank you for teaching me the importance of saying “me too” as often as I can. When I read your email, my first ache what that of feeling alone. You may not know this. Parenting a very rare child can be lonely and isolating. In this case, all I could hear was…yep, you are the only one dealing with this. And everyone thinks you are disturbing and disgusting. She is just the only one willing to say it. Have you been there? I really needed to hear someone say, as author Brene Brown says, “the two most powerful words when we are in struggle, 'me too.'” Showing up, coming alongside and just saying “me too” can heal lots of wounds.

So to you, the author of the email, I say thanks. Thank you for making me stronger. Thank you for making me kinder, I hope. Thank you for making me gentler, I pray. Thank you for making me more aware of the need for “me too.”

You probably thought I’d fire back. But the beauty of raising a medically fragile child is…you get strong and with that, you learn to endure pain and keep moving forward. Onward, with more grace and love, hopefully for us all.

Wednesday, April 27, 2016

Love and Communion

I knew there was something wrong. She hasn’t smiled much over the last 4 days. Her seizures have been weird. She can’t tell me what’s going on because she doesn’t have the words. It is the worst part of raising a non-verbal child. The worst by far. But I knew something was wrong...because I know her. I have spent so many minutes with her that I have memorized every facial expression, every movement. When those expressions change, I know I need to start investigating.

I took her into see the doctor yesterday. She diagnosed Reese with an ear infection and a UTI. Oh man, I felt horrible. Mother of the Year, that's me.

My nurse friend told me that it was so wonderful that I knew to take her in even though she didn’t have words to tell me that something hurt. No fever, no crying. Just a different Reese from the one I know. I have never considered this to be anything special.

As she woke up this morning with a smile, after a night of letting the antibiotic do its work, I talked to God about how much it hurts to see her in pain. And to not be able to ask her where it hurts and actually get a response.

I remembered my friend’s words about how great it is that I know her so well.

And God reminded me that that is just like my relationship with Him.

The fullness of life flows from love and communion with God.
Love.
Time.
Wanting to know everything about Him.
Not because I have to but because I want to.

I know everything about Reese because I want to. Because I love her so much.

When I am in communion with Jesus in this same way, it is then that the light of life is mine. It is then that anything that is “off” in me is glaringly obvious to me. It is then that His goodness can flow out of me to bless other people. Because I know goodness and purity and truth. And I have the source of wisdom and life as my closest friend.

Love and Communion with God--that's what I desire, what I need. Reese's lesson for me today.

Tuesday, April 12, 2016

Wonderful People

Have you ever had someone say something to you that hit the bottom of your heart and sent a ping, ringing around in there for a few days, in a good way? I know you have. Words have such unexpected power. And positive words have the ability to send us skipping through the whole week, even. Negative words…well, you know. But those positive affirmations. Those are the ones.

The nursing supervisor visits me every few months to check up on my daughter. She examines Reese and asks if we are happy with the nurses who take care of our medically fragile child. It’s usually just one more appointment, kind of a nuisance really. But this last time, I scheduled her visit while two other therapists would be in the home. It’s called consolidation.

The vision therapist bounded through the door with his booming voice and regular joy. Reese didn’t take her eyes off of him the whole time. Ironic, isn’t it? She qualifies for vision therapy because she is “blind", but she loves looking at him. And she smiles because of him.

When he left, the supervisor looked at me and said, “Wow, he’s amazing.“

"Yes," I responded, "she loves him."

She followed with, “Reese attracts such genuine, wonderful people. She is surrounded by the best people.”

That felt like a big, warm hug. You know the kind? Like when you hear the words you needed to hear but didn’t know you needed to hear? Have you been there? Proverbs 25:11 says, "A word spoken at the right time is like golden apples on a silver tray." Yep.

She continued, “Most of my patients do. They have such pure spirits. They know who is genuine and they reject those who are not.”

It’s not that we have searched the town for the best people. It’s not that I asked around and hunted down awesome therapists. Reese attracted them with her goodness and purity. I loved that.

I agreed with her and then spent some time thinking about all of the wonderful people in her life. This vision therapist in particular came to mind. When we told him we were starting an alternative therapy that would be expensive, he came the next week with a check for $100 to help us get started. In my mind, it may as well have been $10,000 because on a school district salary…well, it meant so much to me. Pure kindness.

Another one of her therapists told me that Reese has such a “beautiful quality of life.” This is a child with Aicardi Syndrome. She has seizures. She is in a wheelchair. Most of the world looks at her with sad, puppy dog eyes. But this woman…she truly sees the beauty. She sees the colossal love she gives and receives. She sees the explosive smiles. She sees the beauty that others miss. That is healing to my soul.

An old high school friend, who I probably haven’t seen in over 20 years sent us $2500 to go toward her wheelchair van. Have you ever been surprised by love? I have. 80 caring people donated to make that dream a reality. One was a stranger who wrote a check for $15,000. Mouth hanging open.

Some friends of my mom brought over a collection of gifts and gift cards at Christmas, just to bring us joy. Surprise.

Her speech therapist came to see her and brought her son with her during her own spring break. He’s the same age, so they played Shopkins.

Her preschool teacher still comes to visit her.

Her nurse checks in on her on her days off. I know she loves her like she’s her own child.

Her pediatrician calls and emails on the weekends. Because she actually cares.

All the meals, all the emails and texts and facebook messages from people who are drawn to her. That fills me.

She has attracted beautiful people. She has brought goodness into our lives. She has attracted love. And we are the beneficiaries of beauty because she attracts beauty.

It’s kinda like what I always tell my girls: You get what you give. You attract what you are. I think I actually may be right.