In my heart

For the past few weeks, Angie has been telling me, "Mommy, Jesus is in my heart."  The first time I heard it, I was shocked.  It was as if she had said, "Mommy, I am training for a marathon".  Not even on my radar.  Don't get me wrong, we are regular church attenders and have been active in our church for over 20 years.  We openly express our faith to our children.  Attending the children's program at our church is the highlight of Angie's week.  She loves to be included and to learn with the other kids and the teachers always comment that she is extremely polite and well-behaved (yeah!).  She hates to miss a single session.  But really, I completely underestimated her.  I did not realize she was able to embrace the message.  I am feeling a little ashamed of myself.  Angie has listened and has taken in the truth-Jesus loves her and he lives in her heart.  What a comfort that is to me.  To know that my girl understands Jesus' love and how precious she is to Him.  It is a gift.  A promise that cannot be broken.  A love for her entire lifetime.

Today, she surprised me again.  We were driving to her therapy appointment and she, predictably, kept up a constant stream of chatter.  Now, I love to visit with her but sometimes I kind of tune out as a form of self-preservation. And today I did that-I had to.   So, I came back to the conversation just in time to hear her say, "Mommy, I grew in your tummy."  Uh-oh.  I was stunned to silence. I guess she must have heard this from one of her school friends because it is not a theme she has heard at home. Then I remembered a book that I read to the boys when they were little and I said, "No, sweetie, actually you grew in my heart".  She loved that.  "Like Jesus?"she asked.  "Exactly. " A promise that cannot be broken.  A love for her entire lifetime.

The heart has been represented in a variety of ways over the years.  The heart is referenced when a young girl is lovesick over a middle-school crush.  Its image decorates our valentines.  As we get older, our blood pressure and cholesterol levels tell us about the condition of our physical heart.  The heart is the topic of romance novels and teen fiction.  But what do we really mean when we say someone is "in our heart"?  Our heart is just a muscle.

I believe what we are really referring to is our soul.  Some relationships touch us deep in our soul.  A bond based not on emotion but on commitment and loyalty.  Respect and dedication.  If you have experienced this bond, you are blessed.  Relationships that take root in the soul are the ones that give us hope on the dark days.  Listen when we need to be heard.  And love us, no matter what.  They stand by us when they don't agree with our choices and they stand up for us when they don't have to.  Jesus does it perfectly, but we can try it too. A promise that cannot be broken.  A love for an entire lifetime.

Angie is an example of unconditional love.  She will boldly tell you otherwise when she is temporarily upset but she loves with all of her being.  Not afraid to talk to other children in the hospital waiting room or to express her affection for her therapists, she is all in.  Holding nothing back.  She loves her teacher, her aide, her home caregiver, her siblings, her parents, her caseworker, her therapists, her school friends, family friends, her brothers' and sisters' friends, pets, and neighbors.  Her love knows no boundaries.  She loves loud and proud.  Sometimes I worry about that, but should I?  After all, who doesn't need one more person to love them?  A promise that cannot be broken.  A love for an entire lifetime.

Sharing Hope

Today was my favorite kind of day.  I got to share Angie's story with a parent who needs to know that there is hope. I love these days.  You see, I firmly believe that this is the purpose for our family's journey.....to share the miracle.  To use it for the good of others.

I hope I did that today.  I saw before me a mom with a "broken" baby, just like the one I held over 5 years ago.  Tears in her eyes and so much love evident on her face.   A baby with a grim diagnosis, but so much potential.  And so smart.  A sweet, precious baby who just happens to have a brain that needs a little repair.  A baby with a mom who is overwhelmed and tired and needs a little hope.

I hope I helped her find it.  I told her that Angie was so much like her precious baby.  Sleeping much of the day, making very slow progress compared to other babies.  Eating too little and choking on the formula that was supposed to make her grow.  Frequent hospital stays.  Struggling to excel when her brain was working against her.  Not learning to walk until almost her second birthday.  And then, I told her about our miracle.  About the amazing capability of the brain to repair and relearn.  To compensate for its limitations and to prosper despite the challenges.  I told her about the hope and the joy of raising a precious children like ours.

I showed her a video of Miss Angie sledding in our driveway this winter.  In the video, Angie is laughing a huge belly laugh as she slides down the hill-I could watch it over and over.  I show her a picture from just a couple of days ago of my sweet girl beaming from ear to ear.  I tell her about my love and my pride as I watch her shine.

And she smiled.  I could see a small glimmer of encouragement in her eyes.  She asked some questions and I could see her demeanor change.  Angie has that effect on people.  Make no mistake-I had nothing to do with this.  I am just delivering the message.  Like the postman.  I ask myself constantly why God chose me for this child and why did He honor me with the task of spreading her story?  I never have an answer.  But I am honored, as I have mentioned before.  What a blessing to watch her story change lives and bring hope to the weary.

It was a good day.  One of my favorites and now I am excited to watch this family as they adjust to the notion of hope.  And experience their own special miracle.

Happy Birthday, Levi

 Happy Birthday, Levi!

  Levi is 12 years old today.  Every year on his birthday, I think back to the day I met him.  Most parents do this, I imagine.  The memories of our children's beginnings are so precious.  For me, it started with a phone call from a caseworker to inform me of Levi's birth.  We knew he was coming, but the circumstances of his birth and his placement afterwards were in the hands of the state of Washington, where he was born.  We were unsure if the state would choose to place him in our home until the very last minute.

Levi came home to us on March 16th, 2002.  He was tiny and frail, born one month early.  There was a snow and ice storm that day and the conditions were treacherous as the caseworker drove to Seattle to pick him up from the hospital.  When we met him, we were flooded with emotion.  This was our precious Joshua's brother.  We were thrilled to have the boys together, but also apprehensive about caring for a child whose needs were significant and unpredictable.  We had never cared for such a fragile child before.  And we loved him.  Instantly.

 

  What an adventure the past twelve years have been.  We couldn't have imagined the highs and lows we would experience parenting our Levi.  I became interested in early intervention as I watched Levi thrive because of the therapies he received and over the years it has grown into my passion and my career.  We have never regretted our decision to keep these brothers together or to grow our family through adoption.

I admire this boy for his spunk and his perseverance through challenges.  Everyday life does not come easily for him, but he finds joy in simple pleasures and he loves with a huge heart.  Levi has more empathy and compassion than most 12 year-olds and he makes me proud to be his mother.  Time after time I have watched him help another child, offer his seat to an adult, reach out to someone having a bad day, or compliment a friend on their abilities.  His brilliant smile brightens my day and reminds me why every single day of the past twelve years has been a journey worth taking.  Happy Birthday, my love!

My heart is heavy today after learning that another angel with Sturge-Weber syndrome has left the Earth.  Colton was only 3 years old.  I did not know him but I do know that his family, like mine, spent their days fighting for life to win over death and looking for the treatment that would stop this horrible disease.  Without meeting Colton or his family, I know they are devastated by this loss and cannot imagine life going on without him.  I know their monster by name.

My mind gets carried away when I hear stories like Colton's.  Selfishly, I am thankful that it was not my child.  But that thought is quickly followed by the horror of imagining that it WAS my precious Angie.  I almost stop breathing at the thought.  NO!!!!  I want to know the details of his illness (but I am glad I don't) so I can compare them to ours and tell myself that his situation was far worse than Angie's is.  I want to hear that he could not achieve seizure control, not that his seizures were well controlled and he passed away during a relapse. I remember again how close we came to losing our precious child, on more than one occasion.  I can make myself crazy with all of these thoughts.  I just might yet.

Each time I hear of a child with Sturge-Weber syndrome passing away, which is far too often, I hold Angie a little closer.  Sometimes I creep into her room and climb in her bed after she is asleep.  I smother her with my presence and inhale the wonderful "miracleness" that surrounds her. Today is no different, and in many ways this is my cure.  I need a physical reminder that my child is still safe from the monster, at least for now.  It is my only means of survival when I am reminded of the precarious nature of living with Sturge-Weber syndrome. And it works.

On a positive note, Angie had an amazing day at therapy today.  She was right on during both speech and occupational therapy.  Her focus and stamina was the best I have ever seen it and both therapists noticed it too.  Angie's ability to learn new skills and information has increased so much and her perseverance makes me one proud mama. We went outside to enjoy the sunshine after therapy and the world seemed a little bit brighter right then.  It is funny what a little sunshine can do to lift your spirits, isn't it?

I hope that Colton's family saw the sun today, too.  I will be praying for them this week as they try to make sense of their new reality.  Please keep them in mind and hold your loved ones close tonight.  Life is fragile and fleeting and not to be taken for granted.

Words have incredible power over us, don't they?  Have you ever thought about it?  If you think back, you can probably easily remember words that someone said to you years ago.  For many, the remembered words will be hurtful words.  Why do hurtful words seem to stay with us the longest?  But positive words do too.  For some, maybe the remembered words came from a parent.  Or a friend? A teacher? Powerful, right?

The words we hear today are powerful too.  They shape our thoughts and feelings in a way we often do not realize.  They can build us up or bring us down-instantly.  Every day we hear and process words in an individual way and they change our lives.  Personally, some  of my most remembered words are, "he will probably walk but may not talk", "next seizure.........", "cerebral palsy", "sturge-weber syndrome", "devastating seizure", "DNR order", "intellectual disability", and "poor prognosis".  I will always remember where I was and even the clothes I was wearing when I heard the words.

Those words do not define me, though.  And they don't define my children.  As powerful as the words were, and still are, I know better.  I know the amazing power of a child and his or her will to achieve.   I know medical miracles and God's grace upon my family.  I know that predictions can never limit or encompass a child's spirit.  I know better.

Now that I know the power of words, though, I think carefully before speaking.  I make mistakes still, but I am a better listener and use fewer words.  I try to consider the impact on my listener.  If I have hurt others with my words, I am sincerely regretful.

This week, I was impacted by words in a new, humbling, and honoring manner.  Yesterday, I received a card in the mail addressed to myself and Angie.  The card was homemade by the second-year medical students that we visited at OHSU last Thursday.  It featured Hello Kitty (Angie's favorite) as a doctor on the front and included personal messages from each student inside.  I was completely overwhelmed.  The students' messages touched my heart deeply.  As I read, I thought of how humbling it was that God chose me to tell Angie's story.  It was not me that the students were responding to.  I was just the messenger.  They were responding to God's amazing hand in Angie's life and her resilience and grace.  And her presence, which speaks louder than words.

I want to share a few of the messages so you can see what I mean: ""Your story will influence my career and my heart for a long time", ""Your story makes a huge impact on our education", "You are a smart and dedicated girl and a great example for us", ""You inspire us with your compassion and strength", "It's not every day I leave class feeling inspired, but yesterday I felt that way".  See what I mean?  So powerful.  Angie is changing lives.  These are the doctors that will treat us and our loved ones in the future.  Wow!

The card made me think about how I can use words to encourage others in the way that this card encouraged me.  It is easy, really, if I am intentional about it.  You can do it too.  What a big difference a few words can make.