A Life in Pictures

This post might seem like it is just a bunch of pictures.  Or, maybe, it is much more.  You can decide.  Last week, we met my oldest daughter, Kaeley at Lake Sacajawea in Longview so she could take some pictures.  It was a perfect day, with just enough sunshine and light combined with the beginning twinges of Fall.  The pictures Kaeley took captured something special. Something I knew about, but sometimes I forget.  I needed to see it, I guess.  My child is a miracle.

Have you ever seen such unreserved joy in your life?  Every single picture depicts a child who has no regrets or reservations.  She is not wondering what other people think, if they like her, or if her hair looks okay.  She doesn't care.

She looks like she is watching something funny, but she's not.  This is her reaction to life itself.  Every. Single. Day.

Angie loves everyone.  Accepts everyone.  Helps them if they need it.  And she finds instant friendship with all that she meets.

If you have been reading the blog, or my Caringbridge page before that, you know the story.  Angie's prognosis was grim before the surgery that saved her life.  We had to fight hard to keep the doctors from giving up on her.  For most, that is old news.  But for me, it is my daily dose of hope.  My child is a walking, talking miracle.  She had half of her brain removed and she is thriving, living beyond our expectations.

Have you had a bad day recently?  You know the one.  The day when it is 9:00 AM and you already feel like crawling back into bed? The day when your alarm didn't go off, the kids were late for school, there is nothing to make for dinner, the school calls about a discipline issue, etc.  You can fill in the blanks, you know what I am talking about.  I have those days, too, but look at this:

How can I possibly stay down when I have a child who cannot contain her joy about simply being alive?  She has no clue that she has cheated death and it doesn't matter.  She must perform most tasks one-handed and she couldn't care less.  Most daily tasks are a struggle.  But she is beside her self with happiness.  Not just in pictures, in real life too.

She is my hero.  My reminder not to take myself too seriously, and to take time to live in the moment.  She is beautiful, inside and out.

I am thankful for the pictures.  Of course, who doesn't love pictures of their kids?  It is more than that, though.  Seeing them all together, I realize that this is really what her life is all about.  Living every moment fully.  She does not pose for the pictures, she is living.  I would never have written this 3 years ago and it feels so good to be watching this precious child shine.

Yesterday was one of those days.  You know the kind.  It was a fighting, naughty children, put-their-pajamas-on-at-6 kind of day.  A countdown-to-bedtime kind of day.  Angie was coming down with a cold and she had no tolerance for any of the rest of us.  Little Princess was determined to push all of Angie's buttons and a few of mine too. I had a new pressure canner and 50 pounds of apples to make into applesauce, so I was impatient with my lovely children and I forgot that colds and bad moods do not put themselves on hold to respect my agenda.

Despite the trying day yesterday, the weekend was filled with special moments and it is one of my favorite weekends in a long time.  On Friday, I met Kaeley at Lake Sacajewea in Longview and she took some spectacular pictures of the girls.  A little preview:

She captured Angie's spunk and energy perfectly.  I have a few others but have to keep them to myself to protect Little Princess' privacy.  We had such a nice evening and we shared dinner with friends afterwards.

On Saturday, Toby and I took the kids to a u-pick farm to pick apples and pears.  It was a rare day with all four of the younger kids together and we had so much fun.  I wish we had done this sooner.  We got a little carried away-thus the 50 pounds of apples.  That was kind of spontaneous and a little ambitious.

 

Angie was not able to walk for long and Josh was kind enough to drive her around the orchard in the wagon with our fruit.  She was happy to shout orders at us from her throne and she didn't seem to mind not being able to pick the fruit as long she had apples to hold on to.

When we were done picking, we drove down the road to the Cooper Mountain Vineyard.  Toby and I had a glass of wine and the kids played, picked grapes, and chased the chickens around the grounds.  It was a beautiful day and I loved that we did not have to hurry to go anywhere.

Many families have days like this often.  For us, though, it was precious and rare.  We do not take the time to simply spend unscheduled time together.  We should, we just don't. It was perfect.  As Rose Kennedy said, "Life is not a matter of milestones, but
of moments."

Back to School

Our kids went back to school this week.  For parents, the return to school causes anxiety for a variety of reasons.  For parents of children with special needs, the anxiety is multiplied and worries about services, behavioral issues, stamina, and teasing by other children are added to the mix. This is not any less true for me. I had so many fears about this week.  The good news is that most of them were not realized and my children and their teachers had no need for them.

Angie is in a full-day Kindergarten program this year.  Last year, as I think I mentioned, she struggled with frustration and behavioral issues throughout the day.  As soon as her teacher and assistant would find a strategy that worked, she would change things up on them.  By the end of the year, I was overwhelmed and wondered, honestly, if she could ever be successful in school.  I could not imagine her enduring an entire day of school when she was struggling to stay in class for 3 hours.

I am not sure where that child went, but she has been replaced by a new, mature, ready-for-school Angie.  Over the summer, Angie grew in so many ways and it was obvious that she had many new skills that would serve her well in school.  Still, I worried.  We planned for Angie to attend every day of school this week, while the other kids had a staggered start schedule.  Our girl knocked it out of the park!  She has not had one time-out all week and she comes home with reports of her day and her new friends.  She amazes me, really.  I have so much hope for this school year-my eyes actually are tearing as I write this.

 

Levi is also repeating the grade he was in last year.  This was not a decision we made lightly.  There were multiple meetings with school staff and all options were considered for him. We do not regret the decision, but as parents it is hard to see your child disappointed and worried.  This summer, we talked with Levi about the benefits of repeating 6th grade and eventually he accepted that it was the best plan for him.  But still.  He was a trooper and on the first day of school he saw that many of his friends were in his class and he likes his new teacher a lot.  I am not going to lie-we have had a really difficult summer with Levi and did not know what to expect because transitions of any kind are hard for him.  The week had some bright spots, though.  Levi has a new Personal Support Worker through Developmental Disability Services and this individual has proven to be an absolute Godsend.  He and Levi have really connected and I think that he will play a key role in Levi's success at school. More about that later.

Josh is a freshman in high school this year.  He has never played football in his life, and yet he decided that he would play this year.  This decision was made one hour before practice started on the first day.  That's my boy:)  Mr. Last-Minute.  If you tell him to be ready to go somewhere at 9AM, he will get out of bed at 8:59.  Really, though, Josh is the kindest, gentlest young man I know and I cannot imagine him slamming his body into someone on purpose.  And besides that, this momma is scared.  He came home last night and reported that the varsity team had 3 injured players during the game last night.  YIKES!!

It is good to be back in a routine.  My kids need that and I can see them relax and thrive when they can predict what will happen next.  Despite the anxiety of the first few days of school-and really the whole summer-I am feeling really hopeful about the year ahead of us.  I have said it before, but it bears repeating: Our schools have an amazing, compassionate, skilled staff and I would not live anywhere else.  We are grateful every day that our children are so well cared-for when we are away from us.

I hope you have all had a great back-to-school experience and are enjoying the sunny weekend.

We are home.  Maybe you didn't know we were gone, but our family has been at the Harris family retreat in Idaho for the past 10 days.  Our time at the cabin was busy and full of people and we have many treasured memories from our time together.  We swam, skied, went wakeboarding (is that a word?)played with babies, ate, drank, sat by the campfire, and laid in the sun.  Most importantly, we did not consult our calendar or attend any appointments.

Angie surprised us by wanting to be in the water every single minute.  After a couple of days I realized why-she was completely free when she was in the water.  Balance and strength ceased to be important and she could move about easily.  Angie "swam", wearing a life jacket, using both arms and she giggled and smiled the entire time.  She repeatedly went under the water and came up smiling and laughing.  I smiled until my face hurt just watching her.  She rode behind the boat on an intertube with the older boys and she squealed with delight.  She was FREE.

We spent our days doing nothing but playing and I could not help thinking how much our lives will change in the next few days-back to school and work and each of us bound by our own schedule.  In a way I am glad that I am able to recognize the importance of our yearly tradition.  I need to remember what a gift these days have been to our family.

Now we are back and we will spend the weekend preparing for the next chapter.  One child is entering high school and playing football for the first time ever.  Another child is seeking answers to ongoing health concerns.  One child is happier than she has ever been and is basking in the reality of what it really means to be content.  And two children, with unique and varying needs, will be repeating the grade level they were in last year.  We do not regret our decisions for either one, and yet there is a grieving process for all of us that comes along with the reality of it.  

I feel that we are ready as we can be to face what is ahead.  Our family has been so blessed to have a huge support system in place.  God has placed people in our lives who love our children and are committed to helping them to succeed.  We do not take them for granted or assume they will be here with us tomorrow.  We are just grateful.  You know who you are.  If you have prayed for us, or said a kind word, you are included.  For today, I have the memories of our yearly retreat to Idaho and the hope that this year will be one of the best ever.

Crossing over

CROSSING OVER

Angie crossed over today from a weekly routine with therapy as its main focus to a routine that will focus on education.  Today, Angie had her last therapy session with her occupational therapist, Laura, whom she has seen weekly for over 3 years.  Angie has been in weekly therapy at Emanuel Hospital for 6 years-since she was 2 months old, so the decision to discontinue her therapy now was not easy.  Ultimately, we decided that a full day of kindergarten plus the trip to Portland and an hour or two of therapy was just going to be too much for her.

Giving this up wasn't easy for me for a few different reasons.  Number One-I am a creature of habit and my week has included a Tuesday trip to Portland for so long I can't remember what I did on Tuesdays before Angie came.  I will especially miss our lunch and shopping trip to New Seasons every week.  Number Two-I feel that if I discontinue Angie's therapy, I may not be doing all that I can to support her development and help her reach her potential.  Otherwise known as Mommy Guilt.  You know it well, I'll bet, if you are a mom.  Number Three-I now have to trust school-based service providers to identify Angie's needs and share them with me.  I have to give up control and that is not easy.

What to do?  The decision is made and now we will move on.  I have spent most of the summer questioning my decisions-this one and the decision to have Angie repeat another year of kindergarten.  I will never know what the outcome of either decision would have been had Toby and I chosen differently, but I do know this:

Angie is going to ROCK kindergarten this year.  Our girl is so ready!  She can spell and write her name (with a tiny bit of help), identify letters and letter sounds, identify all colors correctly, and she is learning every single day.  Her development is not that far off from that of other children entering kindergarten and I cannot wait to see her blossom this year.  She will have the tireless Ms. Stafford cheering her on and new friends by her side.  I cannot wait.

Angie will miss Laura, and her speech therapist, Chris, who left for an awesome new job last week.  She will return to the hospital next summer for a burst of therapy and I am already anxious for her to show Laura what she has learned.  Change is good, I know that.  We are heading to Idaho soon.  It is my quiet place, where I can reset the tapes playing in my head and prepare for the year to come.  It will be perfect and then, LOOK OUT KINDERGARTEN, HERE SHE COMES!

Memories

The other day, as I was driving to Portland, I pulled out a long-forgotten CD from my console as I was looking for some new music.  The CD was labeled "Momma's Mix" and Kirsten made it for me during one of my lowest times since Angie came to us.  I am still touched by the compassion of my then-18 year-old daughter.  Each song on the CD has a message of hope and perseverance through trials and as I listened to it now, I was transported back in time.  The memories of that time came to me all day long as I went about my business.  Actually, I have been thinking about it ever since.

When Angie was 18 months old, her doctor determined that Angie needed surgery to remove her tonsils and adenoids to treat sleep apnea.  She had begun having seizures 4 months earlier, so we expected the procedure to be comparatively unconcerning.  She would stay one night because of her age and we would take her home the next morning. We had no idea.....

During the surgery, Angie had begun having respiratory problems that required doctors to perform rescue measures.  She struggled to keep her oxygen levels up even with the supplemental oxygen.  As I sat in the waiting room, the 45 minutes that I was told the surgery would last stretched to over 2 hours.  Finally the nurse came to let me know what had happened.  By then, Angie was stable and we were taken to her room.

The next morning, Angie was still unable to be weaned from the oxygen and she had developed a nasty cough.  At noon, Toby went downstairs to get some lunch for us.  Five minutes later, Angie turned blue and her oxygen levels plummeted, sending the monitors into an uproar.  Nurses turned up the oxygen and her levels continued to fall.  At this point, I was asked to step back and a Rapid Response Team was called.  She was crashing.  I can't remember exactly what happened next, but we ended up in the Pediatric ICU unit (PICU) where Angie would stay for 26 days.  She had somehow aspirated fluid into her lungs during the surgery and she had severe pneumonia in both lungs.

Each day in the PICU, doctors visited and updated us on Angie's condition and the plan for the day.  They tried new medications and oxygen settings. Angie was in a world far away where we could not reach her, not regaining consciousness for over 2 weeks.  Each night, I slept in a common sleeping room with other worried parents like myself as I waited for good news.  And I prayed.

One day in particular stands out to me, about 10 days after Angie became sick.  Jordan was playing high school basketball that year and she had a game at Catlin Gable in Beaverton.  We talked to the nurse that day and she encouraged us to go to the game and promised to call if anything changed.  We were stuck in traffic on our way back to the hospital when she called.  She told us that Angie's reserves were getting low (she had little fight left) and that we must come quickly.  The doctors had decided to intubate Angie and place her on a ventilator and they wanted us to be there.  There is no positive spin here.  They were unsure she would make it.  On this day, Toby mistakenly sent me a text message meant for a friend that said, "It is really looking bad and I don't think Kara knows".  But I knew.

I have to keep these memories and bring them out sometimes, as difficult as they are.  They are the thoughts that bring me hope when I am discouraged.  The memories of this time remind me how truly strong our family is.  The memories tell me that God can and does perform miraculous healing-even more than once per person:). The memories keep me fighting to find new and better treatments for my children, and for other people's children.  The memories tell our family story.

Angie came home 26 days after surgery to remove her tonsils and adenoids.  During that time, her surgeon visited every day, even his day off, and apologized to us kindly every day even though he was not at fault.  Joshua celebrated his 9th birthday with a party in the hospital atrium.  Toby and I took turns sleeping at the hospital and caring for the kids at home.  Angie recovered from pneumonia, only to then develop a blood infection from her central line. She became physically dependent on the narcotics that controlled her pain and had to complete a medically managed withdrawal process before she could be discharged.

On that 26th day, I could not wait for our family to be together again.  Not one of us was unchanged by Angie's illness and the kids still talk about it occasionally.  I am sorry that Angie was sick, but I am not sorry for what I have learned.  My faith was strengthened and my compassion for parents with sick kids is heightened.  I have kept my CD in the player for now, but I am ready to put the memories away until I need them again.

HOME!!!

Hope for the future

Yesterday, I went to the nail salon for a pedicure.  Not big news, unless you have seen my feet in sandals lately.  I am truly sorry if they have offended you-my last pedicure was over 4 months ago.  So, yesterday I finally went to take care of my ugly feet.

I like to watch people while I am getting my nails done. Admit it, you do too.  You can learn a lot from what you see and hear in a nail salon. Tragedies and dramas galore!  If you do not know this personally, I definitely recommend the experience.  It's not spying because you can't help hearing the stories, right?  What I learned yesterday blew my mind away.  It was a perfectly-timed infusion of hope for my soul.  Here is what happened:

As I sat in the massage chair, holding on tight so I would not be thrown out by the sheer force of the massage-really-I watched three girls in their late teen/early twenties come in and begin to choose their nail polish.  One of them was seated in the massage chair next to mine and soon I heard her calling out to the others, "I want my toes sparkly!", "Please tell him, I don't think he understands!" ,"I am sorry, I don't mean to bother you, but I am worried.", "I am sorry, I am sorry, I am sorry."  Her slow, halting speech and her mannerisms told me that this sweet girl was developmentally disabled.  The other two young women were her caregivers.  They may or may not have been related to the girl, but they were clearly in charge of her care.

Each time the sweet girl called out, the caregivers patiently answered her and reassured her that her nails would be as beautiful as she imagined. Several times they got up from their manicures and came over to comfort her to make sure she was understood by the nail technician.  They showed no impatience or frustration whatsoever. The caregivers clearly loved this precious girl.  Then, a pretty young employee from the salon came over and told the girl how she loved the polish that she had chosen.  The teen sat on a stool beside the girl and visited with her for over 5 minutes.  Several other employees followed her lead and came over to reassure the anxious girl that her nails would be perfect.  The girl beamed and clearly felt special and, finally, understood.

I am pretty sure that I had a goofy smile on my face as I watched.  My heart was so full.  Seeing the love and acceptance offered to this young girl gave me a new hope for my children's future.  There are people in this world who see past the limitations and differences to the true goodness inside.  I wish I could could tell the girl's mom what I saw, how I watched people loving her daughter.  I think her heart would be full too.

If we all extended this type of love and acceptance, what a different world we would have.  It is hard.  Mental illness, homelessness, drug abuse, hurting people.  Children and adults with disabilities.  They are all someone's child.  Their mothers rocked them, loved them, and had hope for their future that was dashed away somehow.  Extending ourselves and trying to understand is much easier when people are just like us.  What I saw yesterday truly hit me hard.  I believe I was in that place at that time for a reason and I am grateful.