The Last Day

Today is the last day of 2013.  The end of the year and a time to reflect on the past year and (maybe) make resolutions about the year ahead.  I have decided that I will not be making any New Year's resolutions this year.  Why?  I guess I feel that making resolutions causes us to focus on our weaknesses and failures as reasons to change instead of focusing on the courage and strength that we draw from to put one foot in front of the other every single day.  If I am better and I do better today than yesterday I am making progress and I will be able to look back on my year with satisfaction.  That is enough to ask of myself in 2014.

That said, I have been reflecting on the past year and all that has transpired.  There have been milestones, victories and disappointments, to be sure.  In the past year, our family has had to consider an alternate placement for one of our children due to severe behavioral concerns.  We examined ourselves and our resources and eventually made a decision that we would parent the child through the challenges and were unwilling to retreat from the commitment we made to our child in the beginning.  We are the parents and we know and love our children like no on else is able to.  Tough stuff.

We helped Angie complete the transition to kindergarten and the process provided a major reality check for me.  She did not sail into kindergarten as I had hoped.  Instead, she struggled and faltered and provided regular opportunities for me to practice humility.  I was required to look at her needs and her challenges in a new light and to realize that the measuring stick of the medical community, which finds her to exceed expectations, is not the same tool used by the education system.  The adjustment has been painful and I have grieved the experiences I wanted for her as I have replaced my expectations with new hopes and dreams.  I am sad and disappointed in myself because just a few years ago my only prayer was for God to let Angie live and here I am today, greedy for way more than she is able to achieve.  This year I will do better.

Our family has had broken relationships and disappointments within.  All families have these fault lines and gaps in relationships and this year we faced them head on.  The end of the year has brought our family healing and hope for the future.  We have courageously come together and silently agreed to do better.  My efforts to do better and be better each day will be especially focused on my family and what it needs to remain strong and unified.  Everyday life is hard enough without pain and separation within the family.

Although we have have struggled this year, I find myself feeling a sense of gratitude and resolve as I move into the next year.  We have overcome every obstacle.  I have a job and family that I love and a huge "village" of people to hold us up when the going gets rough

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I welcome 2014 and all it will bring.  Each day, an opportunity to start over and do better than the day before.

Christmas Magic

Have you seen the magic of Christmas this year?  It is all around us, just waiting to be found.  We just returned from a 4-day family trip to Cannon Beach and I saw it there.  What a rare blessing to have all six of our children together in one place.  My parents and my brother, who rarely travel due to their age and health issues, were able to spend a night with us at the home we rented and their faces reflected how much they needed the Christmas magic that was there. The everyday worries were replaced by magic of being in the presence of the ones who know you best, share your history and walk beside you in the everyday journey. We walked on the beach, shopped, played games together, and of course, ate sinfully delicious food.

The magic is everywhere if you choose to see it.  We learned that our children met secretly last weekend for a photo session so they could present the pictures as gift to us.  When the "big girls" invited Josh, Levi and Angie for a sleepover, we thought they just wanted to spend time together:)  Kaeley, who is an amazing photographer, took the pictures and even managed to get in them herself.  If you are a parent of children, who all grow up way too fast, you know how precious this gift of Christmas magic is to us.  Priceless.  Here are a few of my favorites:

The Christmas magic is everywhere.  It is in the people around us.  This week, our school had a number of cancellations due to the weather.  Angie's kindergarten class missed their field trip to see Santa at the Castle and the disappointment was felt all over town.  Leave it to Ms. Stafford to make sure the kids did not miss their date with Santa.  The class was supposed to make-up the visit on Friday and (wouldn't you know?) school was cancelled again.  Ms. Stafford worked her magic and we received a phone call that the visit was on if parents could get their kids to the Castle.  Could you ever feel the magic in that room!  Angie was thrilled to see her "school friends" as she calls them and to tell Santa what she would like for Christmas.  She won the Bingo game, making the day complete.  Christmas magic is alive-you just have to look for it.

I have not forgotten the real reason to celebrate the Christmas season.  Jesus came to save us as a tiny infant.  He humbled Himself so we could see and believe.  The miracle of His birth is beyond my human understanding but I trust His perfect plan without question.  I believe the Christmas magic that is all around is a sign of His perfect love for us.  An opportunity to set aside our everyday worries for a moment and focus on all that is good and right.  Look around you and see if you agree.

 I am ready to share more about our visit to the epilepsy clinic last week.  I have something really big to share.  I feel like I should whisper when I say it, even though it is not a secret..........We are beginning to eliminate Angie's last seizure medication.  Verrrrrrry slowly.

I have decidedly mixed feelings about having our girl without any seizure protection at all, but I agree with the doctors that it is time to try.  We will taper her dosage down over the next 2 months and if there is any sign of seizures, we will change the plan.  Angie has always lead the way in the past and I have no doubt that she will show us what she needs this time too.

Seizure medications have side effects and they can be really detrimental.  This particular drug causes agitation and cognitive delays. Who needs that?  There can be long-term effects on body systems, also, and Angie has had a boatload of drugs in her system over the past 5 years.  Why not try?

I have been asked if we will have Angie's g-tube removed if she is able to stop taking seizure medication.  The honest answer is, I don't know.  The medications, the g-tube, the special bed, the human supports we have in place, the many specialists and therapists- these all provide security and each layer that is removed leaves us a little more vulnerable to the "what if?".  To be sure, I am living less in the "what if" than I did in the past.  The days of keeping an overnight bag packed and a full tank of gas in anticipation of a middle-of-the night trip to the hospital are long gone.  The mind does not forget, though.  Sturge-Weber syndrome is a progressive disorder.  We have experienced a reprieve from the very worst outcome so far, but we are aware of the continuing risks.

What to do?  For now, we will just bask in the everyday wonder of this child and her miracle.  We don't have any decisions to make today that cannot wait for tomorrow. We have six healthy children and who could ask for more?  Our family is renting a home at the coast this weekend and all six of our children will be under the same roof overnight for the first time in years.  What more could a person ask for? We are elated and decisions and worries can wait.

I am going to end this most serious post with a few pictures of our adorable little elf from the Kindergarten Christmas program last week....

Throwing it into the pile

Today had a somewhat surreal feel for me.  It felt like God had a lesson for me everywhere I turned.  I left the house this morning already feeling emotional about Angie's appointment at the OHSU Epilepsy Clinic.  We first visited the clinic in December 2010 after being told that Angie was not a candidate for surgery to treat her seizures and that all medical options to address the life-threatening seizures had been exhausted.  That day we found hope and every trip back to the clinic reminds me of the long journey to surgery 6 months later.

Angie and I had some time before her appointment so I decided to stop at New Seasons to do some shopping and have lunch.  Shopping completed, we sat down with our food and I noticed a tall young adult bustling about the room.  He clearly had a developmental delay or disorder and I watched him work in awe.  He talked to himself and made repetitive hand motions, but he was working hard.  My kids can have jobs when they grow up!  Yes! I got up to get water for Angie and I struggled with the water dispenser.  Before I knew what was happening, the young man ripped the glasses from my hand wordlessly and filled them quickly and expertly.  I turned to thank him and he was glowing, so thrilled to be able to help, but he walked away as if not knowing how to respond to my thanks.  I think I love him.  What courage.  What strength to use his skills productively.  He brightened the room and it seemed as if the guests were happier for his presence. I'll bet his mom thinks he is a miracle.

We arrived at the hospital a little early for the appointment and as we waited I observed the families around me.  I always expect to see sick kids when visiting a children's hospital and sometimes the children are desperately ill.  Today, the epilepsy team was in a different setting than usual, the Child Development and Rehab department.  The children in this waiting area were children with "Superpowers" as my blogger friend Chrissy calls children who grow or learn differently.  Each child's Superpowers were different but all were clearly challenging.  Several were non-verbal.  I watched parents sigh, yell, roll their eyes, look to the other parent to chase the child this time, and appear completely overwhelmed. Weary. Sad. Afraid.  I wanted to help them, every single one.  But I felt completely powerless.  Their journey is theirs alone. At one point, I had to restrain myself from running after a mom who looked especially upset and exhausted.  I was reminded of the Pinterest pin below:

Think about it. Wouldn't you?  After today I know it is true.  At the same time as I was feeling helpless and sad watching the other families I was overwhelmed with gratitude for the beautiful life that God has given me.  I needed this lesson today and God, as always, delivered it right on time.  My children may have Superpowers, but they can walk, talk, laugh, and express their love in multiple ways every day.  I have been given so much.

Our time with the doctors was like a reunion.  Angie told them all about "Kindergarten school" and showed off some of her new skills.  We discussed some changes to her treatment, which is something I am going to save for another post.  It is a lot to absorb.  Dr. Wray asked if we would come to help him teach his medical students about hemispherectomy and Sturge-Weber syndrome again like we did last year.  I can't believe it has been a year!  Dr. Wray said that his students told him that meeting Angie and hearing her story was their favorite part of the class because it made the information real and relevant.  Go Angie!

As we pulled into the driveway at 4:15 this afternoon, Angie asked, "Is it jammie time?".  I wish. I guess we both experienced the day similarly.  I feel like I have traveled a thousand miles today and have arrived at my destination an older, wiser version of me.

So, I challenge you to throw your problems into the pile tonight.  Don't leave them too long before you grab them back (you wouldn't want someone else to snatch them) and look at them closely.  There are lessons and blessings to be seen in each one.  Miracle and wonders all around us.  I'll bet you will keep yours too:)

"Before" and "After"

I want to tell you about two wonderful people who have come into our lives and I have sat here for about 30 minutes trying to find the words. I want to make sure I am able to convey how much these two mean to our family and how our lives are better for knowing them.  You know how an event occurs and you start to define your life by "before" and "after"?  This is one of those times.

We met Heather when Jordan was a helper in her kindergarten classroom two years ago.  We only knew her peripherally then and had no idea how she would impact our lives.  We are thankful that Heather is now Angie's kindergarten teacher.  Jeff became our family caregiver in April of this year and that is when our "after" began.  We were struggling to meet the needs of our family and to fulfill all of our other responsibilities and we needed help!

These two have a heart for children and they have dedicated their lives to helping other people's children to learn and grow.  They spend their free time thinking of ways to benefit the children in their lives and I am grateful for their tireless efforts.  As I have mentioned, our children have some challenging behaviors and that is kind of an understatement.  Jeff and Heather have stood by us non-judgmentally and have worked hard to help us address the behaviors and to come up with strategies to minimize the behavior.  I am sure they sometimes go home at night and wonder what kind of crazy family they have become involved with, but they never let on to us.

Yesterday was a snow day in Clatskanie and Jeff and Heather braved the weather to come over so I could go to work.  Nothing warms a parent's heart more than seeing your child's joy in the presence of those you have trusted to care for her.  Angie is elated to spend time with Jeff and "Ms. Stafford" and I never need to worry while I am away.  That is a priceless gift.  Josh and Levi, although they require much less supervision than Angie, also look forward to spending time with Jeff and Heather and have had memorable experiences on their road trips together.

They made snow angels yesterday and I love the look of joy on Angie's face in this picture:

I have been thinking a lot about family and what it means.  The holidays, I guess.  Growing up, family always meant my parents and brother and the large extended family that lived in Astoria.  I grew up with grandparents, aunts, uncles, and cousins close by and I loved being able to spend time with them.  Today, I see family much differently.  I still love our time with our families.  Toby and his three brothers are hilarious when they get together and I love my sisters-in-law dearly. My mother and father-in-law are like parents to me.  But family is so much more.  Family is the people who surround you when times are tough, not just in times of celebration.  Family is the people who step in to give you a break when you are exhausted.  And call you on the carpet when you claim to be "fine" when you clearly are not.  They are your supporters, your listening ear, and your partners in doing the hard stuff that comes along in this crazy life.

Toby and I are grateful to have Jeff and Heather as family and we are thankful that God placed them in our lives at His perfect time.  Just when He knew we needed them.

Recovery mode

My plan to get the kids back on track is moving right along.  A few bumps here and there but a relative calm has settled over the house and I think we will soon recover from the nasty holiday weekend.  Whew!

Angie had an occupational therapy evaluation yesterday in preparation for her to start attending weekly therapy visits.  The evaluator, Laura, is Angie's long-time occupational therapist and Angie was thrilled to see her again.  We have been on a break since August when Angie's insurance coverage for therapy ran out for the year.  That is another story-my constant frustration with insurance coverage.  Another time.  I am working on using my Nice Words.

Testing days are hard for me as they are for most parents.  I see parents come to Progress Center every day with the same deer-in-the-headlights, "please tell me my child is fine" look that I must have had. Even after all these years I know I do.  I love those parents.  I want to take them home and take care of them.  To tell them that even if their child is not "fine", he or she is PERFECT and will teach them what is really important in this life.  And bring them unimaginable joy.

Angie performed well on the evaluation, even surprising me with some of her skills.  For example, her ability to hold fabric under her chin and fasten and unfasten the buttons in it with one hand.  Who knew?  Despite my pride in her adaptive abilities, I know that her scores were frighteningly low.  Laura, bless her heart, did not share the actual numbers with me.  We must have had a silent understanding that we both knew what we knew and it would not define the Angie that we both love.

After the testing, Angie and Laura got to play:

As we walked out of the hospital, Angie said to me, "Mom, I love Laura and Laura loves Angie." So, true, my love.  I am so glad she knows and feels the love.

Today, I attended a Citizen Review Board hearing regarding Angie's DHS case.  The CRB reviews each case every 6 months and serves as oversight to make sure DHS is complying with state child welfare laws.  I did not expect any surprises and there really weren't any.  The same CRB has watched Angie grow and thrive over the years and they are always overwhelmed by her progress.  It is a good reminder to me that although the day-to-day challenges can be disheartening, the big picture is that this child is a miracle!  Every. Single. Day.  She is alive and she is thriving.  Boom!

If you are still reading my blog, thank you.  This blog provides an outlet for my thoughts and feelings as my family continues on this journey.  Once I write them here, I try to consider them "given away" and not to dwell on them.  If you are on the receiving end, that is a gift to me and goes a long way towards helping me stay sane.  Thank you, my friends, for your important role in the journey.

The Calm After the Storm

I have a confession to make.......I couldn't wait to return to work this morning after a week-long break for Thanksgiving.  It felt like a safe haven after a long war-or something like that.

Our children need structure and consistency like they need food and water.  Thanksgiving, Black Friday, a weekend of late nights, and the excitement of decorating the home for Christmas have temporarily wiped out all forms of structure and consistency we had developed in our home.  Fear not, though, this mama is taking it back.  We are going to be back on track this week OR ELSE!  And the "or else" is that I will take a one-way trip to the crazy house, as I often joke with kids I am going to do.

Really, though, we endured multiple meltdowns, sibling battles, curse words, flying objects, naptime rebellion, and worse.  Every day for the past 5 days.  Enough is enough.  I try to stay positive most days but I am tired.

Ranting aside, we did enjoy working together yesterday to get the Christmas decorations out and getting the house ready for the next holiday.  Last night, we lit up the tree and it was as if a calm overtook our home.  Finally, peace.  Oh, and it was bedtime:)

What does she think?

She loves them!!

See?  Peace.  It has to be magic!

I hope your families have experienced a similar calm, even if it was preceded by a wild and crazy storm.  Sometimes that is the calm we appreciate the most, don't you think?  Tonight, I read a quote by Sigmund Freud that encouraged me-"One day, in retrospect, the years of struggle will strike you as the most beautiful".  I will hold onto this thought and tonight it feels like enough.