One of Those Days

Today was one of those days that left me wondering at God's generosity and goodness.  How could He have decided I was deserving of this precious girl?  Why me?

We arrived at the hospital early this morning to prepare for Angie's 15th laser treatment for her port-wine birthmark.  I was apprehensive because Angie has become increasingly aware of her "polka dots" as she calls her appearance after the pulsed-dye laser treatments.  She talked about the process with each of the staff members that visited her, and she told them, "My mom says I am a rock star!".  That doesn't even begin to describe her.  She amazes me.

Look at her puppy dog jammies.  Pretty adorable, aren't they?

Angie told her doctor that she was excited for her polka dots and she wanted to "get going on the ride", meaning the trip back to the treatment room.  I was questioned more than once about my decision to forgo a pre-med to help Angie relax.  Were they kidding?  She couldn't be more relaxed!  Here she is when they came to get her:

The doctor decided to "turn up" the laser today, making it stronger and increasing its effectiveness.  As if hundreds of lasers shooting her skin wasn't traumatic enough.  Consequently, Angie was given some morphine as she came out of the anesthesia to take the edge off of the pain.  And some ibuprofen.  And some tylenol.  That is how we roll, when they "turn it up".  True to form, though, Angie was ready to go home less than an hour later after she came out of the fog, stating, "Thank you for rocking me when I cried after my polka dots, Mom".  She just blesses me, over and over.  Every day.

Most of us would call it a day at that point.  Angie, though, went on to insist on macaroni and cheese for lunch and followed her laser treatment with a stop at the pediatrician's office to check the healing of her ruptured eardrum.  In the office, she joked with Dr. Copeland and showed him her dance moves.  She told him, "I am on Spring Break, whoop-whoop!" (insert dance moves here).  Truly, she amazes me with her courage and her unstoppable humor and grace.

Now, finally, she is resting.  I can't help but look back on the day with reverence and awe.  What a privilege to be in this angel's presence every single day as she impacts the world around her.  I will never get tired of hearing how brave and strong she, as I did today, and as I do time and time again.  Thank you, Lord, for trusting me with your child.

The Story of a Boy

I will try to keep this short but I couldn't let today go by without telling the story of Levi.  Thirteen years ago today, a tiny baby was born weeks too soon in a chaotic, unsettled series of events.  Our family hoped he would join us and 3 days later our hope was made a reality.  I will never forget the day he was delivered to us in a snowstorm, wearing only a t-shirt and a diaper.  I was in love.

Our baby boy was born trembling uncontrollably and uncomfortable in his skin.  The lights and sounds of the world were an assault to his system.  He couldn't eat or sleep as other babies did and this continued for over 6 months, eventually requiring serious medical interventions.  To be truthful, it continues on some level today.  Over the years he was slapped with an alphabet soup of diagnoses but none of them should define him, they simply help the professionals understand what might or might not help him.  Pretty worthless, actually.

Since the day that we welcomed Levi into our family there have been highs and lows and they have been extreme.  We dug into our parenting reserves and often we came up empty.  And yet, there was joy.  Knowing what I know today, I would do it all over again.  Levi has made me into who I am.  Because of him, I know that I can withstand the most excruciating of tests and I will not be broken.  I have learned to advocate and to not give up when I am told NO.  I have learned the true meaning of unconditional love and that love is an action, not a feeling.  And most importantly, I have learned what it feels like to have a child take up permanent residence in my heart, regardless of his physical location.  I am a better person for knowing and loving him.

We never would have guessed that Levi would eventually be made whole by a set of circumstances that require him to live outside our home.  Of course we didn't.  What is important is that HE IS.  I am anxious for the day when he can be home again, if that day comes, but for now, it is enough to know that we have come full circle and it feels like a victory.

Happy birthday, my precious son.  We love you more than you know.

Weekend Fun

We took the kids to Great Wolf Lodge this weekend.  I think most of the rest of the world took their kids too.  We had a fun, crazy, busy weekend and it was wonderful to be there together.  Toby picked Levi up in Portland on Friday so he could join us to celebrate his and Josh's birthday.

Have you been to the Great Wolf Lodge?  If you have, you know that it can cause extreme sensory overload for even a person with nerves of steel.  The boys were old enough to do their own thing and Angie was asleep by 7 on Saturday night.  Guess what time Toby and I went bed?  I think it was 7:10.  We both came down with a cold/flu/sinus bug last week so we were grateful for an early night.

Angie LOVED the waterpark, although she was quite nervous about being knocked down.  When I was away-Toby sent me to the spa:)-Toby took her down a ride in a raft with the boys. Not something I would have done, but he is a FUN parent!

On Sunday morning, I took Levi and Angie down to Starbucks.  We waited in line with about 50 other exhausted families.  Angie was antsy and Levi kept her occupied while we waited.  When we
reached the front, I asked Levi to take Angie to the side to wait for me.  The woman behind me tapped my shoulder.  She said, "I have been watching your family and your son is so good with her.  He is such a good brother".  You know what, she is so right.  Levi is a kind, caring,wonderful child.  How nice when someone else notices.  The woman told me that her daughter has Down syndrome and she hopes that her older son will someday be as good with her.  Oh, my heart!

This weekend meant a lot to me.  I forgot to say that there was a large Down Syndrome group at the lodge this weekend and it was heartwarming to see other families raising children with special needs enjoying a typical family activity.  I already knew, but I was impacted by how much they were just like any other family.  Like my family.

It was so nice for all of us to be together this weekend.  Even though it was crazy and exhausting, we were a family, and that is all that matters.

The Change

I have been noticing a change in Miss Angie lately.  She is growing up.  All of a sudden, she has a maturity and composure about her that is new.  I read a quote today that said, "She quietly expected great things to happen to her, and no doubt that is one of the reasons why they did."  I think that sums her up perfectly.

Today was Hat Day at school as part of the celebration of Sr. Suess' birthday.  I would say she nailed it:

Sometimes I forget how hard simple tasks can be for Angie.  Things that others take for granted like getting into a chair, getting onto the school bus or in and out of a car, writing, learning, or sleeping through the night.  All of these things take so much effort for our girl.  And the reason I forget this is because she does not complain.  Ever.  She takes her lot in life in stride and she never says, "I wish I could"...........anything.

I wish I could say the same about myself, but instead I am all too happy to have a pity party when life does not deliver what I think I deserve.  You too?  It is hard not to be discouraged, isn't it?  To be honest, I don't know how she does it.  It is easy to say, "She has never known anything else", but really?  I think I would still be frustrated and angry most of the day if I had to work as hard as she does.

This little girl is my hero.  Without her in my life, I think I would be stuck in my pity party indefinitely.  Instead, I have a living breathing miracle to remind me that NOTHING is impossible.  She never gives up.  Every day I wake up and thank God for another day with this precious child.  Before I go, I want to share a video I took the other day.  It is the perfect example of the joy that is bursting from Miss Angie's little body.  I have watched it a hundred times already.  Hope you like it too.......