First Week of School!!

School started back on August 20.  We officially have an eighth grader, sixth grader, and a first grader!  I can't believe that Mary Ashtyn started her last year of middle school.  Next year, she will be in high school!!!  Reece loves 6th grade.  This is his first year to change classes and it's going great.  Lily is rocking first grade!!  She is making friends and loving every minute of school.  What a blessing that all three of them are so happy with school this year.  I am slowly getting back into the work routine and it's not so bad :)

Open House, she was so proud of her desk!

Ready or not, here comes Silly Lily!!

Sweet girl raising her hand

 

 

 

 

 

Worn out after her first day of school

Reece opened his locker on the first try...one less thing for this Mama to worry about!!

Mary Ashtyn will march this year with the BCHS band!!  Love these CRAZY friends :)

Marching in the band, twirling for CMS...busy, busy,busy!

We are looking forward to what the 2012-13 school year will bring.  With our three miracles, it's never a dull moment for BamFam5.  Thank goodness!!

Hi Ho, Hi Ho....

I woke up at 4:00 this morning to check on the kids during a thunderstorm.  Mary Ashtyn and her spend the night company weren't fazed by the storm.  Teenagers can sleep through anything!!!  As I moved into Reece's room, where he and Lily slept (she asked to sleep with GuGu last night), she was sleeping all snuggled up to him.  It took my breath away to watch them sleep.  So sweet and quiet!!  If you know these two, quiet is very unusual for them!!  Lately, Lily has even been talking in her sleep.    

I have always loved to watch my babies sleep.  As I moved around to kiss them, Lily woke up and needed to turn over.  She is sleeping in knee immobilizers now to help prevent knee contractures, so it's harder for her to move herself in the night.  Her leg was hurting, so I took the brace off and rubbed her knee for a few minutes.  She looked up at me and puckered her little lips for a kiss.  Oh, how I love this sweet girl.  After I took her to the restroom and got her tucked back in bed, my tears started  and now I'm sitting in the dark sobbing.

I started back to work yesterday and it's the hardest thing I've ever done.  We've faced some tough things in the past 9 months between hip surgery, a body cast, and a Muscular Dystrophy diagnosis.  Nothing compared to walking out the door yesterday and leaving my kids after getting to be "just" their Mom for so long. 

Don't get me wrong, I love my job, the people I work with, and especially the kids that I have in speech therapy!!  I was so glad to see my co-workers yesterday and I'm looking forward to seeing my students again after so long. 

It's just different now.  Our life is so different.  There are walkers, standers, AFOs, knee immobilizers, a Cough Assist, and a portable suction machine scattered throughout our house.  There is even a placard hanging on my rear view mirror for handicapped parking.  There is a little girl who I had not even held in my arms a year ago that I love so much now it hurts!!  More than anything, my heart is so different. 

Lily makes me realize how fragile life is and that we need to enjoy every minute of it.  I honestly don't want to spend all day without her.  Where is Ellen or Oprah?  Anybody got connections to get them to pay off our house, car, and adoption loan so that I can stay home??  ANYBODY??  Yeah, me either!!! 

My heart is here with Mary Ashtyn, Reece, and Lily Joy...but my paycheck is there, at my job.  So, it's off to work I go.

Pray for me today and for the other Mamas that you know leaving their babies and heading off to work, it's tough sometimes.

Lily On the Go!!

After a long drive home from the beach on July 17, we pulled into our garage to find another set of wheels waiting for us!!!  Our favorite physical therapist (Aunt Ashlie) dropped off Lily's walker as we traveled home.  At 11:30 pm, I didn't think our sleeping girl would have any interest...ha!!  She woke up as I carried her inside and wanted to see "that blue thing".

She was wide awake and giggling as I put her in it.  As she moved across the kitchen, she kept saying, "wow, this is fast...slow down".  It was hilarious!!  She moved onto the carpet and walked all around the den, turning around and even backing up.  She stopped and looked at me with her little eyes full of tears and said, "I can go anywhere, Mommy...even outside".  I can't even imagine how that felt for her.


The next day, we had an appointment at Children's Hospital.  She left the clinic, walked across the lobby, through the crosswalk, and all the way to our car!!

 Fuzzy Pictures from my phone, but look at that smile!

Her first chance to walk outside was later that week during physical therapy.   Aunt Ashlie wanted her to walk up and down the sidewalk.  Silly Lily wanted to race in the parking lot!!  Guess what...

 On Your Mark, Get Set, GO!!!

 Uncle Wes stopped by for lunch and a quick race.

Lily Wins!!!

Sunday was another day of freedom and independence.  Lily was able to walk into church and go to her own Sunday School class for the first time!  I really wanted to stand at the door and sob, but one look at her making circles in her walker and I was laughing instead.  

Sweet friends at church

Making Rice Krispies Treats

Bible Story Time

It has been so much fun to watch her explore and do things on her own.  For years, Trent and I thought we couldn't handle parenting a child with "special needs".   I am thankful that God always knew exactly what we needed...a tiny little girl with a big, ugly diagnosis who teaches us every day to cherish and celebrate every minute that we are given.

Thirteen Years Ago...

This sweet baby girl was placed in my arms in a hot, airless room in Kalmykia, Russia.  I will never forget unpacking a diaper bag full of baby toys, dolls, and pacifiers as we waited for a nanny to bring Mary Ashtyn to us.  We were scared to death...first time, young parents in a foreign country with no clue what to expect.  Trent was videoing me and I can honestly say I had that "deer in the headlights" look.  My eyes were full of fear and my hands were shaking. 

All of the sudden, the curtain that hung in front of the doorway parted and in came our first little miracle.  As the nanny passed her to me, Mary Ashtyn's little chin started to quiver.  I whispered, "please don't cry, I've waited for you for so long".  She looked straight into my eyes and reached her little hand up and put it in my mouth.  I put my head against hers and just sobbed.  She was our dream come true.  Thirteen years later, she still is. 

For this child did I pray, and the Lord hath granted me my petition, which I asked of him.

1 Samuel 1:27 

Happy Gotcha Day to the the most amazing daughter and big sister ever!!

Summer Fun

During the summer, we love to go, go go...to the beach, to the lake, to the beach, to the lake, to the beach.  Last summer, we dreamed about having our little ladybug with us and wondered if she would love the water and traveling as much as the rest of us.  Once she was diagnosed with MD, I thought we might have to change our lifestyle completely.  I never said it out loud, but I wondered if we should sell the boat and our RV.  How could Lily enjoy all this?  After 4 beach trips and a week at the lake...

My little ladybug reminded me once again that she can do anything!!!

Building sand castles...what a great big brother!!

Hanging out with Grandmama and Grandy

Reece and Lily...missing Mary Ashtyn while she was on a youth trip

Snorkeling

Making Memories

Driving the boat

Reece

Mary Ashtyn

Lily's first tube ride...she loved it!!!

Watching the big kids act crazy on the tube

FUN!!!

Fourth of July at the lake

 

 

 

 

Looking forward to many more trips with the BamFam 5!!

 

Peace

 We have to pray with our eyes on God, not on the difficulties.

On the last day of the NIH study (June 11), I spent about an hour and a half watching this sweet face during her MRI.  Although we don't have any results of the MRI yet, we know that it will more than likely show some brain abnormalities.  NOTHING serious just differences in her white matter that is common with Merosin Deficient Congenital Muscular Dystrophy.

During her MRI, they brought me a chair so that I could stay right beside Lily.  It was a great extended prayer time for me (in between giving her huge smiles and thumbs up).  Knowing that this test would show another difference in her sweet little body...most would expect me to sob throughout it, right?  Nope!  I spent my quiet time thanking God for each and every second that He lets me be Lily's Mama.  I prayed for wisdom as we learn more about her MD and seek out the best treatment for her.  There was no begging for healing, just a request that He use her to show us all how amazing He is.  The peace that I felt sitting there with Lily during her MRI can only come from God.

Don't worry about anything; instead, pray about everything; tell God your needs, and don't forget to thank Him for His answers. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ.  (Phil. 4:6-7)

NIH Day 2 Pictures

Motor Strength Eval

Follow the pen, Dr. Bonneman...Lily in charge, again!

Sophie and Lily, beautiful girls enjoying lunch

OT Eval

More Physical Therapy Assessments

All smiles...testing is done for the day!! 

Lily loves the indoor play area.

Ready for a trip to downtown Bethesda!

Beautiful Ella waiting for the Metro

Ella, Nevan, and Lily...loved meeting this sweet family from Canada!!  Great night out for dinner and ice cream.

Lily waiting for the metro...she wanted to get closer, NO!!