Sweet Anna Grace

Sweet Anna Grace

Sunday, February 8, 2015

Sweet Moments

I am going to try to do better at updating our blog. I want it to be a way to record memories and continue to share Anna Grace's story.

Today was a mix of emotions. Makenzie is starting to ask more questions and express some of her feelings regarding how MSD is affecting her sister. It breaks my heart to hear how she hurts and wishes Anna Grace could play with her more. At the same time, my heart hurts for what Anna Grace is going through...I know that Makenzie is her best friend and if she could she would play Barbies, tag, have game nights and snuggle to watch movies with her sister. I have felt this pain for my sweet girls before. I have longed to see them running around the house together, having tea parties, dressing up and playing make believe, playing Barbies, and just be such close sisters. I didn't know how hard it would be to face the day that Makenzie verbalized her hurt and frustrations. These are growing pains as we travel this journey with MSD.

Oh how I thank God for giving Makenzie wisdom, patience and care for Anna Grace. She is so patient and helpful for her. I know He will provide her with all she needs as she matures in her understanding of the beast, MSD. Lord, grant me wisdom in my words as I answer her questions...may my actions and words point her to You and Your loving goodness and kindness.

A little later God began using His hands and little blessings to be the salve on my heart.

  • Anna Grace sang a little with me as we were driving. I was singing Jesus Loves Me. I sang, "Yes, Jesus" then paused and she filled in "loves you." It is so cute that she says you because when I sing it I say me so she refers back to me by saying "you". 
  • Anna Grace, Makenzie and I were invited to have lunch with a special friend who says that Anna Grace is one of the most influential people in her life. What a blessing!
  • As we were sitting at home watching a movie, Anna Grace came over and I put her in my lap. She looked at me with such sweetness in her eyes. Then she gave me lots of hugs and sweet "Anna Grace kisses." By the way, Anna Grace doesn't usually sit for very long. So for her to sit and give me kisses was special.
  • Anna Grace and I were in the bathroom to brush her teeth. I had her look in the mirror and told her she was so pretty (she likes when I say that to her). She just smiled her sweet smile. Then I would just talk to her in the mirror...at one point, she looked into the mirror and even seemed to point a little to herself and said, "Me"-I do not remember the last time she referred to herself like that.
So, now I will go on to bed and snuggle with Makenzie. She is a little sick tonight so she needs some snuggle time too. 

I want to close with a verse that is staying close to my heart lately...

"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." (1 Thessalonians 5:16-18)

Saturday, March 31, 2012

It Has Been a While

Hello dear friends! Sorry it has taken so long for me to post an update. We have completed all the baseline tests for Anna Grace and the tests came back normal! Praise the Lord!! They tested her heart, eyes, hearing and did a skeletal X-ray. It seems as if right now MSD is attacking her mind most of all. Her greatest struggles are cognitive, speech, fine motor and balance. She also has vision problems but it is not an acuity problem. Doctors say that her brain doesn't communicate very well with her eyes. But we are thankful that Anna Grace is healthy and happy!!! 

I want to start with saying how much I love my Savior, my God!! He is so good and faithful. My dear friend Jodie planned a women's retreat back in March. The theme was "Trusting God in the Desert." She asked if I would come and give my testimony. I am always excited to share with others what God is doing in my life...and in this case, how He was carrying me through the desert. However, the more I thought about it and talked with God about it, I just didn't feel like I should share. I was wrestling with weather my heart was in the right place. I wanted to be able to give God ALL the glory He deserved for the love He has shown me through this darkness. I did still attend the retreat though. The lake house where we were staying was beautiful and peaceful-just perfect for the occasion. As a mom of a five year old and three year old, you could probably guess that there aren't too many quiet and serene moments (although they are beautiful moments, just not, well let's say quiet and relaxing lol). From the moment I walked through the door I felt so peaceful-so much that it was a little uncomfortable. Throughout the weekend, God overwhelmed me with His love. In the quiet moments when it was just He and I He reminded me of His amazing love. As I sat just thinking about the road my family was walking down, my heart would ache but them My Savior, my friend would soothe me with His love. Friends, when we dwell on the love of the Father rather than our circumstances we allow Him to do great things through the broken pieces. 

As God was working on me He was also tugging at the heart of sweet Sarah. Sarah was invited by her friend and mentor, Carrie. **Side note: if you are a Christ follower, please find someone to mentor-someone to help grow in their faith**. As the weekend began Sarah was out of her comfort zone. Who wouldn't be. She was surrounded by people she did not know and talking about a God that she didn't have a relationship with. One afternoon we were asked to put our artistic ability to the test. Those of you who know me know that I am completely missing that gene. Anyway, we were to draw a picture of where we were in our relationship with the Lord. So, Sarah and I had a bonding moment because, um, lets just say she decided to use words on her canvas also rather than a picture. We came back together as a group and shared about our picture/words. I wrote RESTING. I truly felt like I was just resting in the arms of Jesus that weekend. Sarah wrote SEEKING!! Thank you Jesus for using Carrie to prepare her heart and for  inviting her to the retreat. 

Later that evening, one of the ladies led us in worship through song, chalk art drawing and a sweet message. Afterwards we began a prayer time. It started with a very personal request about a serious medical issue. And through it all she is TRUSTING the Lord. Then it was my turn. My heart was pounding and I knew it was the Lord saying that now was the time to share a little bit of my story. With tears in my eyes I began, it went something like this. "I know I seem so very emotional right now. I want y'all to know that although what I am going to tell you is very sad and breaks my heart, I LOVE my God and I trust Him." I read Psalm 40 (see previous post). I then proceeded to tell them about Anna Grace. I explained that after crying out to God, pleading with Him and being just broken that I said, "God, if we have to go through this journey, please make it worth it for your glory." I shared a little more and then it was someone else's turn. The last person in the circle was Sarah. She did not say anything so Jodie, being prompted by the holy spirit, asked Sarah if we could just pray with her about her seeking if she didn't want to talk. After a pause, Sarah said that she knew she needed to share but her heart was pounding so hard that she wanted to run out the door. Then with tears, joy and fear she began sharing...God had used the lady's chalk art drawing and testimony and the prayer time to touch her heart. She explained how hearing how much we love and praise God and trust Him while going through such tough circumstances makes her want the same kind of relationship. She wants to be able to trust God like that. She wants a relationship with the Savior. As my heart was leaping with joy for Sarah, she looked at me and said, "I hope I am worth it!"

Words cannot describe what I felt at that moment...or even now. What a God ordained moment!!! Only He could have written such a perfect story. In that moment He saved Sarah's soul and satisfied mine. Just knowing that the trial my family is going through played a part in the salvation of Sarah helps me see a glimpse of Gods great plan for my sweet Anna Grace. I want her life and my family's life to bring him glory. What a sweet gift to be able to see so clearly one of the reasons that Anna Grace has to go through life with this progressive disorder. 

Thank you Lord for the extravagant love you lavish on us!!

Sunday, February 12, 2012

More of You God

Anna Grace is doing well. She is staying very healthy! Praise the Lord. We go to Texas Children's in March and again in April to run baseline tests for her heart, lungs, eyes, and some others. We are praying that we get results that shock the doctors! Every six months to a year we will have them done again to monitor any changes. Thank you for the continuous love, support and prayers.

A sweet friend, Nikki Crain, has offered to have a Scentsy party as a fundraiser for Anna Grace. Nikki has opened an online party that you can access from her website. Just click here and then click on "Prayer for Anna Grace" under open parties. Nikki has so graciously said that all proceeds from the party will go to Anna Grace. I am continuously overwhelmed by the love and support that has been given to our family.

God really spoke to me this morning during worship. He reminded me that no matter life's circumstances, "there is no place I would rather be than here in His love." Click here to go listen to the song, Set a Fire. Take a moment and meditate over the words:

There's No place I would rather be
There's No place I would rather be
There's No place I would rather be
Than here in Your love here in Your love
So Set a fire down in my soul
That I cant contain
that I cant control
Cause I want more of You God
I want more of You

I am so glad that I am always in God's love...wrapped in His arms....being held by my Sovereign Savior. There is truly no better place to be.

In my Bible reading the other day, these words really hit home to me.

I waited patiently for the LORD,
and He turned to me and heard my cry for help.
He brought me up from a desolate pit,
out of the muddy clay,
and set my feet on a rock,making my steps secure.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD. (Psalm 40:1, 3)

I believe with all my heart that the Lord hears my every thought, sees my every tear, feels my every hurt. He has been and continues to refine me as I walk this unknown road with my precious family. I knew when I read these verses that He was putting a new song of praise in my heart. Now today, I know what song it is. It is a song about His love...of being in His love forever and always. I still have days that are hard, moments where I feel like I am back down in the pit. But it is in those moments that He lifts me back up and I am reminded of His unfailing love.

Oh, may my God be glorified in ALL things!

If there is someone out there that needs to talk, please know I am here for you. And, if there is anyone out there that does not know about Jesus and the love He has for you, please go read this. God loves you so much He sent His son to die on a cross for you. WOW! As a mother, I could not even fathom having to do this...God's love is more than we could ever imagine. Don't live your life without knowing it!

Saturday, December 31, 2011

Overwhelmed with Love

As I reflect over our journey this year, I am overwhelmed by the love and support that has been given to my family. Thank you, thank you, thank you for the prayers, cards, encouragement, financial support and the special little things so many have done to make Anna Grace feel so loved and special.

We did hear back from the DNA test about two weeks ago and they confirmed that Anna Grace does have MSD. Although doctors had predicted that Anna Grace did have MSD, hearing the confirmation was very hard. I am grateful that I serve a God that is sovereign. He gives me strength and peace moment by moment.

Anna Grace is doing very well. She is healthy...other than a little cold that we are all battling right now. She has loved being around all her family during Christmas. Now that she is back home, she has been playing with all her Christmas presents. Just today, we have enjoyed this beautiful day that God has given us playing baseball, alligator golf, jumping on the inflatable jumpie and having a picnic. I just love the sweet family that God has given me.

Cherishing Every Moment,
Leigh Ann

Tuesday, October 11, 2011

Where Dreams Come True

(End of August) A 14 hour rode trip (with a three and five year old) was just the beginning of a vacation filled with memories that will last a lifetime. When we first heard that Anna Grace has a terminal disorder, Brad said that he wanted to take her to Disney World. Anna Grace absolutely loves Cinderella and he wanted to make sure that she was able to enjoy Disney at least once more before anything happened to her health or mobile abilities. Brad's brother got word of this and had us a trip planned before we knew it. It was a wonderful trip. Both of our parents were able to come and Brad's brother's family as well. It was the perfect trip! We had the best tour guide too (thanks Brian). The highlight of the trip was when Anna Grace was able to dance with Cinderella and Belle in their special autograph room. Since our party was so big, our family was the only family in the room. It was a very special moment. She had been wanting to dance with Cinderella since we started on the trip. Anna Grace and Makenzie both had a blast! Memories were made that will last forever.

Another special event happened while we were gone on our Disney trip. A family friend, Haylie Stafford Dufour and her sweet friend Christi Blair, planned a softball benefit tournament for Anna Grace. I am in awe of their generosity. They had never even met Anna Grace. Thank you to all who supported the tournament and those who played in it. We are truly grateful for your support.

Some days are better without mascara...

The past few days have been no mascara days for me. My heart is heavy and hurting. Anna Grace's OT and PT are concerned that she is regressing a little. They feel that some things Anna Grace used to be able to do are harder for her now. I can even sense this in Anna Grace's behavior. She is getting frustrated and fatigued more than usual. I feel helpless. I don't know how to help her. I cry out to God to give her peace that only He can give.

Please pray as we prepare to go see two doctors at Texas Children's in Houston. We go in about a week. The doctor that set up our appointment is from Italy and is a specialist/researcher in MSD. I truly feel God led me to him. After Anna Graces's diagnosis, I began looking for information online, but didn't have much luck. Since MLD is so rare, I began researching medical journals about MSD and would email the authors. One doctor I emailed responded to me that he did not know much about MSD but that his mom just happened to be visiting him and she told him that I needed to contact Dr. Ballabio in Italy. He is the doctor that actually identified the MSD gene. He sent me Dr. Ballabio's email and I emailed him. I received a response fairly quickly and he told me that he actually comes to Texas Children's in Houston every two or three months and would like to see Anna Grace. I got chills upon reading this. Finally, someone to give me some answers to my many questions about this monster called MSD. I look forward to meeting him and hearing his thoughts about Anna Grace.

Lord, thank you for carrying me when I am weak, for holding me when I am hurting and for comforting me with your peace always. I lift my eyes up, my help comes from the Lord. Even though I don't understand and I don't like this journey we are on, I WILL TRUST YOU. For with you all things are possible. You are Sovereign and you are Good!

Monday, August 22, 2011

Anna Grace turns 5

Thanks Kalli, Whitney and Michelle. The banner was perfect!

Anna Grace turned 5 August 2 (same birthday as her Maw Maw Ann). She had a very fun birthday party! Seeing the joy on her face was worth all the work. We had planned on having a puppy dog tea "pawty" but changed plans at the last minute. While surfing the internet, I ran across a rainbow birthday cake. At that point, I knew that would be the perfect party...a Rainbow party!! I asked Anna Grace if she wanted a tea party or a rainbow party and while waving her hands in the air in a arched motion, she said , "rainbow!" So, we planned a rainbow party for her and included some of her favorite things: tea party, play dough, miniature golf, and a rainbow art project using glue. It was a success.

It touched my heart seeing how much fun she had. I mainly invited family to the party. Anna Grace seems to thrive more in a small group, so I tried to keep the guest list smaller than normal. Anna Grace was full of life that day. She was running and laughing and just having a blast. Of course, she enjoyed showing off "Rainbow"-a Havanese puppy that she got for her birthday.

Rainbows mean so much to our family right now (to find out why see my first blog). We are clinging to the promises of our Savior. We are trusting him and his Word. Lord, I know you promise to never leave us nor forsake us. Thank you for holding, leading and loving us. We are trusting that with you "nothing shall be impossible" (Luke 1:37). No matter where our journey leads us, you are there and your light is guiding our way. I love you Lord!

Ok, time for some pics!

Run Anna Grace Run

I just loved this cake! So precious and delicious!

Paw Paw and Nana
Maw Maw and Papa

Our precious family (Brad, Anna Grace, Makenzie and me (Leigh Ann)

Uncle Jason and Anna Grace being silly

We were reading the story, "Noah's Ark." Do you know what is at the end of this story??? You got it, a RAINBOW

Special times with cousins Maggie and Emma

Mommy's little angel (Friends forever)

We were glad that Madison, Chloe, Aunt Patsy (and Uncle Jason & Tyler) came