"My cup runneth over..."

I had the amazing opportunity last February to participate in IF:Gathering and let me tell you it was great!  I came away from there with a fire in my soul (literally - this tugging on my heart that could have only come from one place) and it has been growing and smoldering ever since.  It is no secret that I have always been called to teach, and even in this crazy time of education I still love it every day.  But I have always had a desire in my heart to teach a Bible study, but it has just never been the right time, or God's time apparently.  Well, after IF: Gathering 2015 I kept hearing this small voice asking if I was doing what God was calling me to do.  Well, I am fairly busy in the church, trying to help out and participate where I feel called, but there was still this tugging.  Then God put on my heart to begin a women's Bible study and he even placed someone on my heart to lead it with me.  Then he even provided a place for us to meet and next he actually provided women who needed this time together.  It was amazing.  We began meeting every other Monday night and just having a time together to share in each other's joys and sorrows and learning God's word together has been invigorating.  I was getting to see God's plan for me, and for others, unfold right in from of me.  

We just finished our 1st study (Stuck by Jennie Allen - highly recommend it) and during that I kept praying about how I am using the time God has given me and whether or not I am using my talents in the way he wants me to.  He kept putting on my heart to continue this Bible study and so I stepped out of some of my other roles.  We were going to take the holidays off from the Bible study but I let them know I was going to start a study on my own if anyone was interested (Seamless by Angie Smith - Can't wait to delve into this one), well, guess what?!  We have a group 8-9 women still coming together on Monday nights, now every week, and we are going to continue our time in God's word through the holidays.  

I am just so blessed to be part of these women's lives and getting to see Him work in their lives is such a gift.  As were are beginning our new study I have been reflecting on my past Bible study experiences.  I have had some great teachers in my life and I know they have helped to fuel my fire through these years.  My mom always taught me (really through example) the importance of spending time in The Word everyday.  My dad was such a scholar of God's Word and if you ever had a chance to be in one of his classes you were truly blessed.  

But one teacher in particular really stands out.  Sherrie took the time to take a group of young high school and college girls aside and really teach us how to study the word.  She taught us to "Take Ten with God" and her FLA style has always been a part of how I study.  She showed us that we didn't have to have a fancy Bible study with videos and teachers, that we had all the tools right there with us.  She empowered us to grow in our relationship with Christ everyday.  She instiledl in us a desire to spend time with him and she made in attainable for everyone.  She taught me how to open any part of the Bible and find how to learn and apply it to my life.  She strengthened my prayer life and demonstrated the importance of spending time quietly with him everyday.  These are lessons that have followed me for the past 20 years (yikes!  Has it really been that long?)  And now I have the opportunity to share with other women and hopefully empower them in the same way.  

How is God trying to use you today?  What people has he place in your path to guide you and lead you to where you are today?  Are you allowing Him to use you however He sees fit?  Or God is sovereign and he has a plan for your life.  It is an awesome ride if we just get out of the way.

It's amazing how much a deletion can add to your life

I had the privilege at the beginning of this month to share about our crazy, busy, fun, challenging life with the women at our church.  I was a bit nervous, but after I finished I regretted not inviting other family friends to join us.  So, I thought I would share a little about my talk.  My wonderful friend Kelly and I spoke together, but I don't have all that she shared :)

As many of you already know, Annika was given a suspected diagnosis of cri du chat at a month old.  I took her in to see her primary care doctor because she just cried all the time.  He came in and checked her out, walked out of the room.  He came in again and looked at a couple of other things then walked out again.  This happened a couple more times and then he walked in with his lap top and proceeded to say, "I think she has this genetic disorder."  He didn't know much about it and was showing me web sites that said she wouldn't walk or talk and would be mentally retarded.  He showed me pictures of kids who sorta looked like Annika and then informed me he would refer us to genetics (this was November and we received and appointment in April).  I just tried to hold myself together (her doctor is not the most compassionate person, but he did give me a small hug and I wiped a tear away and said, "It's going to be ok") until I could get to the car and call Bruce.  He couldn't understand a thing I was saying, but I managed to spell the name so he could look it up at work.  

All I could think about was all that my kids was going to miss out on.

•  walking and talking
• playing sports
• getting married
• having kids
• hearing her say "I love you"
• sharing girl times with her sister
• college
• boyfriends
• dances, graduation.....

I just kept thinking of all the things she would be "lacking" in life.  As I pulled away the song "Overcomer" was on the radio and I thought, "Yes, she is an overcomer and we will overcome this!"  We were in a bit of denial for a while.  We were able to get an earlier genetics appointment in February and he agreed with her primary doctor and said she needed testing.  We had both been in education for awhile and we were just not ready for the stamp to be placed on her.

I remember during all of this my sister kept telling me that people were praying for her.  One day I said, "What are they praying for?  They can't "fix" her, so why are they praying for us?"  Not that I didn't appreciate it I just didn't understand.  We were just going through life like we needed to.  Wiping up barf (she threw up all the time) and moving on.  I did start to understand why people were praying and I still nee prayer every day.  

As I found myself on my knees trying to make sense of everything God brought me this verse, 

" I cry out to God most high who will fulfill His purpose in me." Psalms 57:2

I began to realize that God would not only fulfill His purpose in me but also in Annika.  As I think back to all the things in life I thought she would "miss out on" I realized they are all worldly things.  Activities that the world, and even me, measure success through.  I began to realize (I mean I already knew it, but I sure was quick to forget) that His purpose is not the same as mine.  He doesn't measure a successful, happy life in the same way I do.  I am pretty sure my worldly ideas are much less fulfilling than anything He has in store.

" I have told you these things so that in me you may have peace.  In this world you will have trouble.  But take heart! I have overcome the world." John 16:33

He has overcome it all; cri du chat, the throwing up, challenges with daily living and anything else that might be difficult.  He has overcome.  

We began to meet with therapists and specialists and tried to get her to gain weight.  It took us until her 1st birthday to get her into a GI doctor.  As we sat in that appointment I heard the doctor use the term, "failure to thrive."  I am not going to lie, I wanted to punch him in the throat.  How dare he say my child "fails to thrive."  Does he even know what she goes through?  Another favorite song came to mind, Thrive by Casting Crowns, that says, "We are made for so much more than this ordinary life; we were made to thrive!"  That's my Annika right there.  She was made for so much more than I can even imagine, and this world is nothing compared to what God has waiting for her.  


It has been a battle, but we have made it to her 2nd birthday and she is doing amazingly well.  She has worked so hard during every therapy session this year, has overcome her Nissen surgery and G-tube surgery and is gaining weight and meeting her own milestones.  She touches every life she comes in contact with and makes everyone's day brighter.  Not everyday is easy but it is so worth it.  I know that we have many struggles ahead of us, but when I think of all that has been added to our life because of this deletion I can't imagine life with out that wonderful girl.  In the last 2 years I have had more joy that I ever thought was possible.  I have loved my husband and my family more deeply and clung to them a bit tighter.  We have people all over that love and support us and celebrate every tiny victory with us.  These are just a few of the ways God has filled our lives on a daily basis.

Chronic sorrow....that's not me, is it?

http://susanellisonbusch.com/chronic-sorrow-in-parenting-a-child-with-a-disability/

I saw my friend posted this article the other day and I found myself offended at the title. I thought, "This is so not me. I am joyful. I choose joy every day and I am not sorrowful." But I have  to admit, as I read it I began to see some truths.   As I did I found myself shaking my head in agreement. I didn't mean to, but these were all feelings I could relate to. These were all things I have experienced in the past two years. But "chronic sorrow", that is not me. I am not sad day in and day out. I really am joyful and I love seeing Annika defy the odds. But I guess if I'm truthful there is  part of me that is always hanging on the edge, scared to see what's next or what we might be missing out on. I guess if I am truthful this article describes every emotion I have had. So what's my point in sharing this? Sometimes I show up to work crying for what seems like no reason at all. Sometimes I see a baby hug his mom and smile and tears fill my eyes. Sometimes other kids move on to the next step and we are celebrating back at the first step. I thought by sharing this others might understand when the tears come or when a little extra support might be needed. Maybe someone else is out there and doesn't know how to put words to their feelings. Maybe sharing this will help someone else like it helped me. I am still coming to terms with the words "chronic sorrow" but it does help me understand my feelings.

Anger

Looking back at some of my other blogs is making me even more angry at myself for how I am feeling, but sometimes I just feel angry.  I don't want to and then I get so upset because I am feeling that way, but it just continues as a vicious cycle.  What makes me think I deserve it any other way?  Sometimes the frustration of seeing all that is going on around me is just more than I can handle and I just want to scream.  I get angry because my crying baby can communicate what is wrong when she just cries and cries.  It doesn't happen often, but when it does it just breaks my heart.  I get angry because Madelynn dreams about her future, and having kids of her own and then adds, "And Annika will live with us too so we will also have her."  I love that it seems so natural to her thinking but I hate that that is what she thinks about for her future.  She doesn't see the late night conversations with her sister, trips to the mall, or even sharing the joy of having children together.  No, she realizes that Annika will be like one of her kids.  How can I feel so proud and so angry all in the same moment?  

I have to speak to other women in about a week about being a special needs mom and I am not even sure I know what to share some days.  Do they want to hear about the triumphs?  Do they want to hear how I have to choose joy everyday?  Do they want to hear that I have to constantly NOT do the mental math of what my child "should" be doing compared to other kids?  I am really not sure I am qualified to even be sharing sometimes.  I am happy and I do love and adore both of my kids, but then there is just this underlying anger and I am not really sure what to do with it.  I would want more than anything to curl up in my dad's lap and just cry it out, but that too is out of reach.  

But then the anger fades.  There is laughter.  A smile that could melt the most angry heart.  There is a look that says I love you, even if I may never hear the words.  I grasp onto that and cling to it as if it is a life preserver trying to pull me out of this anger and despair.  I can feel the storm in my heart calming and I remember that the things of this life don't matter.  The things of this life don't last.  God has a perfect plan and HE IS FAITHFUL, even though I am not.  HE IS FAITHFUL, even when I doubt.  HE IS FAITHFUL, through all my struggles and fears and anger.  I know no other way....

  

Troubleshooting

I think parenting often feels like troubleshooting.  You try a punishment, you try a reward, see how it works for you kid and then go back to the drawing board.  Things never quite seem black and white and what works with one doesn't seem to work with the other.  Well, when you have a child with special needs I feel like you can multiply the amount of trouble shooting by about 100.  

In March Annika had her surgery to fix her severe reflux and throwing up.  I was glad we had reached this conclusion to have this done and knew it was going to help her.  She has done so well over the past few months.  She has hair (which seems to be the first thing most people notice), she is trying so hard to crawl, she is make more and more vocal sounds every day, and she does throw up less.  

That being said, she is still having these awful "gagging" episodes.  I really don't know what else to call them.  It is not like she is gagging on something in her mouth it happens further down in her stomach, but that seems the best way to describe it.  I feel like I am constantly troubleshooting to try to figure out ways to improve this occurrence.  She is not supposed to be able to bring up milk, but of course we are over achievers, and she is able to bring up milk through her surgery.  It is so awful to watch and takes so much energy out of her.  So, each day I am back to the drawing board just trying to figure out how to help her.  Feed her faster, feed her slower, wait until she has been up for awhile, spread out her feeds.....and the list goes on and nothing seems to help.  She is on some medicine that should help but we aren't there yet.  

Some days I just want to have a relaxing day.  I don't want to problem solve, I don't want to juggle our schedule between therapies and Dr. apts, and I don't feel like smelling like barf.  But this is just not the way it is.  So, find peace and joy in the little thing around you.  Last night Annika was laughing hysterically.  I am not totally sure what she was laughing at but she thought it was the funniest thing ever.  And right there, that is why I will continue to juggle, schedule, and doing laundry.  

  

If your heart was crushed, what would be revealed?

Looking at these pictures just cracks me up.  The three of us are so blessed to have each other.  I can't imagine not having my sisters.  We may have not always gotten along, but we have always loved each other.  I remember wanting to have friends over in the summer time and my mom, who was probably tired of having others over, would say, "You don't need anyone to come over, you have your sisters."  I'm sure it was annoying at the time, but she was right.  
Over the last few weeks I have been thinking about the three of us and how much we have grown over the past 5 years (yes, we have gained and lost a bit of weight, but I mean in our faith).  I think back to the night in the hospital with dad and the countless people who had told us, "There is just something different about your dad," we knew what it was all along.  As I held is chubby, Papa Bear hand I could feel the callouses and he just had a peaceful look on his face.  As I stood there and watched the numbers count down I felt my heart literally crush inside my chest.  I couldn't even imagine what life would be like.  Here I was pregnant with my first baby and I just lost my hero in life.  It was physically hard to breath at times.  None of us are the same since that night, but I can say, as I look at my sisters, we are much stronger than we used to be.  Our heart was crushed and our true faith came out.
As many of you know, the last year and a half has been a bit different than I had planned, and once again I found myself in a situation where I was not sure I would be able to breath and get through it.  As I heard the doctor say that he thought Annika had a genetic disorder where she might never walk, talk, crawl, say "I love you" and may other things, I felt my heart being crushed inside my chest from the pain of all the things I thought I would miss out on.  Even as I write that I feel a tightening in my chest that makes it heard to breath.  I know I am not the only one in my family who felt their heart crushing as we imagined the future.  But once again, as my heart was crushed my faith grew stronger.  I had developed a trusting relationship with God over the years, so during this time I had strength that could only come from Him. 
Over the past 5 1/2 years I have seen the three of us grow closer and closer together, even if we were farther apart in miles.  When I call my sisters with anxiety about what the future holds or just frustrated about life, they are the first ones to say, "Let's pray right now."  And in that moment my heart feels lighter as I turn to the one, my Savior, who is stronger than all my fears, all my worries, and my sadness.  My sisters have helped me to remember what is really important in life.  Together we have challenged each other to work at becoming the women of faith we were created to be.  It is not an easy road and many time we find ourselves in a sea of self-pity or anger, but, guess what, I have two sisters to pull me out where I am back on the solid promises of Jesus Christ.  
So, the question is, if your heart is crushed what truth would be revealed?  What is inside your heart and what would you turn to in that time?  We have to learn to trust before we can have strength in Jesus.  And we gain that trust by daily spending time with Him, knowing His characteristics so that in those heart crushing times we will have complete trust and strength in who He is.  There is no magic pill to get more strength; it comes from trusting God and everything He has in store for your life.  I am thankful for my sisters who always build me up, encourage me to rise above my situation, and give all the glory to God.  Like the old hymn, "Tis so sweet to trust in Jesus, Just to take him at his word, Just to rest upon his promise, and to know, "Thus saith the Lord!"

What would be revealed in your heart if it was crushed by some sort of bad news?

"The joy of the Lord is my strength" Nehemiah 8:10

Set apart for a great purpose

I have known from the very beginning that God had great plans for our Annika Grace.  The moment I received the news that she might have a genetic disorder (ok, it may have taken me a couple of moments to wrap my brain around everything) I knew God had a reason for placing her in our lives and I could not even imagine what was in store for all of us.  As we started to plan for Cri du Chat awareness week I have been blown away by the love and compassion we have seen from our friend, family and community.  

We started with Annika Hatch day at the baseball game last week.  The night before I felt and overwhelming anxiety in my chest and I prepared to put my tiny, 15 pound little girl out there in front of everyone and I was just not sure I could handle it.  Luckily God has surrounded me with people who constantly remind me to turn my eyes to Jesus in all circumstances.  So, as soon as I called my sister and started to freak out she stopped me and said, "Let's pray."  Right then and there she prayed for all that would hear about Annika and the plans that God had for her and I remember that it was not about me.  He is greater than all my fears.  The ball game was fantastic and we brought awareness to the rare disorder.  

Gayle and John on Annika Hatch Day

Madelynn and Chris at the baseball game

I have LOVED seeing the pictures of everyone in their Team Annika shirts.  When we first got them Madelynn wanted to wear it everyday.  Again, I am touched by the amazing love that has been shown to us.  My sister and Beau created these shirts to show their love and support for the niece they love so much and it gives me great pride to wear my shirt around and have people ask me about it.  I can't wait to get all the pictures of people in their shirts and make a book to show Annika all the lives she has touched and how loved she is.  Many people wanted the money from shirts to go toward Annika and because of this we were able to pay for her entire hospital stay (at least the bills we have received so far) in full.  Again, I am so grateful and humbled buy the love people have shown us.

On Sunday May 3rd we had a walk here in Bloomfield to raise awareness for Cri du Chat and we had such a great turn out.  It took my family a bit to get started and as we rounded the corner and began walking up the street and I saw all of our friends and family there to show their support I just felt my heart fill with love and thought, "This is just one of the small ways God is using Annika's life."  I can't even imagine what is to come.  My absolute favorite part of the day was sitting around on the grass at the fire station with all of our friends and just enjoying life.  God used her tiny life to remind us the importance of friends and the importance of slowing down and taking time for each other.  I can't even say thank you enough for all people have done for us.  My heart is full.

The love of a daddy and his little girl

Sitting around and having fun

Big Sister Madelynn having fun

Nothing like a good Popsicle after a walk

The Bloomfield, NM 5k for 5p- Group