"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

What a great idea....A Legacy Bible

I just think this is an amazing idea and I wanted to share it with all of you out there.  I love writing in my Bible and looking back at the lessons God has revealed to me over the years.  After my dad died I studied out of his Bible for a while and it was as if he was right there with me teaching me lessons.  There was so much comfort in seeing his handwriting and reading the words he had written.  One of the blogs I follow shared this the other day and I wanted to pass it on to all of you.  I am thinking about getting a Bible and studying out of it for the year and then passing it along to Madelynn.  Then I couldn't decide what to do about Annika.  Of course I want to leave one for her, but then I found myself asking those questions I don't like to ask myself.  "Will she be able to read?  What will her life be like?  How much will she function on her own?"  I hate it when these thoughts come into my head because they depress me and scare me all at the same time.  But then I thought, "Why wouldn't I want to leave a legacy for Annika?"  Even if someone is taking care of her, wouldn't they be reading the Bible to her?  I sure would hope so.  So, I plan to get another one for her and study out of that for a year and then save if to pass down to her.  
I hope you can use some of her ideas to leave a truly lasting legacy for your kids also.  
Click the picture to take you to her post.

Time-Warp Wife - I am Leaving a Legacy Letter

Here is another resource if you are a bit more artistic than me.

Bible Journaling: What I've Learned and what I use...

Peace

It is hard to believe that I went round and round trying to decide whether or not to have Annika go through surgery when I see now how amazing she is doing.  I mean, don't you just want to squeeze those chunky thighs? :) She has gone from 13 pounds 6 oz on the day of surgery to 15 pounds 3 oz exactly one month later.  She has more color in her cheeks, her hair is growing and she is just so much happier.  
I have had people ask me, why did you wait so long to have the surgery?  She could have been gaining weight much sooner.  Well, I don't know about you but I find it difficult to make the choice to have my daughter sliced open (her scar is from her sternum to her belly button plus the tube) even though I knew it would probably help her.  I had to know that I had done everything I could be for I chose this.  God gave us the peace we needed for this decision when it was time to make that choice.  

Here we are a month later and she is doing amazingly well.  In the past if she was sick she would hardly eat at all.  This has not changed.  She has had a cold this past week or so and has not wanted to eat at all.  Well guess what little girl, you don't have a choice.  When she couldn't eat we would just hook her tube up and feed her.  That simple and she didn't loose an ounce.  It was great and took a ton of stress off of me.  

I know this is a scary choice if your child is having to go through this and I am sure some parents out there have some not so good stories, but for us it was the best decision for our child and I would hope other parents would consider it if needed.  She had the fundoplication surgery and a G-tube placed.  She can still take baths and she is rolling over and trying to crawl.  She can still go swimming this summer and she is already trying to crawl.  We leave her with babysitters, and have had to train them on how to tube feed her.  We even leave her with teenage babysitters so we can go out.  As long and they know what to do in an emergency (and we live in a very small town and are not far away) then I feel comfortable still living life.  Her challenges are not something that are going to "go away" or be "healed" so we still have to live our lives and have her part of it.  I think this is very important for all of us to function and normal as possible.  Plus, it allows others to be part of her life and enjoy her sweet, wonderful laugh and smile.  

Let His light shine

These last 3 weeks have been crazy.  It has felt like a whirlwind and I am hoping to catch my breath this week.  As I watch my little girls I have been thinking about their lives and their purpose.  We are here in the world as strangers; this is not where we belong and we are just visiting.  Don't get too attached because you won't be spending much time here; in the big scheme of things.  

"...You are a mist that appears for a little while and then vanishes." James 4:14

So, again I look at the lives of my little girls.  

This week I had the privilege of speaking to a Human Development class.  My neighbor asked me if I would come speak about Cri du Chat to her students.  Madelynn, Annika and I went and met these students who may become pre-school teachers in the future and I tried to pant them a picture of a parent of a special needs kid and what I would want them to know about my child.  It was very cleansing to share with these students the fears and doubts I have had over the past year ad what life might look like for my little girl.  As I stood in front of that class and spoke Madelynn was so good.  She sat and played with play dough and from time to time she added commentary to my talk.  She would chime in with, "We don't get throwed up on any more!" or "She loves it when I blow in her face."  It was no big deal to her that we were talking about her sister's lack of chromosomes or the fact that her 18 month old sister doesn't do things like other kids do.  She could care less.  She just wants her sister to laugh and maybe say her name someday.

Then I saw God's love and grace shining through my girls right then and there.  They don't get in the way of God's plan for their life, they are just living it.  This is my hope for them, that God's love shines through them and when others notice that something is different about them, they will see that it is God's love shining through them.

I only hope I can be like them and not get in the way of God's light.  I know life is short and that God has a purpose for each and everyone of us being here at this moment.  While we were in ABQ for Annika a sweet little girl who we don't actually know, but it felt like we did, passed away.  Her name was Violet and we knew her and her family from the Cri du Chat Facebook page.  Even though we will probably not meet most of these families, we still celebrate each other's victories and share each other's frustrations.  So, when sweet Violet passed away my heart ached for her family.  Here they had just been adjusting to the idea of how special their little girl would be and then God took her back.  It is hard to realize that our kids are just on loan.  I would love to actually meet this family someday because as I have followed them on Facebook through this dark time of their life, they have let His light shine every step of the way.  They have found a way to praise God through it all.  

My prayer for this week is that I stay out of God's way and he is able to use me to show others his grace and love, just like my kids and sweet little Violet.    

This girl is amazing!

Everyday there is something new.  She is so amazing!  She was doing very well before surgery at rolling over and trying to get on her knees.  Since the surgery she can't really do that, but she is starting to today.  I see crawling in her near future.  We just have to get those arms stronger.

A little talking...

Just had to share this for those of you who haven't seen it.

Leaning on God for strength

Oh my, don't you just want to hug her?!  What an amazing, brave little girl.  I can't believe all she has been through the past week.  As we were driving to ABQ for her surgery I had some scary thoughts about her procedure and the fact that there could be complications.  She is very tiny and tiny babies do not always do that well in these types of situations.  As the doctors took my sweet baby back all I could do was pray.  I told myself I probably wouldn't see her for about 3 hours (the surgery was supposed to take 2 so I figured give or take a little time at the beginning and the end) and during that time all I could do was lean on the one I knew was stronger than anything I was going through.  The words I read reminded me that I must trust:

• God's sovereignty and timing for my life
• God's method of giving me what I need
• God's provision from the fullness of His love
• God's heart being good and unchanging

What a great lesson as my baby was in surgery.  Well, she did so well it only took 2 hours from the time they took her back to the time I was able to see her again.  The next few days were a learning experience for all of us.  I was constantly amazed by her strength and so thankful for God's protection over her.  

A week and a few days later we were headed back to Bloomfield, and as I could hear my little girl talking in the back seat I was overwhelmed by God's grace and love He has shown me.  It was like I was bringing home a brand new child.  I had spent her entire life being thrown up on everyday.  We constantly have blankets and burp rags covering surfaces of our house.  I have made covers for her car seat and the straps for easy cleaning.  This had become such a part of our lives that it was normal to hear Madelynn yell, "Throw up!" from the living room.  It was such a surreal feeling that I just found tears rolling down my checks.  I can't even imagine the things God has in store for Annika and I am so grateful to be part of it.  I feel overcome with love and gratitude for the people who have been praying for us and who love Annika and our family so much.  

It is amazing that there is no throw up in our daily life, Annika has already returned to taking her milk orally, she is gaining weight, and I am sure we will be starting back on food very soon.  God is good, his timing is just right (even for surgery days), and his love is greater that I can even imagine.  

  

Learning hard lessons...

Ever had those moments when you are reading God's word and you literally feel a "whop" on the side of your head with your Bible.  As I read 1 Samuel 2:3 last night this is exactly how I felt.  I think I could still see the imprint of my Precious Moments angel pin on the side of my head in the morning.  Apparently it was quite a drastic wake-up call I was needing.  Let me step back in my story a little here.

As some of you may remember I have been asking prayers for the date of Annika's surgery to be changed because that is what I knew was best for me and my schedule.  If you were with me when I received the call I am pretty sure my words sounded something like this to the nurse, "Do you have anything earlier, like at the beginning of the week?......No?  Well, that is ok, my God will take care of that because he knows that date just doesn't work for me.  I will be praying about that and my God will get that taken care of!"  OK, that is not exactly what I said, but that was basically the meaning behind my words.  I felt like God would know that I needed more time with her and that I didn't have the time to take off of work so I was just sure that that was something that God would take care of.

Well, I have been praying and praying for this the last few weeks, as I know others have also, and still God has not answered my prayers.  I have been feeling frustrated and I really didn't understand why He was not taking care of this.  It just makes no sense.  Doesn't He know what I need and that I need to be with my daughter and ..... I, I, I.  Did you see all of those "I" statements in my thoughts.  I know you can see right where this is going. 

Last night I was doing my Bible study that I just started (a little plug here for it - Stronger  by Angela Thomas is a fantastic study recommended to me by Lynn). 

I am just on the 2nd day, but it has been very powerful so far.  As I am sitting in bed reading the words I get to this verse, "Do not keep talking so proudly or let your mouth speak such arrogance...."  And there was that "whop!" on the head I needed.  I began to think about my words when I had learned of Annika's surgery date.  I did not "seek first his kingdom and his righteousness" (Matt. 6:33)  I just assumed that God would know that didn't work for me.  Then one of the next verses.....

"My thoughts are not your thoughts, neither are your ways my ways," declares the Lord (Isaiah 55:8)

It is amazing when the scripture jumps right off the page and speaks to you.  God may as well have just said, "Hey, Blondie, listen up, I know what you have been praying but have you considered that my ways are greater and I have taken all these things into consideration.  I love and care about you so don't worry.  Trust me."  At least that is what I heard in that moment.  But then I thought I was just having full faith in God and what he could do, is that really wrong to boast about?  Well, it is if I am treating God like my puppet who will perform as I see fit in my life.  It is if I don't seek HIS WILL FIRST and pray his will.  Even being arrogant in my faith is wrong and not what God wants from me.  

So, after a lot of prayer time, I am realizing that God has this under control and I need to pray for his will in this situation and have full faith that He can take care of it.  I am praying for the specific Dr.'s and nurses that will be there that day and exactly what Annika needs.  He has greater plans for her than I can even imagine, sometimes I fee like I am just getting in the way.  I hope that you are able to learn a little from my mistakes.  

Out of the mouth of babes...

As a parent we always worry about our children.  I have been praying for my kids, before I even had them, that they would be protected from the evil around them, know the difference between lies and the truth, and that they would have a relationship with Jesus Christ.  I see this growing in Madelynn all the time.  She asks the most amazing questions.  I know why Jesus tells us to come to him as a child, full of questions and wondering and just wanting to know more, this is how we develop a relationship with our Savior.  My niece, Mackenzie, just accepted Jesus as her Savior and is going to be baptized soon, out of obedience, not that it is a magical experience, but that it shows a pictures to those around her that she has made a choice to have Jesus in her heart.  She was able to make this choice on her own, it had nothing to do with her age or any classes, it was because she felt that tugging on her heart and she wanted to have that friendship and loving relationship with Jesus.  
So what about kids who can't make this conscience choice???  I find myself thinking about this more and more lately with all the sweet kids who have come into our lives.  
I know beyond a shadow of doubt that Annika is spoken for and "no one will snatch them out of His hand" (John 10:28).  I have found comfort from the beginning of this journey that I know exactly where she will be for eternity and I will be right there with her.  (A few other verses you might want to check out 2 Sam. 12:39 and John 6:39)  God has this and He is sovereign and and I have faith in His plan.  
Well, this seemed easy enough for me to understand, but it is amazing how little minds work.  One of our sitter's kids, who adores Annika and I am sure loves her very much, had some questions about this.  I guess he was asking his mom about kids like Annika (and our sweet friend Reagan) and about how they go to heaven.  Then he asked about Annika's diagnosis.  Kristen told him that Annika was born with a piece of her 5th chromosome missing.  When she was born this is just how God created her.  "So, Annika will go to heaven no matter what?" said Caleb and Kristen told him YES.  

"So, God just saved a little piece of her until she gets up there?."

Wow, I could not have said it better.  As tears welled in my eyes I realized that is exactly what God had done.  He has that little piece waiting for her until she goes to heaven and gets her perfect, strong, no more throwing up and feeling yucky, heavenly body!  What a beautiful picture of God's plan.

For we know that when this earthly tent we live in is taken down (that is, when we die and leave this earthly body), we will have a house in heaven, an eternal body made for us by God himself and not by human hands. 2 We grow weary in our present bodies, and we long to put on our heavenly bodies like new clothing. 3 For we will put on heavenly bodies; we will not be spirits without bodies.[a] 4 While we live in these earthly bodies, we groan and sigh, but it’s not that we want to die and get rid of these bodies that clothe us. Rather, we want to put on our new bodies so that these dying bodies will be swallowed up by life. 5 God himself has prepared us for this, and as a guarantee he has given us his Holy Spirit.

6 So we are always confident, even though we know that as long as we live in these bodies we are not at home with the Lord. 7 For we live by believing and not by seeing. 8 Yes, we are fully confident, and we would rather be away from these earthly bodies, for then we will be at home with the Lord. 9 So whether we are here in this body or away from this body, our goal is to please him.10 For we must all stand before Christ to be judged. We will each receive whatever we deserve for the good or evil we have done in this earthly body. ..17 This means that anyone who belongs to Christ has become a new person. The old life is gone; a new life has begun!      2 Corinthians 5:1-10, 17 (NLT)

For I know the plans I have for you...

Back in October we met with the GI (gastroenternologist) in Albuquerque.  We have been working to get her to gain weight though her medications and it is just not working.  This poor child can spit up an entire feed (you should see the amount of laundry we do at times).  Well, I have been praying and praying so hard for her tummy to be healed.  With Cri du Chat kids have low muscle tone.  Well, your digestive system is made up of tons of muscles, so as you can guess, those are weak also.  She just can't keep food in her tummy.  Well, I am not sure why I have been so nervous at the thought of her having a feeding tube.  Selfishness, fear, anger that she might even have to have it, not wanting her to be so different, and all sorts of other thoughts I am sure Satan has put into my mind.  I am not sure, but it has really bothered me.  Well, as we have been approaching this follow up I have just been praying that should wouldn't have to.  Well, the other night I started to pray for the wisdom of the doctor.  When we went in today and I saw that she only weighed 13 pounds 5 oz I knew exactly what the doctor would say.  Well, instead of being afraid I was totally calm.  I kept hearing these words:

"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future.  Then you will call upon me and come and pray to me, and I will listen to you.  You will seek me and find me when you seek me with all your heart." Jeremiah 29:11-13

Well, He was right there with me because I felt a peace I could not explain.  I knew this was the right thing for her.  This little girl moves like crazy.  She loves to eat, which she will continue to do, she loves water, which she will continue to drink, and I can't imagine all she will be doing when she gets a little muscle on those skinny legs!  Thank you for your prayers and please continue to pray. 

Specifically pray for an earlier date.  Right now we are scheduled for March 27th but I really need to be able to use my Spring break as some of the time off with her because I don't have any leave and I will probably have to stay in ABQ for a couple of weeks, just to be on the safe side.  So, Team Annika prayer warriors, this is what we need, please pray!  I will keep you posted. 

She will also have a fundoplication procedure done at the same time.  You can click on the word to learn more.  This will tighten the muscle around her stomach to help keep her food in.  The feeding tube (gastro tube) will not be forever.  When she no longer needs it, it will come out.  So, that is very good news.  We will continue her therapies to improve her chewing abilities so she can feed on her own at some point.

When you give a kid a cookie...

Today I spent time making cookies for a Monday night meal I am serving in a couple of weeks (we have a ministry that serves people in Bloomfield who need a free meal once a week and it is a wonderful time).  This is my second meal to cook (with some help) and I really feel blessed being able to help.  Usually Madelynn and I are on visit/clean-up because of work, I can't cook that often.  Ok, not the point of my post here.  

So, I was making cookies today because I just feel like it is something special I can do for the people I serve to make the meal a little extra special.  And, seriously, who doesn't like a homemade chocolate chip cookie?!  Then I got to thinking about the simple act of making something for someone else and I remembered a special guy in my life as a teenager who made (and still makes) the most amazing cookies.  Gary Shaffer, you know who you are.  I am sure there are kids in the Corrales/Paradise Hills area who have wonderful memories of this special, heart-felt treat.  And I got to thinking about what an amazing ministry this was.

Now, I am sure the first time he was going to make cookies for a Young Life night he was not thinking, "These cookies are so amazing and they are going to teach these kids about the love of Christ."  Ok, if he really did think that he was right on!  But more likely it was a simple gesture to make us all feel welcome and at home as they taught many, I am MANY, kids about Christ and how to have a closer walk with Him.  I have memories of receiving cookies when I graduated, when I stopped by just to say hi and a special batch when Dad died.  Just thinking about them makes me hungry and warms my heart.   

I really don't think that Sherrie and Gary realized the impact that a simple batch of cookies (I wonder how many he has actually made over the years) would have on the lives of the teens in that area.  I know that my wonderful brother-in-law is a product of those cookies.  He is the husband, leader of his family and in his church and he is my brother in Christ because of those cookies (and all the teaching and guidance that came with them).  But that simple act opened the door for many conversations and questions and teachings that have brought many kids closer to Christ or even introduced some of them to Him for the very first time.  All because of a simple cookie.  I know that my love for studying The Word has a lot to do with the lessons I learned from them so long ago.

I know what you are thinking, "Really Kelsey, I think you are getting a bit philosophical about some cookies!"  I don't think I am.  When you spend time making someone cookies (or anything else for that matter) you are telling them, "I think you are important enough for me to spend time on you.  I value you and want you to know that you are important."  I know I could go buy cookies at the store and they would enjoy them, but I want the people I server to know that I think they are important enough for me to spend time making them cookies.  So yes, I think a cookie really can be a ministry.  I think anything God places in our life, and we do it with a heart of serving others, can be a ministry, and that we have to use it as an opportunity to tell others about the love of Christ.  
Jesus gives us an example of this in Matthew:

"For I was hungry and you gave me something to eat, I was thirsty and you gave me something to drink, I was a stranger and you invited me in, I needed clothes and you clothed me, I was sick and you looked after me, I was in prison and you came to visit me"

...."Lord, when did we see you hungry and feed you, or thirsty and give you something to drink?.....

......"Truly I tell you, whatever you did for one of the least of these brothers and sister of mine, you did for me" Matt 25:31-46

While I was reading Oswald Chambers a couple of weeks ago he talked about being spiritually exhausted.  Jesus tells us to "Feed his sheep" meaning to serve others and pour ourselves into serving others for Christ.  God will take care of renewing and rekindling us, but it is our job to "Feed his sheep" and pour ourselves out for one another.  So, I am off to make more cookies and I thank God for "cookie ministries" and all the other ways He can use us.

Team Annika Grace

Well, this is what I have been waiting to tell you all more about.  If you already follow this blog you are already very familiar with our extra special Annika Grace.  May 3-7 is Cri du Chat awareness week and we are asking our friends and family if they would like to participate with us.  There is a Virtual 5k for 5p-  and you can click on the picture for more information.

It is only $5 to register for the race and you can select Team Annika Grace if you would like to or register on your own.  Totally up to you.

In order to register, please use the link in order to register:
virtual5kfor5pminus.racewire.com

As part of our mission to raise awareness, Whitney and Beau have created an amazing shirt for Team Annika Grace so you can show your support.  Here are the shirt choices:

Shirts are $25, which includes shipping.  Please send your order to Whitney at whitney@stitchesnm.com
Make sure to include the type of shirt (Men's, Women's, or Kids) and the size you would like.  You can send your payment to Whitney (just email one of us and we will send you her address) or you can pay through PayPal at
https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=ABXSNNA6DCGHU

LOCAL RACERS - Keep checking here and on Facebook for updates.  I would like to have all those who are interested in getting together for a 5k meet at a location in Bloomfield on Sunday May 3rd to participate together.  I will let you know what is decided.

Thank you for your love, prayers, and support.

Stay tuned for more news...

Got you reading didn't I!  Well, there is an exciting opportunity to support 5p- (the genetic disorder Annika has) if you are interested.  We are working on some of our own details before we put it out there, but I just wanted to put a buzz in your ear.
Check out the link for more information:
http://www.fivepminus.org/Virtual_5k_for_5p-

It is a virtual 5K to support a great cause.  If you want to sign up you can join Team Annika Grace.  We are working to design a shirt for her team - the proceeds will go to 5p- - and getting a local group together who might want to do their 5K as a group.


We don't have everything set up yet, so please don't register yet, but we will soon.  So, as I said, stay tuned for more information!!!

Stressed?!?!?!

Sometimes I really can't believe that I am 35 years old.  I really don't feel all that different than I did when I was 25 years old...
                   OK, well let me think about that one for a moment, at 25 years old:

I was at least 10-15 lbs lighter

I had only been married for 2 years 

I had only taught for 4

No kids

Full night of sleep most nights

Exercised everyday

Probably walked 20+ miles a week

Had just started coaching - and still worked out with my athletes

Money wasn't really that tight

We were still learning how to be married to each other

Well, I guess things have changed a bit in the last 10 years, but really when someone asks me my age I am almost surprised when I have to say 35!

If I admit to myself that things have changed, then I realize that I probably have more stress in my life than I want to admit.  What does stress do to the body?  According to WebMD, stress can lead to physical symptoms including headaches, upset stomach, elevated blood pressure, chest pain, and problems sleeping. Research suggests that stress also can bring on or worsen certain symptoms or diseases.  Of course there's also weight gain, skin conditions and the list continues.  

I would say we probably have a little more stress in our lives at this time (and we would just by adding another child to the mix).  I don't really think of myself as stressed, but I am seeing the effects of stress on my body - things are just not working like they used to.  So age and stress are already taking a toll.  

So, what can I do about this?  Well, I have been trying to work out (let me just tell you a little story about what that looks like:

Doing a video at the house the other day.  Madelynn starts to work out with me, gets bored and stops.  She goes to get a notebook and pencil and proceeds to walk around me as I am working out - taking notes.  Then she tells me, "Mom, the next time you lunge you need your knee to go lower. "  Gee, thanks honey.  Then she says, "When the siren comes on you need to go as hard as you can."  Yes, d-e-a-r, thank you.  She shows me the notebook at the end and says, "This is how many you did this time.  Apparently, that is better than the last time."  Honestly, I don't know where she gets this stuff from.)

But, I am trying to workout more.  I am working on getting to bed earlier and we are trying to eat healthier.  We try to take advantage of time alone the best we can.  Sorry, one more caveat:

I truly believe that parents need to take time for themselves.  I know it is difficult and time and money don't always help with this, but it is so important.  So, if you are the parent of a special needs kid I think you need to multiply that importance by about 100!  There is just an extra level of stress there that others don't have and can't understand.  If you are reading this and you have a friend who is a special needs parent (no, you don't all need to call me to help me babysit) but please think about a way you might be able to help give them some time alone.  We are very blessed and so have a great network of people - you guys - who help us.  And I am not shy to ask.  I know it is good for me, my husband, and my kids.  Just one of my opinions.  I am working to teach my friend who has a special needs child how important this is.

Needless to say, I can't take all of the stress out of my life, so now what.  Where do I go to for my strength and stress relief?  

"I lift up my eyes to the mountains - 

where does my help come from?

My help comes from the Lord, 

the maker of heaven and earth.

He will not yet your foot slip - 

He who watches over you will not slumber."

Psalm 121:1-3

"Praise be to the Lord, to God our Savior, who daily bears our burdens" Psalm 68:19

He doesn't bear my burdens the first time I pray for them and then forgets.  He doesn't have a punch card and if I have already prayed about that burden 10 times then I am at my limit.  NO, he bears them DAILY, he will not forget about them, he will continue to work on them if we continue to trust him.  When I am feeling the stress and burdens that lie ahead of us - the unknowns, possible surgeries, development, health, care....the list goes on - I need to physically turn my eyes to the hills knowing that He's got this.  He created heaven and earth, this is not a problem for him.  And guess what, he can handle me coming to Him and saying, "Lord, I am stressed, please take my burden."  He is probably thinking, "I didn't ask you to hold it on your own in the first place."  In fact He tells us, 

 "Come to me, all you who are weary and burdened, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in hear, and you will find rest for your souls.  For my yoke is easy and my burden is light"  Matthew 11:28-29

He walks along side us and takes that stress, but we have to come to him.  So, how has my life changed now that I am 35 years old?

I am a bit heavier

I have a beautiful 4 year old that keeps my on my toes daily and brightens my day

I have an amazing 1 year old who never ceases to amaze me and has changed our family in ways I couldn't have imagined

I miss my dad daily, but know right where he is

I sleep less and exercise less

I hug longer and smile more

I am quicker to turn to the Lord for my concerns, stresses, and praises

I know that MY plan for life and happiness is not the same as God's

and His is much better

I love my husband even more today than I did 10 years ago

and I love the way he loves our little girls

I know life is very short and I must make the most of every moment

I know that tomorrow is a new day and I can start fresh

Here's to all the blessings, stress, tears, laughter, love and excitement in the next 10 years