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.