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.  

  

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...

A different song

 This may be my new favorite quote when I think about Annika and just how I approach life.  I know I have been teaching for quite some time now (almost 14 years and I am not sure how that is possible)and I know that each of my students are different and unique.  But it just brings it home when it is your own child.  It is amazing to watch all the wonderful things Annika is doing already, when doctors and websites said she wouldn't, just to her own music.  That doesn't mean that sometimes I don't find myself trying to get her to dance to the same song "typical" kids seem to be dancing to, but I catch myself and remember to tune into her station.  Sometimes I forget that she is even listening to a different song until I see the look someone gives me when I am holding her like an infant and say she is 15 months old.  All of a sudden I am crudely aware that our music is nothing like their child's and it catches me off guard.  I feel defensive for a moment or that I need to tell people right away that Annika was made extra special, but I just need to remember that it doesn't matter what they think or see, she is our perfect gift and such a blessing.

This book was given to us by the wonderful family that we met in ABQ over Christmas.  I absolutely love it and I am thankful Angie got it for the girls.  In case you don't get to read it, it is about a giraffe, Gerald, who can't dance and everyone makes fun of him.  Then he finds his own music and he starts his own amazing dance.  Isn't it funny how in life if we stop trying to copy someone else's dance we find our own moves and find that it is so much more fun that trying to fit into another song.  This is what God wants us to see in our lives.  

He has a different song for each of us because each of us are "...fearfully and wonderfully made; your works are wonderful, I know that full well" Psalm 139:14

Finding our dance is not always easy.  I distinctively remember what junior high, and even parts of high school, felt like.  I know I kept trying to dance like others and tried to fit into their lives, but it took a HUGE change in my life - well for a high schooler it felt huge - to start to find my own moves.  I had to switch from Cibola High School to Valley High School and that was so devastating to me at the time.  Looking back, I am able to see that this was a turning point in life that allowed me to dance to my own music.  

So special needs or not, we all have a tough time finding our music and this has been a reminder of this fact.  Find your dance, feel your music, and let the Lord lead you where He wants you to go and you will be amazed at how great life can be.  And if you start to feel down or have a tough day dancing, come hang out with Annika for a little while.  You can't help it but have a smile on your face when you are with her. 

Thank you Lord for crying kids..

Thank you Lord for crying kids, even in the middle of the night, because it means I have kids.  There are many out there who would love to be in my shoes.  Thank you that I have kids who need me because one day they won't, as much.  Thank you for reminding me of all my blessings, even though they can make life messy and crazy and sad and busy, they make my life LIFE!  And I am so very blessed.  Thank you for reminding me Lord of all you have given me.  Kids to take care of, a husband to love, good food to eat so there are dishes to wash, nice clothes to wear that I now have to fold, and so many other amazing blessings.  Thank you Lord for these reminders of all my blessings even though I am tired at times.  That is all for today :)


Okay, as I am writing this post I am remembering a song I used to play on the piano, Thank God for Kids by the Oak Ridge Boys.  I loved this song as a kid, but now that I am a parent it has even more meaning.  The lyrics are below.  All those things we as parents complain about and dread go along with all those wonderful things that make life exciting when you have a child (or a child that is part of your life).  Read through the words and thank God for all those little things in your life.

"Thank God For Kids"

If it weren't for kids have you ever thought
There wouldn't be no Santa Claus
Or look what the stork just brought
Thank God for kids.

We'd all live in a quiet house
Without Big Bird or a Mickey Mouse
And Kool Aid on the couch
Thank God for kids.

Thank God for kids, there's magic for a while
A special kind of sunshine in a smile.
Do you ever stop to think or wonder why
The nearest thing to heaven is a child?

Daddy, how does this thing fly?
And a hundred other wheres and whys
I really don't know but I try
Thank God for kids.

When I look down in those trusting eyes
That look to me I realize
There's love that I can't buy
Thank God for kids.

Thank God for kids, there's magic for a while
A special kind of sunshine in a smile.
Do you ever stop to think or wonder why
The nearest thing to heaven is a child?

When you get down on your knees tonight
And thank the Lord for His guiding light
Pray they turn out right.
Thank God for kids.
Mmm, Thank God for kids.

Kelsey, did you know?

I love this time of year.  I have started up the Christmas music and it just puts a smile on my face.  While traveling home from ABQ the last time a beautiful song came on by Amy Grant - Breath of Heaven

Do you wonder as you watch my face

If a wiser one should have had my place?

But I offer all I am

For the mercy of Your plan

Help me be strong, help me be, help me

Breath of Heaven, hold me together

Be forever near me, Breath of Heaven

Breath of Heaven, lighten my darkness

Pour over me Your holiness for You are holy

I began to think about Mary holding baby Jesus, looking down at him and all that he would become.  Growing up, Whitney and I sang the song Mary Did you Know and it still brings tears to my eyes today.  I thought about how she must have felt kissing that little baby, knowing what he would go through as he got older.  You know, we think about Jesus as a baby at Christmas and as a man at Easter on the cross, but can you picture that little baby hanging on the cross for all of our ugly sins?  I can't imagine how that would feel as a parent. 

We always want to be able to protect our kids from pain, suffering, ridicule and everything else the world can dish out.  Mary held her little baby and knew there was nothing she could do to protect him from what was to come.  I started to think about why God chose Mary and why he chose me to be the mother to Madelynn and Annika.  Was there something extra special about her?  Did she have some special connection with God?  Why was she the chosen one?  Why was I chosen to have this extra special child.  I hear those words by Amy Grant, "Do you wonder, as you watch my face, if a wiser one should have had my place?"

I think that no matter how our children are abled, we have moments in raising them that we think, "Are you sure I am the right one for this job, God?"  Well, just as I was thinking about all of this guess what the sermon was about on Sunday....Yup, Miss Mary herself.  

As I sat there and listened to Pastor Monty talk about Mary receiving the news and listening to the angel I realized that what was special about Mary was her obedience to God.  Did she have a few doubts about the information she was receiving, heck yeah!  But, did she let that hold her back from the amazing things God had in store for her, NO!  Her response,

 "I am the Lord’s servant,” Mary answered. “May your word to me be fulfilled.” Then the angel left her." Luke 1:38

Mary didn't posses any powers, she wasn't part angel, she was just like you and me, but she was willing and ready for whatever God had in store for her.  Once she got over her bit of doubt she was ready to go.  I am not sure I can always say that.  If God sent an angel to me right now and told me what he wanted me to do would I be that obedient?  Do I have a heart that is tuned to God, spending time with him everyday, getting to know his voice so that when he calls I would recognize it and be ready?  

When I look down at Annika and kiss her face, I can't even imagine what God has in store for her.  I can't see all the ways he is going to use her little life to show his face to those around us.  When I hold her in my arms I wonder why God chose me, but I know I am his servant and ready for whatever he has planned for our lives.  So, I pray that my obedience will allow God to use me however he sees fit, and I know that through this I will experience the glory of God first hand and in ways I can't even imagine. 

The difference a year can make

October 12, 2014

A year ago today I was still very pregnant; we were all so excited for sweet Annika Grace to arrive (now that we had finally decided on a name).  When I pictured my sweet girls playing together it just warmed my heart. I could see their two little blonde heads running down the street and having endless conversations together.  I dreamed of my sweet baby’s life to come.  What would she be?  What would her first words be?  I thought about how it would look when she smiled and laughed at me and how I knew it would melt my heart.  I pictured her and Madelynn being as close as me and my sisters; all the laughs and cries they would share together. 

At this time last year I still held those dreams close to my heart and had no reason to think otherwise.  Why wouldn't this little one be just like my Madelynn.  Yes, I knew they would do things differently and have different ideas and personalities, but for the most part, I could see their lives, parallel to each other, as they would grow into amazing women. 

At this time last year, this is what I was still dreaming about.  As I pictured her turning one I could see her crawling or even walking like her big sister.  I dreamt of hearing those words, “Mamma”.  My heart was full, and I had no reason to think different.

The day came a little earlier than I had planned, but I was not worried, I was getting the drugs this timeJ!  Once things got moving it didn't take long at all, and just before midnight on October 19^th there was my little girl.  All those dreams because a reality right there in that room.  I held that tiny baby in my arms and could see all that I hoped for her flash before my eye, because I had no reason to think otherwise.

Days and weeks went on, and things were not quite the same.  I still loved my sweet girl so much, but the endless crying made it very difficult to be happy.  When she was a month old I took her to the doctor.  I figured he would give me some magic drug to make her happy and the crying to stop and life could pick up pace again.  As I stood holding my very tiny one month old all those dreams I had in my head and in my heart came crashing down as I heard the doctor say, “I think she has a genetic disorder called Cri du chat.”  As he showed me pictures and read me the symptoms I felt the room getting smaller and my throat constricting tighter.  What?  This is not what I dreamed.  My daughter is not going to be different, she is just fine, she is just small.  She is going to be big and strong just like her sister; just like her cousins.  What?  She may never walk or talk?  I may never see her run and play soccer or say those words I have dreamed of hearing?  This can’t be.  No, she just has colic and then everything is going to be fine…..

And then I left his office and life went on.  We were in the trenches of colic, a baby that didn’t eat well and wouldn’t gain weight, and spit up.  Genetic disorder???  We didn’t have time for that.  We were just trying to survive the day.  And time kept going on.  We met with a geneticist who agreed with her doctor, but our questions where still about daily life.  Help her to be happy and keep food in her tummy.  Help her to grow.  She was meeting milestones and we really didn’t see a difference.  Everything was going to be fine….

Before we knew it we were running around to OT (occupational therapy), speech (for swallow therapy), chiropractor, ENT appointments, dietitians and the list goes on.  We were in the daily scramble of having a child with special needs.  We didn't even have time to really process what all that was.  People would say, “I am praying for you.”  I would smile and say thank you, but I really had no idea why.  Why were they praying for me, for us?  Were they praying to “fix” Annika?  Were they praying that she would “get better?”  I truly didn't understand what they were praying for, because I didn't see anything different about us.  I just saw us in life helping our daughter the best way we knew how.  Maybe they were praying for our sanity; that I could use on a daily basis. 

As her birthday approaches I am taken back to how I felt this time last year.  All those hopes and all those dreams changed and flipped upside down.  All those ideas about how the world measures happiness, gone out the window.  Some days I find myself needing to defend my daughter as people’s eyes question me when I say, “She is almost one.”  I see the looks on their faces as they think, “She is so small, why can’t she sit or stand or crawl?”  “What is wrong with her?”  They don’t say these things but their eyes do.  I smile and say, “God just made her extra special.”  Well, He did and I truly believe that.  I know He made her just the way she is supposed to be.  Often people will say, “God gave her the perfect parents.”  I know he chose us for Annika, but sometimes when people say this I feel like they are saying, “Wow, better you than me.”  And it is true; I wouldn't change her for the world.  I remember my past principal telling me, “I wouldn't wish it upon anyone but I wouldn't change it for the world.”  (He had a son with down syndrome).  It is so true.  But I still feel a little jealous as a baby who is younger than Annika is crawling around and smiling and laughing and making eye contact.  When I think about her going to school and try to imagine what that will even be like.  When I think about the fact that she will FOREVER live with us. 

And then all that anger and frustration and jealously melts away and she curls into a ball in my arms laughing so hard.  I see the happiness in her eyes as her big sister climbs into bed with her and they start the morning laughing together.  When she wraps her tiny arms around my neck and give me a slobbery, open mouth kiss on the cheek, there is really nothing better.  When she reaches a milestone it is so exciting I want to shout it from the roof top.  And, even though I have no idea what the future holds, how long her little life will be, or what challenges we will be faced with, I know one thing for sure; I know where my little girl will be for eternity and I will see her there.  I know God will take care of her and that He has created her for a special purpose.  We have our challenges here every day; they usually consist of trying to get some sleep and trying to keep food in her.  But we will overcome because God has overcome this world.  He has overcome stomach problems, He has overcome the sleepless nights, He has overcome Cri du chat.  He wears the victors crown and I am reminded that all of this is temporary and I will live in eternity with my sweet girls, seeing them laugh and praise Jesus just the way they were created to do.  I never have to worry about Annika; God has taken care of that. 

So, my sweet baby is almost one.  This is not how I pictured our lives a year ago, but here we are and we are so blessed.  

Parenting Guidelines....continued

Some of my friends commented on this, but I was really hoping to hear from more so if you would like to add to this list please feel free to send me more advice to add.

1. Go with your instincts
2. Never be too busy that you can't stop to be a super hero or have a tea party or read a book
3. Build a strong marriage...that builds strong kids
4. Your children are not a situation - so cultivate a attitude of sacrifice
5. Notice your children when they come into a room and let them know you are happy to see them
6. Each child is different and has unique needs for love, affection, and discipline
7. Love your kids in a way they can understand
8. Make eye contact
9. Hug them like you mean it
10. Never say never about something your kids might do....Just be ready to handle it and love them when they get off track.

I hope this list will continue to grow as others have time to add onto this. What great advice from some amazing people.

Do you have guidelines for childraising?

What, Mom? I'm not doing anything wrong.

"Madelynn, don't stand on that chair"

I can still hear the words I was saying in both of these instances. One thing I found amazing as Madelynn has grown is how quickly the disciplining has started. She is just a little baby and we already have to think about how we respond in certain situations and the lessons we are already teaching her. Before she was born I probably had four books next to my bed that I would read about what to expect and how to laugh through it and how to be prepared, but then once she was born we just went with the flow each day. I never really thought about or wrote our what my goals were.

My Bible study the other day was about guidelines for parenting and in it I was encouraged to write out 5 Guideline or Rules for Childraising. I had never thought about this before or even tried to put them into words. So this is what I came up with so far:

1. Never make a promise or threat you are not willing to go through with (this was advice Bruce gave me when I first started teaching and I think it still applies)

2. Start training your child early in the way you want them to go (Proverbs 22:6)

3. Don't sweat the small stuff --- Choose your battles

4. Make your kids a priority everyday

5. Treat your kids with respect, as people, not as equals, but respectfully ( I feel this is somehting my parents did very well when they were raising us and in turn we respected them)

I asked Bruce what his 5 would be. He had trouble coming up with some. He shared my 1st one (I guess that is ok because it came from him in the first place). I hope he has some I can post in the next couple of days.

I would love to hear from you guys. Even if you are not a follower on my blog, email me some of your guidelines and I will complie them into a list. I am sure over the years my list will change and grow, but there will always be a basic foundation that I am sure we will try to follow.