Wednesday, December 17, 2014

Prayer request

It has been on my heart that Annika may need a different type of care.  She is VERY well taken care of at her sitter's house, but she does so well at our house.  Each morning I usually have to wake her up to go and she is finally sleeping so well at that time.  So, my prayer that God has put on my heart is to find someone willing to do "At home" care - at my home - a few days a week (or whatever works best).  I would love someone who could come there in the morning, be with her, do therapy with her and just love on her (and maybe I could even pay a bit extra to clean up the house some :).  So, prayer warriors, this is my request so if you think about it please be in prayer for the right situation for our family and whomever God will bring into our lives.  He has always provided just the right sitters at just the right time for us and I know that if this is in His will He will lead us to that person.  Thank you in advance.

Overwhelming joy

Do you ever just have that moment when your blessings come flooding in and you can hardly breath?  As I am getting ready for Christmas and experiencing all these wonderful traditions and memories with friends and family I find myself overwhelmed with joy at all of the blessings in my life.  Friends who are willing to help with simple things, like take my kids for an hour or clean up my kitchen after a party, people who call just to say "Hi" and and "I love you", a hug from my daughter after a fun day together, a kiss on the cheek from my husband because dinner was good, a smile and full-belly laugh from Annika as she is playing, simple things that make up a full, joyful, blessed life.  There are moments when I begin to reflect on all of these blessings that I feel a catch in my throat and tears welling up in my eyes because God is good.  In all situations, if we choose to see it, in all areas of life God is good!  I am so lucky to have all that we have and I am so thankful for all God has given me that I could shout from the mountain top!  Enjoy your blessings, count them one by one....

Thursday, December 11, 2014

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.

Tuesday, December 2, 2014

GI in Albuquerque

Last week we had a follow up appointment in Albuquerque with the pediatric GI specialist.  He said that her test results looked good (she had a scope and biopsy a couple of weeks ago).  The tissue looked good but he did see a bit of inflammation.  She is on a different reflux medicine (Previcid) and he changed her to Neocate formula.  If you are on Facebook you saw my post about the wonderful gift we received from the doctor.  About 30 cans of free formula; praise God because that stuff is expensive!!!  She gained 1/2 a pound in a week - huge deal for us.  We will watch her for about 4 months or so and see how she does with weight gain and spit up.  If she is still having trouble he will run a probe down her nose into her stomach for 24 hours.  It will record how often she refluxes, how high it goes and the acid content.  From there we will decide what needs to be done.  Prayers please that the medicine and new formula are enough and that she will continue to get stronger and develop those muscles so she won't have to have any procedures done.  She sure has been happy since we changed her formula so that is very exciting.  Thank you for your love and support!

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. 




Friday, November 28, 2014

His purpose is greater than our fears

Sometimes I let my mind wander, and, let's face it, that is never a good thing.  I start to worry about what will happen in the future.  What if I die, who will take care of Annika?  What is someone tries to take advantage of her weaknesses (or Madelynn for that matter)?  What if I can't help her be the best she was designed to be?  I start to get scared and wonder why God trusted me with her and with Madelynn.  Then I have to stop, reign myself back and and remind myself that, He has plans for me, "plans to prosper and not to harm you, plans to give you hope and a future." Jeremiah 29:11

I remind myself that HIS PURPOSE IS GREATER THAN MY FEARS!  He has a purpose in giving Annika to me, He has a purpose for her being born at this time and in this world that we live in.  His purpose is greater than any fear I could have.
"For my thoughts are not your thoughts, neither are your ways my ways," declares the Lord.
"As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."
Why do I even start to doubt?  I know that God will take care of her and take care of us.  He has a plan, He is sovereign and all I have to do is trust.  So when I start to feel the doubt and fear coming on, because I know it will - I am human - I have to run to Him, trust Him and remember always, that HIS PURPOSE IS GREATER THAN MY FEARS.

Tuesday, November 18, 2014

My Daughter is....

My daughter is beautiful and sweet.  She loves the sound of her sister's voice.  She loves to play with beads and necklaces and things that make "clinking" sounds.  She loves to roll and get the picnic basket toy from across the room.  She is happy when she is being held but she also likes to be independent.  She thinks it is funny when you hang her upside down.  She is delicate but also tough and can withstand therapy, people poking and prodding her and endless days of spitting up.  She is my joy everyday and she is a sweet smile in the middle of the night when I am so tired I can barely stay awake.  Sometimes I talk to so many doctors and therapists that I feel like all I focus on is what she can and can't do at this point in time, how well she is eating, what to feed her, how I should feed it to her, how she is sleeping and the list goes on.  But she is so much more than all of that and that is what I need to focus on.

Friday, November 14, 2014

Another great blog to share

My sister sent this great article to me the other day and I wanted to share it.  It is really fantastic.
Click the picture below to read this mother's words about her son.

When a Cashier Reminded Me My Son Has Down Syndrome




Thursday, November 13, 2014

Getting to "that place"

I know I have been pushed more emotionally, mentally, physically, and spiritually in the last year in ways I didn't even think was possible.  There have been those moments of extreme joy and happiness, but there have also been those moments where I have questioned God and His purpose for me.  There have been moments that I am so thankful that my kids have two parents because I am not really sure I could have gone one.  I have had to find ways to regain my strength in Christ and refocus my attention on what He has planned for me.  This is a GREAT blog post on just that!  Lisa is an experienced mother who explained exactly how I felt.  I am sure many of us have been in this spot.
Click on the picture below to read the article.


Sunday, November 9, 2014

Reaching out...

video
I totally need moments like these where I can see our sweet Annika responding and really interacting with us.  I watch this video over and over again and it just makes me smile.  I need this some days, because there are those other days where I just can't help feeling sorry for m self.  I really don't mean to and then I feel so guilty when I do.  Like somehow I don't appreciate all that I have, and I truly do appreciate everything God has blessed us with.  But there are those moments when my guard is down and I just feel sad.....
I sat and watched a little girl, younger than Annika, toddle up to her mom the other night, reach out her arms to be lifted up and then nuzzle into her lap and I couldn't help it but my heart just sank a little.  Would I feel that?  Will I have that moment when she looks at me and I can see that she knows that I am her mama?  I laugh it off at times when I know there are just things that she can't, and probably will never be able to do in the same way "typical" kids do.  At her audiology appointment the other morning some of the test were way beyond her developmental abilities and I just laughed it off knowing it really wasn't that big of a deal.  They were able to get the info they needed.  But as I walked to the car I remembered taking Madelynn to that same test and the technician just kept bragging about how well she had done for her age and I felt proud.  So, did this mean I wasn't proud now?  Then I just get frustrated with myself for letting these thoughts come to my head.  
So, as I drove back to work I just let the tears roll down my cheeks and for a brief moment I just felt sorry for myself.  I thought of my sweet baby and I wondered if she would ever lift her arms to be to be picked up and my heart tore out of my chest.  I could just see her laying in her bed and thought, "Baby, just life your arms to me."  Then as I started to come back to reality I realized this is probably how our Heavenly Father feels as he looks down at us.  As we struggle, stumble, skin our knees and keep trying to do it on our own.  We don't look up at him, we just keep focused on the task at hand and he looks down and us and says, "Child, just reach your arms to me.  I will hold you.  I will take your burdens and make them mine."  And I am sure his heart breaks as we just keep on and he wants so bad to comfort us.
So, I know the only way I can get through these moments is to lift my arms to Him and turn to Him for the comfort I need.  And then He blesses me with these moments, when Annika claps, kisses us in her own way, or nuzzles her head in our neck to say, "I feel your pain child.  Here is a little gift to let you know I understand and your child loves you in the most amazing way you will probably never understand."  At least that is what I feel He is saying to me in these special moments of life that I may have just passed by before.

Friday, October 31, 2014

Needing a picture




There is nothing Annika loves more than her big sister and I truly believe that there is no better therapy than the two of them playing together.  Madelynn is the biggest advocate for Annika.  She watches out for things she might be allergic to, she encourages Annika to do things for herself and she makes her smile everyday.  Madelynn picks her up and carries her everywhere and I figure protecting herself is great therapy for her.  I know they will be the best of friends for life!

Constant experimentation...

About 3 weeks ago we found out Annika was allergic to milk and soy.   What have I been feeding her for he past year....ding, ding, ding, you guessed it MILK and SOY!  I was feeling like an awesome mom.  No wonder she has been throwing up her entire life and have barely double her birth weight.  It made me so sad that I had been doing this to her.  But I had to get over that and figure out what to do next.  I hate those "special" formulas that cost a fortune (unless of course I had no job then the government would pay for the, but because I have decided to help other kids, we would have to pay for it ourselves --- great system!) they stink and smell like dog throw up!  So after talking to my friend we decided to try coconut milk.  And as luck would have it, she loves it.  After 2 weeks on it though she really isn't gaining weight.  This always stresses me out!

Well, we finally made it to the GI in Albuquerque (I have been wanting this appointment for MONTHS).  He was not quite what I was expecting, but he did have a different insight to her throwing up.  He thinks many kids are misdiagnosed with reflux and really have esophagitis (inflamed esophagus).  So, back to the drawing board.  She will have a scope and biopsy in 2 weeks to confirm and them we will start treating with foods and medicine.  I have definitely found that the more specialized doctors get the less bedside manor they have.  I know this guy can help us, but I just wanted him to care a little more about what we had been trying instead of insulting our efforts and our choice to put her on a medicine that can be harmful.  This is when I am thankful that Bruce is in these appointments with us.  His response, "Well, we either put he on the medicine or she would have starved to death.  What would you choose?"  I love that man.  And he is sooo right.  Well, in his flippant tone he mentioned that the coconut milk didn't have enough protein.  Even though I felt a bit defensive at first (and he just like all the other doctors really had no suggestions for us) I realized that I could figure out ways to get more protein into her.  So, here we go again, trying something else.  Chicken, eggs, quinoa and beans.  Luckily she is such a good eater and she seems to like everything we have tried.  I guess we will see where we are in another couple of weeks.

As my uncles and dad would say, "That license on the wall is to PRACTICE medicine, they are experts either."  Boy have I seen this in the last year.  I feel like have have to constantly research and talk to other people to figure out what might help my kid.  Shoot I am going to be able to go into the medical field by the time she is grown (I actually am thinking of a second career already---but that is a post for another day).  I am thankful for the times we live in and that the "experts" are just a short drive away, bu sometimes if feels like an uphill battle.

So onto the next experiment.  All I have to say is, at least my little girl is happier and that makes me happy!

Monday, October 27, 2014

The little things are big

I remember being at a cheer leading exhibition (I know, me at cheer leading but I was supporting a friend's kid) and Madelynn was sitting in my lab and for the first time she started clapping.  It was exciting, and I was worried that she was clapping at cheer leading (well, now when you ask her what she wants to be when she grows up she says a cheer leader and a dancer----trouble :) ) That is about all I remember about the experience.  From then on she clapped.

Well, Annika has given me a different perspective on the little things, that really don't seem so little anymore.  As we sat in the living room as a family I told her, "Clap Annika" and waited a few moments.  She started to bring her hands together and apart and together.  I couldn't believe what I saw.  "Bruce, look at this!"  I told her to clap again and it took a minute but she did it.  With tears trickling down my cheeks I saw that she really is in there hearing what we say.  (Yes, I knew she was but when you don't see those responses that other kids tend to give it is hard to tell and can be a bit discouraging).  I tried to get it on video, but of course, like all kids, she would not perform for me.

That little gift was so special and gave me more of a connection with my sweet little girl.  She does respond to our voices and laughs at her sister, but this is one of the first times she responded to directions and it made my day.  I can't wait to tell her therapist today!

Thank you God for the little things that seem so big.  Thank you for reminding us that you care about the small things in life and you know what we need, even if it is seeing our child clap their hands or give us a slobbery kiss.  You are sovereign and holy and I praise you for all that you do in my life everyday.  Thank you for the gift of Annika to remind me of this.
Amen!

Monday, October 20, 2014

Amazon Smile, social media, and email alerts

I have to admit, I love shopping on Amazon.  I have always had great service and my products arrive quickly (usually).  It is great when I have gifts to send to Alaska....shipping there is very expensive.  Well, I recently learned about something cool.  AMAZON SMILE.  They donate to a charitable organization of your choice.  It is not very much (.5%) but I figure every little bit helps.  So, guess what, you can set your Amazon account to donate to the 5P society (Annika's disorder).  If it is a site you use, I just thought I would pass this on in case someone else might be interested.  I just Googled Amazon Smile and there I was able to type in my organization (5P society Lakewood, CA).  Now each time I go to Amazon to order - which is often - I make sure it says Amazon Smile in the upper left corner and I can help out a little.  Every little bit helps to get the word about about this syndrome.  Lack of education is one of the biggest problems.

Not that educating people helps our kids, they are who God created them to be, but it may help other kids who need to be diagnosed.  We were very lucky with Annika because we have known since she was about a month old.  Many kids are 2, 3, 4 and even older before they even find out.  There is a lot of misinformation out there about 5p- and many doctors don't even suggest to parents to have their kids tested.  So they are left with a guessing game for years trying to figure out how to help their child meet their potential.  We are lucky that Annika has been receiving services since she was about 5 months old and we are already seeing amazing things from her.  So, you can see why education is so important.  We want 5p- to be as known as down syndrome; that people know what signs to look for and can get help for their kids right away.  Plus, many doctors are giving parents antiquated information and the picture is grim.  I have learned one thing from Facebook....it is great if you have a child with a rare disorder.

It makes you feel a connection that is so important.  Once we received Annika's diagnosis I reached out to parents on this Facebook page and found parents right here in NM with in a couple of hours.  It was amazing how excited this made me feel.  All of a sudden I wasn't alone.  (I know I had and have tons of people who support and love us).  But I had a connection to people who were going through the same things as me.  I have had the opportunity to reach out to other parents when I have questions, I celebrate successes with them, and I have made friends as close as ABQ that I am able to call when I have questions and need support.  I never thought I would say social media is awesome, but it is so amazing.  I received more information from Facebook than I ever did from a doctor.  Parents know more than the doctors do.  The information in the books and web site are useless and discouraging.  There is information telling parents that there kids will never walk, talk or be able to learn.  What horrible words to hear about your child that you love no matter what.  Well guess what, through Facebook I have seen kids who can talk, walk, run races, ride bikes, read flash cards, go to prom, and smile and laugh in a way that melts your heart.  So, one point for social media.

Ok, one more thing.  I figured out how to put a choice on my blog where you can sign up for email alerts.  I used to send an email when I made updates but I don't want to bother people who are not interested (which is totally fine).  So, if you would like to follow our crazy life and maybe pass some of this info on to someone else who it might help, please sign up for email alerts.  I think it works.  I tried to sign myself up so we will see what happens.

Thursday, October 16, 2014

Joy through the Cri

My original purpose for this blog was to write about my 1st child and the loss of my dad, and although I still have thoughts to share about that, it has taken on a new purpose for my life.  Joy through the Cri is how I see my life at this time and for the future.  We have had a lot of tears in the past year (well the past 5 years) and through each of those experiences I know I am stronger and closer to the person God has created me to be.  He has purpose for each of those troubles we have all gone through.  

The first time I heard the words Cri du chat I felt a piece of my heart break.  It was all I could do to hold myself together in the doctor's office as he told me.  But as I got to my car I let my heart break wide open, right there in the front seat, knowing that God would pick up the pieces and put it back together.  "Call on me in the day of trouble; I will deliver you and you shall glorify me" Psalms 50:15.  So I cried out to the Lord to comfort my heart and help me to see HIS purpose in all of this.  I felt sorry for myself that I would never see her walk down the aisle, that I would never see her have kids and many other worldly dreams.  As I started to drive home (after I called Bruce and regained some composure) I was stopped at a stop sign and these are the words I heard coming from my radio - 
Staring at a stop sign
Watching people drive by
T-Mac on the radio
Got so much on your mind
Nothing's really going right
Looking for a ray of hope
Whatever it is you may be going through
I know He's not gonna let it get the best of you
You're and overcomer
Stay in the fight 'til the final round
Your're not going under
'Cause God is holding you right now
You might be down for a moment
Feeling like it's hopeless
That's when He reminds you
That you're an overcomer

I was reminded right then and there that God had created Annika, and all of us, for a higher purpose.  Not that I didn't feel sad or even cheated by the things my daughter would miss out on in this world, but I realized that the things of this world are temporary and our reward is in heaven and that is more important than anything this world has to offer.

Sounds like I totally have it together at this point.  So not true!  There are some days my heart breaks wide open again and I have trouble catching my breath.  So I cry out to the one who is greater than me and is greater than any genetic disorder (as the world says) and I hold to the truths that He has planted in my heart.  "Hear my cry, O God; Listen to my prayer.  From the ends of the earth I call to you, I call as my heart grows faint; lead me back to the rock that is higher than I , for you have been my refuge, a strong tower against the foe......" Psalms 61:1-5

So, this is my Joy through the Cri.  Please join me if you would like to take this journey with us.  I know God will bless you in ways you haven't even imagined because that is what he has created us for.  I know my sweet Annika has a very special place in this world and at this time in history.  So, grab a Kleenex, wipe the tears from your eyes and see the joy and hopefulness and love surrounding you and your life and the fact that you get to have Annika as part of your life; because that is exactly how we feel. 


Wednesday, October 15, 2014

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 19th 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.  

A new journey

It has been quite some time since I have posted.  This blog has begun to take on a new purpose.  I am no longer a coach and my life is very different from that of a coach or a coach's wife.  So this will now be about my journey as a mom of a wonderful, energetic Madelynn Ruth and her sweet, loving and special Annika Grace who has been diagnosed with Cri du chat.  If you would like to read more about this you can go to the 5p- society page.  It is a very rare genetic disorder with a range of symptoms.  So this is the new path God has placed us on and here are some of my thoughts, fears, joys, anxieties, and feelings.  So, welcome and feel free to ask me any questions you may have.

Friday, January 3, 2014

We made it to 2 months...

...now if we could make it to 7 pounds. It has not been easy, that is for sure, but I know we will soon forget about these difficult days. Colic is an evil thing and I am really not sure why God allows baby's to have colic, but we will all survive, I hope. Annika Grace is already 2 months old but pretty much looks the same and weighs the same as she did at 1 month. She had to go on formula to gain some weight and it finally up to 6 pounds 8 ounces. She is getting happier all the time and loves playing with her sister. That is one thing that usually makes her happy. We are even getting a little hint of a smile these days. She is starting to "talk" and have some "conversations" with us which is so much fun. I love watching my two girls together. They are in the same room now and the other day I went in and Madelynn was in the crib with her trying to get her to stop crying. It was so cute. She loves her baby sister so much. I know she will always watch out for her (and I am sure there will be plenty of fighting along the way but I will just enjoy the happy moments for now).


Her hair looks very red in this picture, it does have a hint of red but not this much usually.  I love watching her little personality develop and feel so blessed to be the mom of two wonderful girls.  I look forward to seeing what 2014 has in store for us.  God is good and I know He has big plans for all the changes we are going through.  I pray that I am ready when He calls me.  I can't imagine the adventure this little one is going to take us on; it has already been quite a ride.  Good thing she was 2nd :)