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.

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.  

  

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

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.  

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)

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!!!

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. 

Feeling like I belong...

I had such a wonderful experience over Christmas of getting to meet someone in the exact same position as me.  I met a delightful family in ABQ whose son has cri du chat.  He is 2 1/2 and so happy and loving.  I have felt ok, most days, since Annika's diagnosis, but there is something about being in a room with someone who has actually walked in your shoes that makes you feel so comfortable.  We have not had all the exact experiences, no parent does, but we had enough similarities that it just felt good to be in their presence.  They have been at this longer than me so it was very encouraging to see Tyler crawl across the floor and pull himself up and all the other wonderful things he was doing.  It was interesting to share stories about when we first found out and our different experiences with doctors.  I know that our kids will not be the exact same and there will be things that each of them do differently than the other, but there was a sense of belonging that I had not had since Annika was born and I liked it.

I remember reading this letter when I first found out about Annika and it tore my heart out.  Now looking back a year later I decided to read it again.  It is so beautiful and so true about all the feelings I have felt.  Get a Kleenex out and read Welcome to Holland

 Still makes me cry when I read it today.  And the last part is so important, if you don't enjoy where you are in life, today - no matter what child God have gifted you with - you will never enjoy Holland and all the beauty it has to offer.  I have been having some tough days, as I always do when Annika has trouble eating, and I try so hard to look at all the amazing things she is doing.  She is changing so much, at her rate, and it is exciting that I get to be a part of it.  So enjoy whatever trip you are on and look for the positive sites as you tour around.  God will show you the very best sites to see and get you into the very best attractions if you are willing to trust Him each step of the way.

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!

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.

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

Mandisa - 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. 

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.