Wednesday, January 21, 2015

I love the good days....

"Good days" has a different meaning to me than it used to.  How to I measure a good day?  Well, a good day usually means I got more than 5 hours of consecutive sleep, Annika is still in the same outfit in the afternoon as she was when I dropped her off (meaning minimal spit up), Annika eats enough food to put on some weight, or Madelynn doesn't throw a fit because we have asked her to do something she doesn't want to do.  Now, it doesn't have to be all of those in one day; it could be a good days with just one or two.  I look forward to the good days and they have been increasing each week.

But your know what is funny about the good days?  The more you have, the more you get used to it.  And then all of a sudden you have a bad day and because of the good days, it makes the bad days seem even worse.  Even though the bad day might not be any different than everyday was a month or so ago, but because we have had more good days we start to forget.  Then it hits and it feels so devastating and frustrating.  We haven't changed anything; meals are the same, formula is the same, sleep....but still it is a bad day and it is a set back.  It will usually take us a week or two to overcome a few bad days.

But it doesn't change the fact that I still hope for the good days everyday.  I just have to remind myself that we will make it through the rain to get to the rainbow (as Dolly Parton would say).

Oh how glorious the rainbows will be!!!  At the end of the last 4 bad days we had an amazing rainbow.  Annika is actually trying to get into a crawling position.  It is so wonderful and it makes it all worth it.  I will post a video soon.

So, here's to the good days and trying to get through the bad days.

Wednesday, January 14, 2015

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. 

Wednesday, January 7, 2015

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.