lightbulb

Last night Jeff and I were able to see Chris Tomlin and his Hello Love tour in concert. It was so good! There was one part in the concert when all the lights began to fade and there was a single light bulb left on. It was probably a 50 watt. It was amazing how that one tiny light bulb could bring light to such a huge arena. It hit me that as Christians we are that light. The light that spreads into the darkness. The light wasn't even noticeable with all the big lights on. It was evident, strong and powerful and brought light into the darkness. Who is in your life that you are bringing light too? Are you letting your light shine? Am I letting mine shine? We can make a difference in those around us. There was also the singer Christy Nockels from Watermark who has a new song called "Life Light up" You can go here for a free download. Some lyrics are...

"Let my life light up like up like city lights...Let it burn for you in the darkest night..
My light will shine on earth and My power will be praised."

Have you ever driven toward a city where even from far away there is a casting upward the lights of the city. Have you seen the images from space where they have taken pictures of the earth? You can see lights of city even from there. Wow. We can have that kind of impact for our world...

first day again!

Last Thursday was Laine's first day at preschool. She had a great time and actually cried when it was time to go home. She keeps asking when she get to go back, and telling me she is going to be really good for her teachers and says "I won't poop in my pants...I'll go on the potty chair." It is about time little one! They have the parents stay the first day so I was at the school too.

Tomorrow will be a big day as she will be dropped off and I know I'll be crying as I pull away. I remember after she was born (and we found out something was wrong with her newborn screening) during the first appointment with her Genetic Dr. I was asking questions like.."So will she be able to go to school?" "Will she be able to walk?" "Will she be able to climb stairs?" "Will she be able to eat food normally?" Really my questions in my head (that I was never able to ask) were "Will she live?" and "Could she die?"

I never asked those questions though. I think I was asking all the other questions to answer the big ones. At the time I felt relief when the dr. said she should be able to go. If she should be able to go to school then she can live with this disorder (VLCAD see side bar for more info) then right? That really was the question.

Since those early days after her birth I have seen how God has worked miracles in her life and our family. Her tumor on her eye is almost gone...totally. She may need minor plastic surgery later but it is so much better than the large Hemangioma she once had. She is strong and healthy and smart and funny. She returns to her specialists in a another month but we are expecting and trusting God for a good report and normal labs.

God has been so faithful during the last 3 years. We are thankful and give Him all the glory for allowing her to be strong and healthy. We do ask for your prayers to protect her from illness that would require any Hospital stays this year. We know how to treat Laine when she is sick which we are grateful for, but we would rather her not have any issues this fall and winter. Our God is good all the time. He knows what is best. While we can't always understand the pain and worry, how we deal with the "curve balls" is what can be pleasing to Him. Do I bring glory to Him? And hope and encouragement to others? Do I trust Him? Always? I'm trying...

To whom much is given much is expected.

lake michigan

Just a view that we love every summer (sometimes more than once if we're lucky!) I remember as a kid we visited my aunt and a lighthouse in her town and thought it was so cool. My sister and I climbed to the top. Our little legs had to work so hard to make it to the top but we did. Back then they were special because I only saw them a few times during all my childhood. Now, I look at lighthouses every summer and a couple things come to mind. One, is that the lighthouse guides all those boats who need direction to make it back to shore safely. It is bright, and sturdy and a beacon to guide. It also guides even when it can't be seen. There are times when we have been standing on the beach directly in front of the lighthouse and can't see it because of the fog. The mist floats around and clouds the sky and the boats still can return safely because of the loud mellow horn calling them home.

Faith is like a lighthouse. It is the substance of things hoped for but not seen. Sometimes that path is not always clear. Thankfully God gives us his word to light our little paths. To get us closer to Him. But even when we can't always see exactly what or where to go...he calls us and waits for us to trust in His plans.

I am planning to make more time to reading and studying the Bible this fall. Not just that but memorizing it too. Wish me luck!

Give thanks

This picture is from Laine's birthday a few weeks ago. She turned 3 recently and we have a lot to be thankful for. She has been been doing so well and is healthy and strong. After she was born with rare genetic disorder called VLCAD (see side bar for more info), I was consumed with worry, anxiety and fear for the first few months of her life. But I learned to trust that we have a good God that wanted us to have joy and not pain, hope and a future for her life seemed more realistic. My husband is so faithful and was such an encouragement. He never wavered in trusting that God would answer our prayers. I so appreciated that. She is so spunky and our little firecracker. She'll start preschool this fall, and that will be an adjustment for me! Here's to Laine and her birthday!

Oh those beautiful eyes...

My prayer for you Paige is that through those eyes you see...the goodness in others, the beauty of yourself, hope for the future, a sister who adores you and parents who love you. Paige, I hope you will see how blessed we are, and how hard others struggle, how loving and showing others Christ's love can change others world as well as your own. I trust that God will direct your path and and that you see His ways are good. I believe in you. I love you to the moon and back....

Dear little spunky Laine, my prayer for you is that though your eyes you will have compassion for those who are sick and in need. You have seen so much in your 3 years of doctors, hospitals, appointments that God will give you those eyes for love, patience and kindness to others. I pray that you can see how special and unique you are and God has a plan for you life. I hope you see the good in others, our love for you always, and a sister who thinks you are so special. You are the fizz that gives us fun, laughter, and joy. I love you to the moon and back too little one...

Wonder

Natalie Merchant is one of my favorite singers. I love the song "Wonder". It is the song that plays when you log on here. Laine is one of God's creations and He is good. He makes no mistakes. Another mom that writes a blog I read (and also has a child with a rare genetic disorder) wrote recently, "find joy in the unexpected" ( to see here to go to her post http://lisaleonardonline.com/). I am glad that I am at a point now where I can find joy. With God, I can find the joy in the unexpected. Laine is "gifted with love and with faith she will make her way". My prayer is that Laine's way will be God's way and His word will light her path. With God all things are possible little Laine. Here are the words to the song

WONDER

"Doctors have come from distant cities

just to see me stand over my bed

disbelieving what they're seeing

they say I must be one of the wonders of god's own creation

and as far as they see they can offer no explanation

newspapers ask intimate questions want confessions

they reach into my head to steal the glory of my story they say

I must be one of the wonders of god's own creation

and as far as they see they can offer no explanation

I believe fate smiled and destiny laughed

as she came to my cradle "know this child will be able"

laughed as my body she lifted

"know this child will be gifted with love, with patience and with faith she'll make her way" people see me I'm a challenge to your balance

I'm over your heads how I confound you and astound you to know

I must be one of the wonders of god's own creation

and as far as you see you can offer me no explanation

I believe fate smiled and destiny laughed

as she came to my cradle "know this child will be able"

laughed as she came to my mother "know this child will not suffer"

laughed as my body she lifted "know this child will be gifted with love, with patience and with faith she'll make her way"

Paige's faith

This week I asked Paige what she has been learned about God at Church Camp and what she is learning at Sunday School. She replied..."Well I learned that in heaven there are pearly gates (once she opened just one oyster with a pearl inside and was thrilled, I can't imagine what she is thinking when there will be gates covered in them) and Goldy roads (like the yellow brick road), and ya know what else mom? I get to see Jesus face." Precious, Priceless, my Paige.

Rainbows...

I love rainbows. I love the bright cheerful colors. I love the happiness and joy they bring my young girls who stare in amazement at the beautiful painting in the sky. I love even more what rainbows represent. God's promises to me. He loves me and cares for me. He does you too.

Today, he cares for my friend who miscarried and lost her baby...He cares for my patient that fought the fight and passed, but, is now looking at Jesus face...He cares for Laine and Paige and our family...He cares about you too. He cares about the big and little things in our lives. Thank you God for the promises you give. Thank you Jesus for the cross and for reminding us when times are tough you've been there too...You know pain. Without the rain there can't be the rainbows.

Look how far we've come!

Searching though old pictures is fun and I found this one of Laine. It reminded me of how far she has come with the healing of the Strawberry Hemangioma that developed after birth. This picture was taken about 2 months after it stopped growing so this isn't when it was at the largest, but, it gives you an idea from when she was 10 months old to now about 2 1/2 years. We are hopeful in the next few years she will continue to heal better. She may need some plastic surgery in a couple years but our doctors are hopeful that it will get better with more time. We have seen Dermatology, Hematology and Opthalmalogy at U of M and all are pleased with the progress. We see all the doctors again later this summer for check ups. We'll keep you posted! She also returns to her Genetic/Metabolic doctors later this summer and we are pleased with Laine's progress and health and hope they are too. She has only had one hospital stay this last winter for the year so far. We are hopeful for no more stays this year. We give God the glory for meeting our needs and answering our prayers. During the first few weeks after she was born and we were faced with her Metabolic condition and the growing Hemangioma, needless to say that I was one stressed momma. I would have never guessed our lives would return to our "normal" that it is today (although it was my prayer). I am reminded to ask by prayer and petition our desires and God is good and faithful.

The hard days of being a nurse

Being a nurse for the last ten years I have seen my share of heartbreaking stories, illnesses, patients and families. I have probably been present for at least 50 people passing. Every week I take care of at least a few precious patients who have less than a week to live. I have shed a few tears for every patient that passes away (If I ever don't then it would be time to hang up my stethoscope). But, few have touched me in a way that one particular family has this last year. I cry today for her family as she is very sick and barring a miracle I have learned she probably has less than a day to live. The special thing about her is that her faith is strong in the mist of miserable circumstances. But God is good and faithful during this time. She has encouraged so many people during this time of her illness. Her family has been a shining light. I pray for them today and I know how good our God is and ask for that miracle. Our God is big enough. I have asked for miracles before (When Laine was born and diagnosed with VLCAD). So I have seen first hand how he has blessed Laine's life and our family. We give God all the glory for how good Laine is doing and so strong, sassy and feisty. So tonight I think of them and His promises. We "can do all things through Christ who strengthens us" Phil 4:13

The views of the Mackinaw Bridge

The last couple days we went to Mackinaw Island and Mackinaw City. We also saw the Mackinaw Bridge from both places. A couple things struck me about seeing this enormous bridge that connects our Upper and Lower Peninsula in Michigan. The views stepping back were so much better than when we were on the bridge. The most interesting views were from both the mainland and the island. When we were on the bridge it was hard to see the beauty, the patterns, the uniqueness, and the enormity of this bridge. It looked ordinary, regular, and normal. The bridge didn't change though, just my perspective of it. Isn't that just like our lives..... Our normal, routine, simple, stressful, ordinary days are spectacular when we just take time to take a step back and enjoy "the view". I know we all have reasons why it is hard to take a step back (jobs, illnesses, stress, finances, and schedules). But when you can... just do it! This is as much a reminder for me as anything. Sometimes the routines of the day seem boring and normal but I know that I am blessed beyond measure with these extraordinaire moments with my husband and girls. With God I am able to appreciate all these times. What is your favorite view?

A Trip to Holland

I read this poem a few months after Laine was born. It tugged at my heart strings as Tulips and Holland have always been special to us. We go to Holland Michigan to see the tulips every May. The tradition started before we had the girls and continues to this day.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby it's like planning a fabulous vacation to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, The Michelangelo David, the Gondolas in Venice, you may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says Welcome to Holland.
Holland?!? you say. What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I have dreamed of going to Italy.
But there has been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a new language. And you will meet a whole new group of people you would have never met.
It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you have been there for a while and catch your breath, you look around....and you begin to notice that Holland has windmills...and Holland has tulips...Holland even has Rembrandts.

But everyone you know is coming and going from Italy...and they're all bragging about the wonderful time they had there. And for the rest of your life you are going to say Yes, that's where I was supposed to go. That's what I had planned.
And the pain of that will never, ever, ever ,ever go away...because the loss of that dream is very, very significant loss.
But, if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very lovely things...about Holland.

By Emily Pearl Kingsley 1987

We thank God for helping us to grow and learn during Laine's medical issues and VLCAD. He helped us to be stronger than we ever knew we could be. He strengthen our faith. He provided. He understands. He loves.

A picture is worth a thousand words....

Laine was playing outside a couple weeks ago and I snapped this picture of her. I love this picture. The innocence, curiosity and simplicity speak so loudly to me. I loved her natural look. The wonder and amazement that she has for every new experience is awesome. That's one thing I love about being a parent is that children help bring excitement and joy to the most simple things. Even Paige at 7 still is excited about bubbles, sidewalk chalk, rainbows, splashing in the mud puddles, caterpillars and butterflies and most recently her new tadpole that is amazingly still alive after almost 2 weeks of being "rescued" from our friend's pool. She is feeding it and watching it grow. God, help me to appreciate the simple, normal, magical, wonderful, and fulfilling moments you give me too.