Tuesday, October 12, 2010

Life lately

So much has been happening it's hard to know where to begin...The school year is definitely in full swing, which means not only has my oldest started kindergarten, but I am back to teaching music lessons, and our Wednesday night kids program at church and two weekly Bible studies have begun as well. Combine all of that with the normal day to day care of three children, and Benjamin's CF treatments and you have a recipe for a big pot of Busyness with a scoop of craziness on top! Each moment of the day seems to be spoken for, and at the end of the day, so much is still left undone. I am learning a lot about priorities, time management, and multi-tasking!

Things are generally going well in the midst of the Busyness. We can't stop praising God for Benjamin. He is such a huge gift wrapped in the cutest and cuddliest of packages! He has the sweetest disposition and loves to smile and "talk" to us all the time. It still just melts my heart when he looks into my eyes with such pure sweetness. He continues to do remarkably well with CF, with no lung issues and impressive weight gain. At 3 months, one week he already weighed 16 lb., 3 oz. and had nearly doubled his birth weight! At the CF clinic they always like patients to be around the 50th percentile for weight to height ratio, and for the first time at his last visit he finally made it, and even crossed over to the 67th percentile! He was in the 20th at his first visit, and down to the 15th at one point so it's so exciting to see him thriving like this. He is just so healthy right now and we're so grateful.

Recently I met a woman who works in the NICU at the hospital where Ben was born and she was telling me about a little 4 month-old with CF who has been in the NICU since she was born because of digestive issues. I am so sad for her and for her family, and it just brought home again how blessed we are for him to be doing as well as he is. At times I feel like I'm in denial about the disease because I almost forget that something isn't right with him. We do spend a lot of time doing preventative treatments though, hoping to maintain this level of health for as long as possible. With every feeding we give him digestive enzymes and do chest therapy twice daily to break up thickened mucous so it doesn't build up in his lungs. Last month they also added a breathing treatment twice daily before the chest therapy to open up his airways so the therapy is more effective. All of this takes most of the morning between dropping Caedmon off and then picking him up from morning kindergarten, so you can imagine how the day goes by so quickly!

Caedmon is enjoying school and last week I had the fun of joining his class on a field trip to the pumpkin patch. Jayden enjoys the free reign he has over the house and all the toys while his big brother is gone to school! All the boys are growing so fast I often wonder what Eliana would be like at this stage. Toddling around the house and getting curious, I'm sure. The other day at Mc.Donald's playland, Jayden (my 3-year-old) had a thoughtful look while he watched some little girls playing and said with a smile, "Mommy, I was going to say we don't have any girls...but you're a girl, and Eliana's a girl...she's our girl Mommy." So sweet.

At kindergarten Caedmon was featured to tell about himself and have the other kids ask him questions one day. He came home and told me "I told them I have two brothers, but I didn't tell them I had a sister. I decided to keep it a secret." Then he said he doesn't like to talk about her because it makes him sad.

For me, sometimes I am like Jayden. I can think of her and talk about her freely with a smile, feeling thankful for the beautiful blessing of her life, and joy that she is in heaven. Many times, I am more like Caedmon. I have her tucked away safely in my heart, and it feels almost too sacred to disclose. When asked about my children, I often tell people I have three boys and leave it at that, thinking to myself "and a princess in heaven..." I know now that I don't have to talk about her to prove my love for her, it is etched so deeply and permanently on my heart that it has just become a part of who I am. Whether I speak or fall silent, I am always and forever her mother and that is something that cannot be erased by the separation of time, space, or realm.

Sometimes when holding Ben I kiss him an extra time or squeeze him a little tighter as I think of Eliana. There are moments of sadness for what might have been with her, but it also makes loving him all the sweeter. My heart is full of a deeper knowledge of what a treasure and miracle he is, because of the understanding that she gave me. God has truly blessed us, many times over with these sweet little ones.

God is so good...

God is so good...

God is so good...

He's so good to me...

Sunday, October 10, 2010

A Walk to Remember

Yesterday was 17 months since the day you were in our arms. I still speak your name every day. Sometimes now, it is spoken quietly in my heart, and other times we speak it out loud as we daydream about what you might be like now if you were here, or look back in rememberance of the short time you were growing in my womb, and the brief moments we held you.

Today, we walked to remember you, joining so many others whose babies are exploring heaven with you. We walked to a special memory garden and laid a white rose for you at the feet of the Hope Angel, and today, we spoke your name out loud to as many as would listen. Eliana Grace, we speak your name to say that we miss you, we love you so very much, we want the world to know: you are real, you were here, and even as you live forever in heaven, you remain alive forever here with us in our hearts. We will never stop speaking your name, and we will always long for the day that our faith becomes sight and our hope becomes a realty--that day when we hold you again in heaven.

A Walk to Remember

by Kathie Ratoj Mayo

I walk to remember
the steps you'll never take.
I carry you with me
as I firmly plant my feet.
Our trek started long ago,
before my belly swelled.
You were a love that grew-
like butterfly wings that beat.
Your gently flutters then became
kicks upon which I would dwell.
And I would talk to you, sweet babe,
about the world you soon would meet.

The sun always shone upon us then-
when you were in my womb.
And I was eager to show you the world
that would have been your home.
How you'd have loved the sun shining-
blue skies without a cloud.
The autumn leaves turning-
the snow falling all around.
The flowers in summer-
would have filled your eyes with smiles.
And the rain that might have fallen
would have caused you great surprise.

You would have traveled far with me-
holding me by the hand,
And I'd have shown you all I could-
more than I can imagine.

You hold my heart tightly now,
as though we're holding hands.
How far we've traveled, little one-
and my life with you has been sweet.
For I carry you in my heart,
as I firmly plant my feet.