Thursday, February 19, 2009

We Have A Date

I've been blogging now for over a year. The world of Bloggyville is an interesting community - full of joys, sorrows, amazing new friendships, and a glimpse into total strangers' lives. Before I was a blogger, I lived my happy little life in my happy little house with my happy little family. Recently, as my blog is growing a little bit and as I'm meeting new people online (especially through Twitter), I am hearing more and more stories about parents who have sick kids. These stories are heart wrenching, inspiring, and leave me in awe of the people who are living them. Some kids have been sick and have gotten well, like Harper. Some kids have been sick and are now with The Father in heaven, like Audrey Caroline and Cora. Some kids are still fighting. A lot of kids are still fighting.

One thing that I've noticed that seems to be a common denominator amongst these families is their faith. They have a trust in Jesus that exceeds comprehension in a lot of ways. Their babies are fighting for, and sometimes losing, their lives.

And I can't help but think of my 3 year old daughter, Tait. Tait has Beckwith-Wiedemann Syndrome, which I blogged about here. Because BWS puts her at an increased risk for certain abdominal cancers, she is tested for these cancers every 3 months. I take my little girl to a hospital where they draw her blood and do an abdominal ultrasound on her. They check levels and look for masses.

And it scares me to death every single time we go. Because having your baby tested for cancer is hard. HARD.

And the more we go through this, the more I am reminded of something Beth Moore talks about a lot. Fear. She says that when the enemy finds out what your fear is, he will threaten you with it. My fear is that something will happen to Spencer or one of the girls. That fear has been heightened lately and I'm not sure why. Seriously, is there a mom who doesn't fear that something bad will happen to their family? I have to make a choice to trust HIM for her safety. I know that my God is good and that He is faithful. He has carried people through having a sick child and has carried people through the loss of a child. He will carry us through her tests.

Even though I say that and honestly believe it in my heart, the fear of the possibility that one of those tests could come back bad is sometimes overwhelming. Trusting Him even with the very life of your child isn't easy. As a mom, I want to know with all certainty that she will live till she's 100. I pray every single morning for a faith and a trust that I see in Cora's parents. And Audrey's parents. And Harper's parents.

Then I received an email this week from the nurse that schedules Tait's testing. Because she will be 4 in July, she only has to have her blood work done one more time. May 4, 2009. This date marks a milestone in a BWS kid's life.

I saw this date as a sign from above. I felt like God was reassuring me that He is in control. He knows her name. He loves her. He has her in the palm of His hand. He wants me to trust Him that either she will be okay, or that I will be okay with whatever we are given. It's a sobering thought but it really puts Faith to the test.

Harpers parents, Cora's parents, and Audrey's parents were tested. And their God proved faithful. He is faithful. He is just. He is worthy of all glory and honor. Read their blogs and know their stories. They have made my faith stronger. Their children have shown the face of God to the world. They did their jobs well.


Fran said...

Please tell me you just watched session 4 of Esther. Please please please. And, did you just not eat it up with a holy spoon???

Well, I'm with ya on this one. I don't have my children tested so the thought of doing that on a regular basis would send me into a full blow panic crazy momma mode.

I surrender my stuff to Him every single day. I learn that I CANNOT do one single thing without Him.

And, on another note, more than thrilled to "know" you all over the world wide web.

My word verification is "ingstic" and I have nothing to say about that. ;)

Melinda said...

I was just going to ask you the same question as Fran!! Session Four - oh. my. goodness.

Bless you and yours, friend. I didn't know about your daughter until now. How wonderful and amazing that we have such a BIG and FAITHFUL God.

Love knowing you on BOTH sides of the screen!

XO Melinda

edub said...

Preach it, girl. I can't comment on Esther unfortunately, but I can say that you have a good word! Also, I love my CHEEKS. And you.

Rachel said...

Ah sweet bloggy friend, this post just rings with me b/c of my sister's son and his tests. SOoooo true and thank you for sharing that you're just right at that same place! He is faithful and we can trust Him. Working out that belief is a killer sometimes. But your Siestas will hold you up! Incidentally, I'll remember that date b/c my oldest turns 5 on May 4th!

much love to you!

connorcolesmom said...

Oh AMEN sweet Robyn
Trust in Him
I loved when you told us about Tait and how you found out about her syndrome - how many times did God confirm to you that He has Tait in the palm of His hand
I love you sweet Robyn!

Heather said...

Thank you for sharing, Robyn. I needed this tonight!

Cheryl said...

Thanks for sharing this with us. What an encouraging word!
Love ya!

Sam, Erin, Ava, Madeline and Asher said...

Yea... 4 yrs down! You are blessed... Tait is blessed!I am counting the months until we dont have to go anymore either!!
I am doing the same Esther studay & He has been speaking alot of the same thing to me as well, so thank you for writing what you did! God is so faithful :)

Rune said...

I love this post. Thanks for sharing.


Tammy said...

God tells us to be anxious for nothing and to trust in him with ALL our heart and lean not on our own understanding.

Sometimes it is so hard to remember this and actually do it. Blessings to you and your family as your DATE approaches!

Susan said...

Well Miss Robyn.

To say I was humbled when I came here today is an understatement. Having just "met" you over the last couple of days via Fran's insanely hilarious and fun contest and then officially on Twitter today, I already felt I knew you a bit. But after reading just this one post, I totally felt such a heart connection with you and I will tell you why.

Did you see on Twitter today when I said that I had been in our church sanctuary (I work at our church) and had an out loud conversation with God? I was so saddened and so upset and just so at a loss over the exact same thing (and even some of the very same children!) you speak of here. The illnesses, the loss, THE FEAR. I was really questioning God on all of this and the fact that we just can't take it! It's too hard. It's too scary. And I felt in my heart that He was telling me that I have it all wrong. That is why I feel the fear, the sadness, the pain.

We are not of this world. We are of His world, His kingdom. That is our home. That is where we belong. He leaves us here or not leaves us here to do His work. Through us, in us, by us. It was at this point I asked Him (aloud) if it was really true. That He leaves us here because our work isn't done. And that He takes the sweet little children to do His work through them, through and to those left behind. And all I heard was silence. And so I hollered it out to Him, "IS THIS TRUE?!" And I knew in my is. I was quickly reminded that He wept over the death of his friend, Lazarus. Even knowing that He was going to bring him back to life.

I say all of this to say that, well, I don't now why I'm saying all of this! But I do want you to know that I'm praying for you and your sweet little Tait and I'm praying specifically for your fear. Oh, I know the fear thing. I do it well.

Jen @ One Moms World said...

I couldn't agree with you more. I just love when I find people in the blogging community that has such awesome trust in the Good Lord. He has definitely brought our family through tough times. I will keep your daughter in our prayers. Please keep us posted.

Anonymous said...

ahh Robyn -- this post truly touched my heart. I'm honored that you shared Tait's syndrome with me and I can only imagine what you experience each time those tests are run. I'm praising God with you that the last one is coming soon.

You are such an incredible woman, mom and friend. You bless my heart so much!

Aimee said...

Thank you for sharing this! I think I commented a LONG time ago when I first found your blog about my daughter having BWS.

Abbie is almost 18 months, so we have a few more years of testing. I think when Abbie turns 4 we'll have a party to celebrate no more blood tests. She'll have to have ultrasounds until she's 10 because she has 2 types of it.

Anyway, I'm not even sure if you'll see all this, but I wanted to thank you. Also, are you going to the BWS conference in Boston this year? More info is at:

Kelly said...

That's awesome that you are almost at the end of testing - what a HUGE praise!
I struggle with fear and worry too. I have to say that verse from Psalms over and over to myself "and he will have no fear of bad news". Along with all the verses about worry. I just always ask God to take my worry and fears and put them in His hands instead.
I pray that you will have GOOD NEWS soon!