Category Archives: Faith & Hope

It Could Always Be Worse

Faith & Hope

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When I was 12 years old my sister Traci was paralyzed in a car wreck. Talk about having your world turned upside down. As a parent now, I can understand the fears & hopelessness that my parents must have felt when the doctor said, “She’ll never walk again.” There’s something that makes us physically ill when we can’t fix what’s wrong with our children.

All I remember from 1997 is going to visit my sister; whether it was for the 6 weeks she spent in ICU or the 4 months she was at Baylor Rehab- we were always there with her and I was glad. Even at the age of 12, I knew she was lucky. Most people we met in ICU lost their loved ones. On Easter weekend the doctors told us Traci wouldn’t make it through the night, but she did- and we praised God! When she went to Rehab, we met a family who had a loved one who couldn’t even move his arms. He was learning how to use a chair powered by air from his mouth. My sister could do more than he could.

It could always be worse. I learned that at a young age; and not because everyone told me… although many people did. I remember distinctly coming to that conclusion all on my own. When you cry with other families who’ve lost loved ones…when you see the despair of a person who can no longer do anything for himself… it’s easy to draw that conclusion.

Saying it is one thing. Learning to believe it is another. We all feel sorry for ourselves from time to time. And there’s nothing wrong with that! The problem occurs, when we stay in that state of mind. If I’ve learned anything from my first week of blogging, it’s that the situation can always be worse.

I’m beyond grateful for the people I’ve encountered; who have so lovingly shared their stories with me regarding their situations. Without breaking anyone’s confidence, let me share a few reasons I’m grateful..

  1. My son is still alive- So many families have laid their sweet, God given children to rest. My heart breaks for you. My prayers go out to you. And for every mother, who so desperately wishes to conceive, but for whatever reason hasn’t, my heart and prayers are with you as well. “He heals the brokenhearted, binding up their wounds.” Psalm 147:3
  2. My son is able to swallow and breathe on his own- Many babies with peroxisomal genetic disorders cannot do those things. If that’s your baby, I’m praying you feel the presence of God because I don’t how I would handle that. God, give those moms & dads strength and endurance, they are SO tired!! “God is our refuge and strength, always ready to help in times of trouble.” Psalm 46:1
  3. My husband, family & friends are here to help- If you are going through something like this on your own, I am weeping for you! Please, search the web and find an organization to support you!! For me, it’s been the Global Foundation of Peroxisomal Disorders (GFPD).  http://www.thegfpd.org/  I’m not sure what journey you’re on, but there is support out there for you! FIND it! If you can’t, ask me and I’ll find it for you! You were NOT meant to walk in this alone! “When you go through deep waters and great trouble, I will be with you.” Isaiah 43:2

I could go on and on. I’m thankful for so many things. I know it could always be worse. I believe God used my sister’s accident 16 years ago, so I could be prepared for this season of my life. What has God been preparing you for? Do you know your life has a purpose? The pain you’ve experienced was not caused by God. We live in a fallen world with free will. And while God may have allowed some horrible things to come into your life, He can use those things to bring about good!! Will you let Him? Romans 8:28 is what we call our “family verse.”

“And we know that for those who love God all things work together for good, for those who are called according to his purpose.”

Ultimately, Gideon’s prognosis sucks.  I wouldn’t wish a terminal diagnosis on my worst enemy. All that said, I still trust God will work it for good- and I can see that He already is!!

God wants someone to hear our son’s story. Maybe that’s you. In the book of Judges, there’s a man named Gideon. God used him to bring his people back to heart of God. Is God using my little warrior’s situation to do the same? I think so. We are trusting God with this because we know it will get worse. And when it does, we will remember 1 Peter 1:7 – These trials have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.

Lord, may these trials prove our faith genuine. Amen.

Great Day

Faith & Hope

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Isn’t it amazing how one day can turn around the bad week you’ve been having? Today was that day for me! Well, let me back up. It actually started last night when my husband and I began reading & responding to the encouraging comments that were left by those who read my first and second blogs… And let me just say, THANK YOU!

As we sobbed our way through each comment, my heart was overwhelmed and overjoyed! We praised God for all the ways he allowed Gideon’s story to touch so many lives in just one day! We were up so late (1:30 am is late when you have kids) &  I’m not sure what was so funny but I haven’t laughed with my husband like that in a long time. So let me say it again, THANK YOU & GOD BLESS YOU!!! We were so encouraged.

So today was great because I met some incredible people that I would never have known without Gideon’s diagnosis. First we went to the audiologist to get molds for Gideon’s hearing aides. And let me just tell you, if you ever need an audiologist, Dr. King is THE best! Her heart is bigger than Texas and she’s beautiful enough to be Mrs. Texas! She did Gideon’s molds and he was such a good patient. The coolest part about our visit with her is that she already knew who Gideon was because someone had sent her my blog post on Monday. Small world?? Maybe… God meant for that to happen? I think so.

The other person I spoke with (who also found me through my blog) was the President of the Global Foundation for Peroxisomal Disorders (or GFPD). And here’s crazy part #1- Her son has the same genetic mutation as Gideon! And crazy part #2- Her son is 11 years old! After talking for quite sometime & looking at Gideon’s lab report and photos, she believes that Gideon’s disorder falls closer to the Neonatal ALD rather than Zellwegers. And would you like to hear even more good news?? Gideon qualifies for an experimental study in Omaha!

As I was driving home this evening, I was thinking about how great it was to have all these new people to support us & walk with us in our journey! It started by simply sharing our story, and from there new doors have opened up and new relationships are being built. There’s only one thing that troubles me…

I can’t help but wonder how many opportunities I’ve missed out on in the past, because I haven’t been willing to share my story. How many people did I miss helping because my focus was on myself? How many people needed to hear words of encouragement but I was just  too busy? How many people were looking for forgiveness when all along I knew the Savior?

Is there a story you could be sharing? Is there someone you need to reach out to? Do you have some life experience & knowledge that others could benefit from? What’s holding you back? Fear of rejection? A past that haunts you? 

Today is a great day to share your story. Today is great day to reach out to someone in need. Today is great day to forgive. Today is a great day to accept Jesus as your Savior.

Today is a great day because we choose to see the good in it.

 

 

Conversations with Laynie

Faith & Hope, Parenting

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Running errands is often times no fun. Unless you’re running errands with Laynie. After having a surprise lunch with daddy today, I decided we needed to stop by the bank. And of course, in the middle of speaking with the bank teller, Laynie announces to God and everybody within ear shot, that she has to “go pee AND poop.” Yes, everyone, that’s my darling little lady there. Never a dull moment with this one.

Funny conversations with Laynie seem to always take place in the bathroom. I have her on video singing “You are my Sunshine” while pooping. Of course that means every other word was grunted (somewhat close to pitch actually). But today’s “dirty talk” began when she pointed to the little silver box (ladies, you know the one) and told me with such confidence, “Mommy this is where the coupons go.”

My daughter is 3 and a half. And let me just clarify, she’s 3 and a half going on 21. She knows the pledge, she’s memorized the Lord’s prayer, she can spell and write her full name, & many of her stories begin with, “Mommy, when I was a baby I used to….” She knows so much! And like every parent, I think she’s the smartest kid I know. In fact sometimes she’s so smart, I forget she’s just a child.

Last night’s conversation was one of the hardest conversations of my life. Given our son’s condition, we prayed and felt led to tell our daughter what was going on. How do you tell a child so young that her brother will die? How can a child so small possibly come close to understanding what that really means?

As I was rocking Gideon, the opportunity arose, and my husband and I went with it. We told her that Bubba has a genetic disorder called Zellwegers. We told her that most people grow really old before they die and go to Heaven. But because of this genetic disorder, Bubba would be very young when he goes home to Heaven to meet Jesus. We paused to see how much of this she was processing and she immediately replied, “But I’m not ready for him to go to Heaven.”

We are never ready for death are we? It seems like the people we love the most are always the ones gone too soon. For every family, death is sad: and let’s be honest, it’s down right hard and unfair. But for those who know Jesus, there is a hope in death because we know it is not the end.

As we finished that conversation, I asked Laynie if she wanted to stay and pray with us. And without hesitation, she took my hand and her fathers hand; and with Gideon still in my arms she began to pray, “Our Father who art in Heaven, hallowed be thy name, thy kingdom come, thy will be done, on earth as it is in heaven. Give us this day our daily bread. And forgive us our trespasses, as we forgive those who trespass against us. And lead us not into temptation, but deliver us from evil. For thine is the kingdom and the power, and the glory forever. Amen”

Did you hear that? Thy will be done… She doesn’t know it yet, but she’s already praying for God’s will. My heart is filled with joy even in the midst of my sorrow. She’s a daily reminder of the woman I want to be. I want her to know without a doubt that God is still good. That our world can come crashing down around us, and yet we can still say Praise Jesus, for He is good! I’m sure we will be having many more conversations with Laynie. It’s my prayer that every single one of them points her in the direction of the cross.

I’m hoping you’ll join me in talking with your kids, not just about the hard stuff, but about life and Christ. Let’s live everyday as if this is the last time we have to tell them about Jesus. It’s easier than you think. But be cautioned, they’re GREAT at spotting our hypocrisy.  Let’s also practice what we preach.

Blessings to all.