All posts by Samantha Jolicoeur

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.

 

 

Long Day

Faith & Hope, Parenting, Special needs children

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Today was long…for everyone. First day of school always is for me. Sweet children with their backpacks full of supplies headed for school with hopes of seeing old friends and making new ones. Teachers rooms were as clean and organized as they’ll ever be, and parents were breathing a sigh of relief as the chaos of summer ends and everyone is back into some kind of routine. As a former middle school teacher, I miss the first day of school. Don’t get me wrong, I’m beyond blessed to stay home with my two babies! But for me, today was long for a completely new and scary reason.

My son Gideon is 7 months old. As of August 1, 2013 we found out that he has a peroxisomal genetic disorder. Every cell in the body has peroxisomes that oxidize long chain fatty acids (don’t ask me to describe this better, I taught math, not science.) Basically the body cannot function with disabled peroxisomes, which is bad news for my little man.

The day started out with a hearing test. His disorder is associated with hearing loss, vision loss, and eventually the complete shut down of the brain and central nervous system. So today he had his hearing tested to see how well he hears now. After a 3 hour test (which included fasting and sedation), we discovered that he has moderate to severe loss. But the good news was that with hearing aides, he’d be able to hear completely fine…for now.

So as I was driving home, feeling hopeful about our little man’s situation, I received a call from the geneticist. His blood work came back from Johns Hopkins and it was not the kind of news we were hoping for. She told me that there are 2 genetic mutations in his DNA and then she said we would be facing the more severe type of peroxisomal genetic disorder…Zellwegers. Sadly most of these babies don’t live past 12 to 18 months. (Insert sound of my heart shattering).

So how do you end a long day like that? When everyone else is posting first day school triumphs and happy stories of recess, lunch, and friends… how can I choose to be happy when it feels like my world is caving in? To answer in one word- Jesus. A dear friend of mine just gave me a book (and finished it in 1 day) called “Holding Onto Hope” by Nancy Guthrie. She buried 2 of her 3 children due to Zellwegers Syndrome. On her blog she said this about her daughter Hope-

“So how were praying for Hope? I wish I could tell you that I was a great woman of prayer in those difficult days. The truth is, I wasn’t. I was really grateful that so many people were praying for us, no matter what they were praying, because I didn’t have many words, mostly just groans and tears. I was grateful to know that the Holy Spirit was interceding for us with “groans too deep for words” (Romans 8:36). When I was able to sputter out a prayer, it was shaped most profoundly by something a friend said to me on the phone a couple of days after Hope was born. She said that I could be confident that God would accomplish the purpose that God had for Hope’s life in the number of days that He gave to her. So in my prayers I began to welcome him to accomplish that purpose. I prayed that my own sin and selfishness and small agendas would not hinder his purpose. I prayed that his purpose for Hope’s life would be enough for me, even a joy to me.”

Does that last line get to you like it did me? Have you ever considered praying that something like this would be a JOY in some way? As hard as it is to believe, I completely understand why she would be praying to that end. When we first heard “peroxisomal genetic disorder” on August 1st my husband and I had an amazing heart to heart moment. With tears still streaming down our faces, we both agreed that any children we have don’t belong to us anyways. They’re on loan. They are a gift from God and He loves them so much more than we do. Knowing that, we can trust He will work it out for good. (Romans 8:28) For whatever reason, God allowed Gideon (whose name fittingly means Mighty Warrior) to be born this way. Any plans I have for him will fall significantly short compared to what God will do with his life; no matter how long it is.

I’ve always heard happiness is a choice. It’s so true. As I write about my long day, I’m very aware that my “feelings” about this can send me into a pit of despair, anger and self-pity. Like Job, I could be asking God a thousand “why?” questions. But I wasn’t there when He laid the earth’s foundations (Job 38:4). Nor did I hear him tell the oceans they “could only come so far” (Job 38:8) No, I’m going to choose differently. I’m going to remember that “my hope is in You, Lord” (Psalm 146:5) I’m going to pray for the “peace that surpasses all understanding” (Philippians 4:7). And I’m going to remember that “His grace is sufficient” (2 Corinthians 12:9).

So would you join me in praying for my son? Not that Gideon would be healed (although I’m confident that the God who created the universe can do that!), but that God’s will be done…that he would use Gideon’s life in a MIGHTY way to impact the world.  My husband recently said, “If Gideon’s life brings one person to Christ, saves one marriage, or gives one person a renewed hope…then this is all worth it.” (How lucky of a wife am I?)

Choosing to be happy, even after my long day.   🙂