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.   🙂

 

91 thoughts on “Long Day”

  1. Praying for your family…love and admire your courage and faith in He who laid the foundations of our world! Praying your “Mighty Warrior” will be used in a mighty way!

  2. Sam…you are an incredibly gifted writer. I think blogging it a wonderful way got you to heal, us to catch up on your journey and to share your story with others. Thank you for giving us an insight of your day from your perspective. May God wrap His presence all around you guys. Xoxo

  3. Wow…what a powerful post! For being new at it I think you did a pretty amazing job! I can’t imagine the complex swarm of emotions running through your heart & mind right now, but I will be praying for Gideon & for all of you. You’re right, God’s purposes for him will be greater than you or I can imagine (Eph. 3:20). Keep updating on here as you & your family journey down this road. You will have lots of people praying for you!

  6. Your blog was absolutely wonderful because it truly came from your heart. The faith you and Kevin possess in our LORD is absolutely phenomenal and felt by everyone who knows you both. We will continue to pray for your son and the work the Lord has chosen for him. God Bless you and your family as you continue to understand God’s will for Gideon.

  8. Wow, what a powerful message. First, I want to start by saying your children have already been blessed by God to have such great, God-fearing parents. I’d be lying if I told you I know how you feel. But I can say I know what it means and what peace it brings to have such great faith in The One who created us all. I will be praying for Gideon (love his name) and your family. You truly are a strong woman, a virtuous woman (Proverbs 31:25). I will stand with you and trust God’s will to be done. Thanks for sharing…really blessed my spirit.

  9. God will heal Gideon whether it be here on Earth with you or in Heaven with him. Our family have been and will continue to join your family in prayer. Your journey with Gideon will touch lives and has most definitely touched mine.

  10. Sam, I see a book in the future to help others that will have to deal with this. God will use Gideon, but God will also use you. Prayers to you sweetie as you guys take each step of your journey with Gideon, your Mighty Warrior. Hugs to your whole family and a smooch to your beautiful little Gideon…I would love to smoosh those cheeks… 🙂

    1. Thanks Debbie! I’ll smoosh those cheeks a few extra times for you! We appreciate your prayers!

  11. Aunt Donna was right your blog was absolutely wonderful, just keep your faith strong and always believe in the Lord. God must have been talking to Laynie when she wanted her baby brother to be named Gideon ( mighty warrior) . Gideon came into your life for a reason and only the Lord knows why. May he Bless you and your family now and forever, and keep you strong in your Love for one another. Love you all and always thinking and praying for you.

    1. Thanks Aunt Jeanette! I agree, Laynie had an “inside look” at some point! 🙂 Miss you dearly!

  12. Sam, I’m struggling to find the right words. You & Kevin are so strong in your faith. I stand in awe as I watch y’all deal with Gideon’s situation. I will continue to pray for that precious child of God, for you & Kevin, for sweet Laynie & for all of your extended family. My heart hurts for each of you. You are so correct when you state that are children are gifts from God. But in our own selfishness, we are mere children not wanting to share or give up our special gifts that mean so much to us. God bless each one of you. Love you all very much. Nanci

    1. Thanks Nanci! We love you very much! Thanks for all your prayers and support. 🙂

  14. You have given me hope…although are stories are different this is so what I needed to keep going. Prayers going up for your family.

    1. Rachel, I don’t know your story but I’m glad mine could provide some hope. I will be praying for you and yours as well. I used to always say there’s nothing so broken that it’s beyond God’s repair. And while I still believe that, for my situation, God’s repair plan seems to mean calling my son home before I’m ready. I pray you’ll find comfort and hope in the arms of the Father. 🙂

  15. This was absolutely amazing! I will pray for you and your entire family that Gods will be done.

  16. Such an inspiration! I pray for you, your family & that sweet boy. I have faith that The Lord works miracles.

  17. It is so tough to find the words for prayer when your heart is breaking. My husband was diagnosed with a fatal illness and there were no words. I couldn’t form a rational thought much less pray. So I asked God to give me the words and he spoke to me heart and told me to, “pray for peace.” I am in no way comparing our situations but whether you are a heartbroken wife or Mama our faith and attitudes make all the difference in our situations. Prayers for you and your family.
    Psalm 29:11 “The Lord gives strength to his people; the Lord blesses his people with peace.

    1. Thank you April for sharing your story with me. It gives me hope! Our stories our not different. Loss feels the same across the board. And God’s peace comforts us all no matter what or who we’ve lost. You’re right about our outlook on things. It does and has made a difference for me. Thank you for taking the time to read my blog. I will pray for you and yours.

  18. This is so beautiful, thank you for sharing! I’ve known Gods peace in the storm and I pray that he blesses you with it as wel!!!!Gods Speed

    1. Thank you Olivia for taking the time to read it! I know His peace and his grace is sufficient. I’m happy to know you’ve experienced it during a storm as well. 🙂

  20. My best friend’s baby, Anabelle, was diagnosed with ZS last year. She is now 13 months old. It is a heart wrenching disease but Anabelle is definitely a gift from God. Stay strong and lean on Him. You will most definitely be in my prayers and thoughts.

    1. Katie, thank you so much for sharing this with me. We don’t know anyone personally who’s gone through this with ZS. The fact that she’s 13 months blesses my heart because I’ve heard most don’t live past a year. I will pray for Anabelle and her family. God bless you for your prayers and support. 🙂

      1. Samantha,

        Hello. I am so very sorry to hear of your son’s diagnosis. Our son, Ethan, is 3 years old and was diagnosed with PBD-ZSD (Peroxisomal Biogenesis Disorder-Zellweger Spectrum Disorder) when he was 28 days old.

        I am the Registry and Support Group Coordinator for the Global Foundation for Peroxisomal Disorders (GFPD) and I want you to know that you are not alone! GFPD connects more than 200 families from over 20 countries who understand this diagnosis and journey.

        I sent you an email and a message on Facebook. I look forward to getting to know you and your family. Please know you are in my thoughts and prayers.

        Love, hugs, and prayers from Illinois.

        Pamela Marshall

    1. Thank you Faith for sharing this link. My husband and I will be watching it soon. God bless you as well. 🙂

  22. I’m so grateful for meeting and spending time with your Mighty Warrior on Saturday! I love you guys and will continue to pray for each of you. Please know you do not walk this road alone because God has given you many people to love you through this journey. Thank you for choosing to trust God with your journey and allowing us to see how awesome He is in and through each of you. Big hugs!!

  23. I’m in complete admiration of your faith and strength. My heart goes out to your sweet family. Gideon’s life surely will make a mighty impact… He’s already caused me to be a more patient and grateful mother, and I’m sure there will be many others who become better due to him. Thank you so very much for sharing this with us. You’re in our prayers.

    1. Thank you Danielle. I’m grateful you took the time to read my post. Thank you for your prayers!

  24. What a beautiful story! Gideon is a lucky boy to have you as a mom!
    Two things, God never gives us trials we can’t handle. You were picked to be this little mans mama for a reason. You are strong enough to face whatever comes!
    Second, families are forever! You will be with your family after this life is over. I know that! If you want to know more, contact me and I will be happy to share, but take comfort in the fact that you will always be his mom!

    1. Thank you Jennie. I look forward to the day when “every tear will be wiped away and there will be no pain and suffering.” Thank you for your encouragement. I feel lucky to be his mommy!! You’ve blessed my heart. 🙂

  25. Sam- I must thank you so much for pouring your heart out on this matter via blog. I don’t know you or your family but your incredible faith and trust in Jesus is inspirational. I have struggled with some issues recently and what you wrote about finding the joy and the purpose in a situation really struck a chord with me. I will be praying for God’s will and great purpose to be revealed for you and your family. Gideon is a great name and I know that GOD’s will is mighty and he will lavish your family with love, grace, and even joy!

    1. Megan, I’m beyond blessed to hear that what I wrote was meaningful to you. I will be praying for you and whatever issues you are struggling with. God is faithful and will see you through whatever you’re facing. 🙂 God bless you for your encouragement and kind words. I appreciate them!

  27. Thank you for sharing your story/journey! Praying for you and your family and for Gideon’s journey here. May each day bring you new hope! Many blessing!

    Also, I thought I might mention a wonderful group of photographers that donate their time and skills to capture memories of your beautiful family and Gideon! They are a non-profit organization. If you are interested, here is a link to their facebook page. https://www.facebook.com/FocusedOnLifePhotographersShootingWithTheirHearts I

    1. Thank you Cindy! I appreciate your prayers. And I’m so excited to look into these photographers!! Thank you for sharing their site with me!!

  29. Wow!! I came across your blog on IG and I’m so glad I did. I am 24 years old and am going through the toughest divorce. I feel like I have failed and many more emotions. But after reading your story it gave me a whole knew perspective. What a humbling and powerful message you have given so many people. Gideon has already made an impact on me and you as what I can get from your blog. Thank you so much for sharing. I will continue and believe with so many other people that Gideon is going to do wonders.

    1. Shevawn I’m glad you came across my blog as well! I’m sorry to hear you’re going through some tough times. My counselor gave me a book called “Lies Women Believe” by Nancy DeMoss. I wish I had read it as a teenager. It gave me hope and confidence and a new insight on trusting the Lord instead of what this world tries to offer. My husband and I had an interesting start before we got married and I’m planning on writing about it soon. I will be praying that you find comfort and peace in the presence of the Almighty. Thank you for your prayers and encouragement.

  30. Please know your mighty warrior has already served a great purpose. I’ve been struggling for years with coming to know and trust Christ. I thank you for your courageous and love filled post for it has forever changed my heart. May He continue to show you his love and his plan for your Gideon.

    1. Shelli, I’m overwhelmed to know this. My heart feels as though it’s bursting out of my chest and as I type now, tears are falling from face. Knowing and trusting Jesus as my Lord and savior has been THE only way I’ve made it through some hard times in my life. I was saved young and didn’t really appreciate my salvation until my twenties. I thought because I was a christian that God should spare me what I was going through; but that’s not the message of the gospels. John 16:33 Jesus says, “..in this world you will have trouble. But take heart! I have overcome the world!” Following Christ sometimes means suffering as He did. This world isn’t easy because it’s not our home. I will be faithful to pray for you. Thank you Thank you Thank you for letting me know this about you. Please feel free to write me anytime.

  31. I don’t know you and probably never will; however, your faith and Gideon’s story has inspired me. Inspired me to be happy. To always trust in God. To know that His will is the way. Thank you so much for your story of happiness. Many prayers for Gideon, you and your family.

    1. Heather, we may never know each other, but by you taking the time to read my blog and write me, means we could! I’m so happy to hear my story has inspired you & I appreciate your prayers. If you have a facebook account, we could be FB friends. 🙂 Thank you for taking the time to write me. I feel beyond blessed and encouraged.

  32. Praying for you and your family and your sweet little man. My heart breaks for you. I recently lost my baby girl (Amelia) to a genetic disorder. My heart shattered as well. I cannot begin to tell you how sorry I am that you must go through such pain. He is a beautiful baby and God will hold him close.

    1. Amanda, my heart aches to hear about your baby girl Amelia. What a beautiful name!! I can’t help but think about how much more God loves our little ones than we do. When we found out my husband cried to God and said, “You don’t know what this is like!” God quickly convicted his heart that He did. God knows what it’s like to watch his own suffer. It gives me hope to know that He understands EXACTLY what we’re feeling. I will be praying and thinking of you as we travel down this path that has already been walked with warriors such as yourself. I’m honored that you shared this with me. Thank you.

  33. Wow. Our son who is 14 months old has a genetic metabolic disease and after a few very “woe is me” days over our last visit with the geneticist, I needed this. Thank you for the reminders that my heart desperately needed to hear.

    1. Beth Ann, I never want to hear of anyone going through something horrible with their child, yet I cannot stress enough how encouraging it is to my soul to know that others are walking or have walked this path. I am never alone because God is with me, yet to have fellow sisters in Christ stand with me, gives me even more hope and strength. Thank you for messaging me. You’ve lifted my spirits and I will pray for you. 🙂

  34. Praising God for the time you get to cherish with this sweet little boy. God’s plan far exceeds ours.
    Romans 8:28 “And we know God causes all things to work together for good to those who Love God to those to those who are called according to HIS purpose.”
    What a great gift it is to know God during hard times. Without Him we have nothing.
    I will be praying for your family and that many may come to know God through this and that you will draw closer to God during this time.

    1. Thank you Jacey! Romans 8:28 is our family verse (even before this new season). You’re right w/o Him we have nothing. Thank you for taking the time to write me.

  35. Sam – I was so touched by your blog. My heart hurts for you and at the same time my heart was filled with joy to see the faith you & Kevin have. Your faith is an inspiration to me as I am sure to many others. I can only strive to have a fraction of your faith. I am praying for sweet Gideon and your precious family. With much love.

  36. I needed to read your message today. Thanks for inspiring me. Prayers of strength and continued clarity for you and yours.

  37. Sam-

    I’ve heard so much about you through your sis Traci. I used to go into the shop and talk with her and your mom about all that you were going through when pregnant with Laynie. Oddly enough, I knew who Kevin was because he was a coach for my kids at Keeley. When it all came to full circle, I was so thrilled to hear that you and Kevin ended up a family. I absolutely adore Traci and your mother as they have incredible faith in the Lord. You come from a wonderful family that loves and supports one another. You and Kevin have been on a journey and Gideon’s journey is another God wants you to take. He has chosen you to be Gideon’s parents and for you to spread the word of God amongst the many things you will always do in honor of your son. There are no words to say when a child is sick and when a child has an illness that will not allow him to walk alongside us on this earth for the length of time we thought. You are right, Gideon may be on loan from God, but he is a true testament of your family’s love.
    While I may ot have met you in person, I feel I’ve known you for so long. I may not share life stories with you, but I am here for you in spirit and as a sister in God I love you, Kevin, Laynie and Gideon.
    God bless you Sam. I will be walking alongside you in spirit.

    1. Shannon thank you so much for writing me. It blesses me to know that others are cheering us on as we go through this. My husband and I have been fortunate to give our testimony twice at LakePointe’s RE-Engage marriage program. It amazing what God can do with our lives when we lay down our pride and submit to Him. I love that my family owns Fonda’s because it’s like having an additional family through their customers. If you have the time please go by and visit. My mom and sister could use some encouragement and HUGS! They are grieving as well. I’m so thankful you messaged me and I’m grateful for your prayers and support as well. God bless!!

  38. Through the power of social media and divine intervention your blog came my way. I pray for your family and am so touched by your faith.

    1. Iowamom, wow! Isn’t technology amazing! We would otherwise never have met! Thank you for taking the time to read my blog. We appreciate your prayers! God bless you! 🙂

  39. I am so proud of the way you and your husband are handling this extremely difficult situation with Gideon. I know God will help you through it because you are trusting in him. Please know that I will be praying for your family along with all the other people who love you. You are already helping so many people by sharing your love for Christ and your journey with Gideon. Take care sweetie.

    1. Ellie!! Words cannot describe how much I love you!! You’ve always been so kind to keep in touch with my sister! I love you for that! And I’m so thankful for your prayers and support as we go through this!! You’re wonderful!!

  40. Samantha,

    I’m sorry you had to learn about Zellweger Syndrome, but so thankful you are sharing your story. I left you a personal message via Facebook, and I welcome you to friend me so that we can connect on a more personal level and introduce you to our families. You have an instant family amongst us that are parents of children with Peroxisome Biogenesis Disorder – Zellweger Spectrum Disorder. My son, Sam, was given the same prognosis and is now eleven! We have a strong parent and medical community, and I look forward to connecting with you soon.

    Shannon Butalla, President
    The Global Foundation for Peroxisomal Disorders
    http://www.thegfpd.org

    1. Yes! I responded and am BEYOND amazed at what God is doing by connecting us!!! Thank you thank you thank you!!!!!

    2. I am so glad you called! Thanks for reaching out! I cannot wait to meet you and all the other families with babies like ours! You’ve encouraged and blessed my heart so.

  41. You are amazing and have had a profound impact on tons of people already. Personally I look at my small agenda/minor problems with a glad heart and a commitment to focus more on Gods agenda for my family. Thank you for sharing your story and your faith.

    1. Thank you for taking the time to let me know this! It’s encouraging to hear! God bless you and yours!

  42. My week has been long and painful and in your words I realize that my week will never be as long as your days. I am inspired by your words of faith. I am inspired by the scripture you quote. And I am inspired by your choosing to KNOW God can bring good and light to even the darkest places in our lives. I am most inspired by the Faith you have given your daughter, when you are facing fear and hearache. Every child deserves that. I am so sorry you have been given these challenges, but once again, God is wise. He knew he could trust you to not be a victim. He knew he could count on you to be HIS child on this journey and he knows you will give your daughter tools, faith and strength for her journey in life. You are a truly blessed wife, mother and child of God. My prayers are with you and your beautiful family. Thank you for being open to God’s will and for sharing it with the world. Your son’s legacy has already begun and we can’t even comprehend what miricles will come.

    1. Rebecca, you have no idea how you’ve blessed my heart! Tears are falling from my face as I write. Your encouragement and support is so appreciated. I will pray for you as you struggle through this week. No matter what we face, our pain is real. We can’t compare. It all hurts. But God is good and gives us peace and rest when we need it most. I pray you will hide in the shadow of his wing; under the arm of the loving father is where our pain subsides. Thank you for writing me. God bless!!

  43. No mama (or parent for that matter) is ever prepared to hear the words that you had to hear for the first time such a short time ago. I can’t fully grasp the emotions that you and your husband are feeling day in and day out. I’m a woman of faith. I am. But there’s something about my babies that makes me lose sight of the fact that they really aren’t “mine”. I don’t like it and I don’t like admitting it. A mother with the strength you have…to be able to lift your baby in the midst of your pain and tears and say, “Here you are Lord. Take him. He’s yours. Use us as your vessel for the world.” Wow. It’s powerful. Do know you are being lifted up in prayer. Always. When you get to that point where you just can’t pray on your own and you just want to weep and yell and cry and blame. We are here. We are praying. God bless you and your family. Big hugs from Iowa.

    1. Mandi, I’m in tears as I read your message. I know I am being lifted up in prayer. I don’t think I could get out of bed if I wasn’t. I thank God every day for people such as yourself. People interceding on our behalf because we are too tired to utter a word. This week has been a whirlwind of emotions. Ive hit every high and every low. But eventually I’m at a place of peace. Only because His grace is sufficient. Thank you for taking the time to message me, it means the world to me. God bless you and yours!!

  44. thank you for sharing your story. I’ve never thought of myself as a “good” prayer, only because I can’t ask for what I want. God knows what is in my heart and so when I pray, I pray that his will be done, and that whatever his will may be, that he helps give strength to those who may not favor the outcome. Your story and your decision on how to live this chapter of your life story is beautiful. You are a strong family of God, and He will provide for you during this journey. I will pray for your son, and for your family, and I KNOW your son will touch many lives in his life, no matter how short that may be. God Bless you all…

    1. Brinkley, thank you so much for your encouragement! He does bless us with strength to get through whatever lies before us. And he does know our hearts true desire and although things don’t turn out the way we plan, it doesn’t mean we won’t get through it. We appreciate your prayers very much. Thanks again for reading and may God bless you too. 🙂

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