Last night I did something that I decided (early on) that I would never do often… I visited my reality. (Tissue alert.)

I am blessed to be a part of a family support group on Facebook that is strictly for families with children who have PBD (peroxisomal biogenesis disorder). These are some of the most brave and amazing people you will ever meet.  They are also the group of people that you would not trade places with even if they paid you billions of dollars. You see, these people are part of an elite group that have the unfortunate reality of watching their children slowly digress until their inevitable death.

This group has been so helpful with everything we’ve experienced thus far with Gideon. They’ve answered questions about his hearing aids and many people have messaged me personally to offer support. However, I have a confession to make.. When I see a post come up where a parent is calling on the angel parents (parents who have laid their children to rest), I steer clear. I refuse to read them. It’s TOO much for me right now.

But on this rare occasion, I had been feeling sorry for myself because my son hasn’t slept since he was born, so I decided to read the post….and the comments that followed. My gut is still in knots and the tears are still fresh on my face…and shirt…and table. This one brave mother posted that her son has begun to experience discomfort and he’s on oxygen for 24 hours because if not, his fingers turn blue; he’s also not able to cough because he’s losing muscle tone….Basically she was calling on the angel moms to ask how she should be preparing for the end… The comments that followed were heart crushing stories and words of love and support. Are you crying with me for this mom?? Please pray for her. She reached out to the support group because her dreaded reality is now; and it’s the reality that we “newbie parents” (newly diagnosed) fear the most.

I know my posts are usually more positive, but right now I need the world to know this is still hard for us. With tears in our eyes, my husband and I were discussing which is worse… watching our son die a slow death or trying to explain the situation to Laynie when that time comes? Now I know what you’re all thinking, You’re not there yet! Don’t borrow sorrow from tomorrow! And praise God we’re not living that hell just yet. So why would I even go there? I still feel a need to visit that reality from time to time for two reasons. Reason #1: It keeps me out of denial; Reason #2: It keeps everything in proper perspective.

I feel as though we’ve been handling our situation very well. I speak for me and my husband when I say we truly feel the peace that surpasses all understanding (Philippians 4:7) and God’s grace has been sufficient (2 Corinthians 12:9). But I need to confess it’s easy to handle a situation like this when my son is progressing. He doesn’t have a feeding tube, he’s not blind and (completely) deaf, he’s not on oxygen, he’s not having seizures, and doesn’t require suction. But those are just some of the realities for PBD kids. And unfortunately, there will come a day when my son’s progression plateaus. And then he will digress…he may have a few or all of the problems I just listed… And then it will be our turn to call on these brave parents who’ve gone before us.

You see, I realized last night that one day this group will encourage us as we watch our son slowly die. And after Gideon’s gone to be with Jesus, we will walk beside other families as they navigate this unfair, unthinkable, and ugly road.

Please forgive me. I know this is probably the most depressing blog post you’ve ever read. And if I’ve made you cry I apologize. I couldn’t help myself…I needed to vent. And I have to confess, my recent reality check has left me with a whole new perspective on my lack of sleep. As I sobbed and rocked my baby boy to sleep last night, I couldn’t help but think of all those angel moms who would give their right arm for one  more chance to be sleep deprived, rocking their angel.

As I sat down at my computer to write, the Bible Gateway website was up and go figure, the verse of the day was Romans 5:3-4

“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.”

To put it plainly, I feel like the Lord was reminding me that our hope is in Christ alone. (I honestly don’t know how else we would survive this without Jesus!) And I can’t help but believe that someone needs to know about that hope. I like to think that my mighty warrior’s story is bringing people back to God. Has his story touched your heart? I hope so. If it has would you share it with someone? Nothing makes the reality of this genetic disorder any easier, but knowing that his life has offered someone hope, brings joy to my heart…to Kevin’s heart…and someday, hopefully to Laynie’s heart.

Visiting my reality has given me a proper perspective. Casting Crowns, Already There song says it best-

When I’m lost in the mystery
To You my future is a memory
Cause You’re already there
You’re already there
Standing at the end of my life
Waiting on the other side
And You’re already there
You’re already there

And because He’s already there, I don’t have to live in fear. He’s waiting for my little man, just like He’s waiting for me.

The reality is that you and I woke up this morning by the grace of God. He’s given you and me this precious gift of a new day. I don’t know about you, but I intend to make the most of every opportunity.

I hope you’ll do the same.

38 thoughts on “Reality

  1. I will share your story and God’s message of an eternal hope.

    My dear friend shared with me the struggle of a couple from her church. They too are facing a journey – their unborn child has been already diagnosed with spina bifida and are heading toward an in utero surgery. Like you their story has encouraged and challenged me to see God as greater than the limits I place on Him in my view. The father shared this – “I attended a conference a few years ago to listen to one of my favorite authors at the time, Brennan Manning. I remember a story he told that I feel like The Lord is really reminding me of during this season. To summarize, a man in the oil industry went overseas to the middle east to do business with one of the kings who ruled over the oil fields. When business meetings were over there was one free day at the end of the trip. The king asked how this man wanted to spend his final day in the Middle East. He said he would love to play a round of golf. The king said his men would pick him up early to play. The next morning they arrived at the course. The man commented on the quality of the course and the king told him that because it was such a pleasure doing business with him, as a token of his appreciation he bought the golf course for this man. He closed with the moral of the story: “When in the presence of a King, ask for big gifts.” I sometimes squash my belief and hope by placing human limits on what our Lord can do. Today I really learned to ask for big gifts and saw the results in a real step with my own son. Bless you and your family and thank you for reminding me of our true hope.

    1. Thank you Amy for sharing this. I will be praying for your friends and their sweet baby. God bless you for your encouragement to me this morning. 🙂

  2. Praying for you tonight and I needed this tonight! You are so well spoken and always give us a sense of God’s peace, our humility and thankfulness. I was telling my husband how awesome it is how you are using this to share the gospel. Continue letting Christ speak through you and cast all your anxiety on Him, because He cares for you!

    You’ve probably heard this, but it’s just a great cry out to God and a sense of peace giving it all to God. Lord I Need You – Matt Maher
    “Lord I need you, Oh I need you, every hour I need you”
    “When I cannot Stand, I fall on you, Jesus you’re my Hope and Stay”

    I was listing to a sermon the other day actually on marriage, and it was talking about if our marriages were so easy and perfect why would we need God in our marriage. And that actually having a difficult marriage could lead to greater eternal benefit because we would have to rely so much more on God. Every difficult trial in our lives is there for a reason for us to rely upon God and lean on Him. What a true blessing to be able to give this all to God the creator of the world the one who knows the future and loves Gideon more than you do! I pray God gives you peace and that you’re able to give it all to Him. Let God guide you in HIS perfect plan.
    Matthew 11:28-30 ” Come to Me, all who are weary and heavy-laden, and I will give you res, Take my yoke upon you and learn from Me, for I am a gentle and humble in hear and you will find rest for your souls. For My yoke is easy and My burden is light.”

    I encourage you to look through some of the Psalms, so many of them are a cry to God to “listen to me Lord hear my cry”. I don’t doubt that you have said that same to thing to God, but I hope that knowing in God’s word they are saying the same thing brings hope knowing that he does Hear! And He has written these Psalms for you to read.

    Always thinking of you. In Christ’s Love, We love because HE first loved US!

    1. Thank you Jacey!! Your encouraging words are a blessing. I do love those songs you mentioned and Psalms! I also love what you said about marriage, it’s so true of every area of our lives isn’t it? Thanks for also reminding me that God loves Gideon more than I do. I sometimes forget, even though my heart knows it true. Thanks for blessing me this morning my friend! God bless you!!

  3. I really felt GODS presents this A.M. while reading your blog.Through my tears I read your words.Honey I wish I could be there more to help so you could get more sleep.We love you’se dearly. Mom and Dad

  4. Sam – I am so glad you found me on Facebook; I read your blog and listened to your testimony – amazing, and you are so brave. The Enemy wants nothing more than to silence you, but in Revelation it says that we are overcomers by the blood of the Lamb AND the word of our testimony! I will be praying… I love to pray scripture, and I am so thankful that God says His word does not go out void but accomplishes His purposes. I have a scripture that I cling to when my hope is dim… “May the God of HOPE fill Samantha with ALL joy and peace in believing, so that by the power of the Holy Spirit Samantha may abound in hope.” Romans 15:13 I love how this verse says that not by your own will and strength that you will have hope, but only when you cry out to God for it and access the power of the Holy Spirit — what a relief 🙂 I am so sorry for everything you are going through…truly! I am so thankful for the hope in Christ though, and for His intense LOVE for His little children! Praying! xoxo!

    1. Thank you Ashley! I’m beyond blessed by your words and prayers. What a great verse to cling to indeed!! Thanks for taking the time to encourage me- I’m very grateful. I love the photos of your precious family!! Thanks again and God bless you and yours. 🙂

  5. Wow…prayers for you and your family. I cannot even begin to understand or fathom what you are going through. I did, however, lose my wonderful daddy very suddenly when he was 45 years old and I was 20 and only 6 weeks into a new marriage (which he performed:) I have often thought that it would have been easier if I had known that he was going to die and could’ve said all the things I wanted to, loved on him more, appreciated our time more, and had closure to say goodbye…I have also thought that it would be so gut wrenching to watch him die daily and in some respects was thankful that we didn’t live our days waiting on it to happen. Obviously, there are pros and cons to both sides of that coin. I pray that you will find complete peace and comfort as you live out God’s plan for your life. Your posts are a blessing and encouragement to me!! I often try to remember when I let myself start asking the “why” questions,
    1 Corinthians 13:12, “For now we see in a mirror dimly, but then face to face. Now I know in part; then I shall know fully…”
    Hope that helps you in some small way. Love & Prayers for you:)

    1. Thank you Leslie. I think losing loved ones is hard either way. This may sound silly but t’s kinda like hair…girls with curly hair want straight hair and girls with straight want curls. I think we all wish we had time to say goodbye and yet the thought of watching them suffer hurts too. They’re both painful situations no matter how you slice it. I’m sorry to hear about your dad, but I appreciate you sharing your story with me. I bet he was an amazing man. 🙂 It’s always encouraging to know that others are praying for us and my little man. Thanks again for taking the time to message me. God bless you and yours.

  6. Thank you for sharing the truth, the reality that faces you. I know you only through your blog, and it’s easy to be amazed at how God is carrying you through this and lose sight of what you are really going through; I too need the reality check that our/my prayers are crucial every day for you. I’ve been meditating a lot lately on “blessed are those who mourn, for they will be comforted.” So easy to avoid mourning by denying reality . . . but then we’d miss the blessing God has for us. Thank you for letting us mourn with you by being real even when it’s hard.

    1. Thank you Kristi for your encouragement. I thank God that you and so many others are praying for us. Thank you for the reminder about mourning. I have a dear friend who reminds me often that even Jesus wept. 🙂 God bless you and yours. And thanks again for messaging me.

  7. Sam, I have always been amazed by you. Right now, as I’m typing through tears, I am once again amazed by the story of Gideon, and the story of Gideon’s parents. If new scriptures were being added to the Bible today, I wouldn’t be surprised if God included you and Kevin in the Hall of Faith in Hebrews 11. Actually, I think He did…in the list of the unnamed heroes of the faith. Praying for all of you!

    1. Thanks Dretha! I love and appreciate you so much. All you’ve done and continue to do for me. You’re amazing.

  8. Found your blog via a link in which a friend was tagged on Facebook. Enjoy your beautiful posts, and I share your blog from time to time with another angel mom, who lost her son suddenly at age 21. She finds comfort and beauty in your blog. I wanted you to know.

    1. Stephanie, thank you so much!! It means the world to me that someone else finds comfort and beauty from my little man’s story. Thank you for blessing me with this information!! And thanks again for sharing. 🙂 God bless!!

  9. I just wanted to reach out and tell you that your story touches my heart and your family is in my prayers. You are so eloquent and I look forward to getting you new blogs in my inbox. I love how you tie all of your experiences to Scripture and you are using your journey to spread the gospel. You are so strong and inspiring. Even when you are weak, He is making you strong. Virtual hugs to you and yours, and I will continue praying for your family. God bless you!

    1. Thank you so much Erin! It blesses me to know that you’re praying for us. Everything within me has to tie it all back to Jesus. If I didn’t what a waste my little man’s journey would be, huh? 🙂 Thank you for taking the time to write me. You’ve encouraged me so, and I’m extremely grateful. God bless you and yours!!

  10. Sam, this is Molly’s mom. I am overwhelmed with admiration for you and Kevin. I have tried to think how I would react if Gideon were one of my children or grandchildren and I can only hope I would be able to lean on God and draw strength from Him as you have been able to do. I am afraid I would fail miserably. I cannot imagine the pain and suffering you are experiencing but you will never know the blessing you have been to
    me. Thank you for allowing us to see how God is preparing you for whatever the future holds. God has chosen you to be a witness to so many and even though we cannot understand the “why” of Gideon’s disease, you have shown us how important it is to lean on Him every step of the way. God has carved a special place in my heart for Gideon. I love seeing all of his accomplishments and I grieve at the reality of this disease. I have stenciled my favorite Bible verse above the doorway in my kitchen. It is Psalms 46:10a “Be still and know that I am God.” It has been my “go to” verse for many years and I hope it will in some way be a comfort for you. You, Kevin, Lanie and Gideon are in my thoughts and prayers everyday.

    1. Vicki, thank you so much for your encouraging words. You blessed my heart and I’m extremely grateful. Not to deviate from the wonderful things you wrote, but I have to say that you have the most amazing daughter. She’s been through some tough stuff as well and she’s still a testimony to the love and grace of Jesus. I just love her so much!! Thank you for molding and shaping the woman I call my friend.
      I appreciate you taking the time to message me. Your kind words means the world. It’s true what they say about His Grace. You never understand it, until the moment you need it and then like magic, it’s there. 🙂 Thanks again for your prayers and for being such a blessing to us. God bless you and yours.

  11. 16 years ago, I had an angel that was born with a chromosome disorder. When we removed life support instead of going straight to Jesus’ arms as we were telling her, she just looked at us and stared – like she was saying, I am not finished here on earth. We were able to take her home for 5 wonderful days. She too did not sleep, as I still look back on those days, it was as if, she was saying, I won’t be here long so I want to soak up as much as possible and be with you as much as possible. When you lose a child you become a member of a club that nobody wants to join. It is a ministry that you would not have ever signed up for but God knew better. He knows our hearts. These parents will reach out to you when the time comes, and in turn you will be able to reach out to others. When it was my time to reach out to someone, I told them that I knew that their heart was hurting and they understood what I was talking about. As hard as it still is to write these things or say these to people on if you have gone through it do you understand. I hope this will help at some point in your journey. Soak up all those late nights that you have with him.

    1. Oh Sheila, I had to read your comment so many times because I couldn’t see for all the tears. Even now as I type this, I’m crying. You’re such an encouragement. From the depths of my soul, thank you for sharing your story. You’re so right…I would never sign up for this club. Even knowing that my son’s story blesses others, I still would trade it for another ministry. Unfortunately God didn’t ask us, right? It means the world that you took the time to message me. I will soak up all I can. Thank you, thank you, thank you. God bless you and yours.

  12. Please do not apologize for not always having positive, up beat posts. Your reality is so hard to comprehend, you have every right to have moments of saddness, being scared, and putting it here to get it off your chest. I pray for you and your family and especially your little boy, as much as my heart aches for you and your husband. I weep for Gideon, I hope his little life is filled with joy and happiness and he does not suffer. As a stranger I wish I could help so he never feels pain or discomfort, I can only imagine how you must feel when you slip into your reality. Keep your head up, you are amazing. All my love to you and your family.

    1. Thank you Denise. I appreciate you saying that. A dear friend of mine got onto me today because I apologized too much for how I feel about my situation. I never want to bring anyone down when I’m having a down day. So thank you for encouraging me in this and allowing me to be open and honest. I appreciate your prayers for my family as we travel down this road. You’ve blessed me today and I’m so grateful you took the time to write me. Thanks again and God bless you and yours. 🙂

  13. Oh my sweet Sam,
    I read every one of these and I often lack the knowledge to say the right thing, so mostly I don’t.
    Because I know there are no words that can make this better.
    I wish I knew the right thing to say.
    What I can tell you is that you have an ARMY of people praying for peace for you and Gideon and all of y’all.
    That there are people around the world reading Gideon’s story, being touched by it, by you.
    That your sweet warrior is touching more lives than you’ll possibly ever know.

    Love you dear friend and I’m continually praying for you all.

    1. Thank Mama B! Your words have lifted me so and I’m beyond grateful for your love, prayers and support as we go through this. You don’t ever have to have the “right” words to encourage a friend; by just expressing your love, you do more than you know. And that army is largely do to thank you again!! Thank you for making Gideon’s story accessible to so many. I love you so much! Thanks for messaging me, and encouraging me. 🙂 God bless you and yours…especially those sweet little men in your life!!

  14. My heart swells with love, my eyes with tears. Yours–and Kevin’s– testimony of faith, love and perseverance has touched my soul. I lost a sister in an accident when I was 15. A very good friend and classmate of Kevin’s. Her name is Deanna and she was 13 years old when she went to be with Jesus. I do not know if you can ever prepare yourself for the loss of a child. I know our family unit has never been the same–but it has been stronger in many ways. We relish the memories, talk about her, and remember the good times! Praise God! I pray for you, Kevin, Laynie, and Gideon. I have said once before that God chose the right family for His child. Have a blessed day.

    1. Melissa, I’m sorry to hear of your loss. That must have been awful. I feel as though Kevin has mentioned Deanna before. You’re so right, nothing prepares you for that kind of tragedy and I can’t imagine a family ever truly being the same afterwards. An angel mom once told me that “the loss of a child will forever change you; it’s up to you as to how.” Thank goodness your family knew the Lord during that time. It doesn’t make it easier, but I think it definitely gives hope..Hope that we can see those we love again someday. Thank you for sharing your story with me, thank you for your kind words, and thank you for your prayers. God bless you and yours!

  15. I think I could mostly relate your blog post to humbleness. Thank you for sharing Gideon with us and for sharing your faith. My son was diagnosed with Infantile Spasms (seizures) and battled them for 8 long months. We never thought he would stop having them. This past July we celebrated 1 year of seizure freedom. A day I wouldve never imagined. When he was diagnosed I clung to my faith or what little I had and my husband totally opposed the Lord, it was a trying time for our relationship. I couldn’t imagine going through that without Him. It is still hard for my husband even though Jo has made such progress. I found the support group for IS helpful as well and also difficult when I saw others lose thier children due to complications with IS. Cling to HIS hope for you and your family, and your precious Gideon. Trust that you all are not alone at least in prayer! Thanks again!

    1. Thank you Genevie for sharing your story! Wow! I’m so glad he’s seizure free!! And praise God for working in your marriage as well. I feel fortunate that my husband prays with me through this. I’ve always been fond of 1 Peter 3:1 “Wives, in the same way submit yourselves to your own husbands so that, if any of them do not believe the word, they may be won over without words by the behavior of their wives,” I’m confident that your faith and actions alone will win him to the Lord. It takes a strong, godly woman to go through something like. God bless you as you journey on. I will pray for your family and that your husband would come to know Him intimately. I will follow your example and continue to cling to Jesus. God bless you and yours!!

  16. Thank you. Thank you for making me stop in my tracks to say a pray for you and your family, and the other families facing the same reality. Thank you for helping me put my problems into perspective. & finally, thank you, for being a beautiful example of a woman of faith. I know 100% that these words are not comforting, but I feel the need to say them anyway. There is a purpose for this. There is a purpose for sweet Gideon’s life. & there is definitely a purpose for you and your husband being his parents. Seriously, God bless you and your family. You’re in my continued prayers.

    1. Oh Alexandria, but they ARE comforting!!! And I do trust there is a purpose in this. If we didn’t believe that, how sad would this world be, right?? Thank you for taking the time to read this and message me, but thank you even more for lifting us up in prayer. I can honestly say I think God uses the prayers of His people as a means of carrying us through this. Most days are not like yesterday. I don’t focus on the sadness that is to come, but every once in a while it hits me like a ton of bricks. God bless you for lifting me up today. I am comforted just knowing there are others out there who are lifting up my little warrior. So thanks for taking the time to let me know…I truly appreciate it Alexandria!!

  17. Our God is so good. I’m praying for your family, that you will find joy even in the midst of heartache. My heart breaks for you.

  18. I am humbled and grateful to know you and your amazing family, Sam. Thank you for sharing your heart on good days AND on bad days…it’s so raw and so real. Your precious mighty warrior is making differences in the lives of people that you will only know on the other side of heaven. Prayers continue for each of you. Thank you for allowing God to use your lives to encourage and love others. I love you guys dearly.

    1. Tanks Melanie!! I just love the mess out of you and your family as well. You’re an amazing friend and sister in Christ! 🙂

  19. As I read your blogs, YES, I do read, I am always left speechless. A common feature that we definitely do not share is the ability to write. ( I spelled it correctly right? 😉 ) You have always been the intelligent one and I am totally okay with that. Lol. Now what is my strongest character trait? Incase you forgot I slipped a key word in the last sentence. You know what it is. I hope you finally relize, that one character trait that you grew up admiring me for runs throughout your veins as well. You, Samantha “The Listener” are now a Jolicoeur “Happy Heart”. But the blood in your veins is the same as mine. It has always been clear to me and now very obvious and clear to everyone else, we are blessed
    to be Bryan’s… The Strong ! And I quote, “little did we know how well your name would fit.” – Carol Bryan
    Love y’all sis !

    1. Oh sis!! Only you can crack me up and make me cry at the same time. I love you so much and I wouldn’t be the person I am today without you being a model of what it means to be strong. No one has looked into the face of adversity like you and has come out on the other end smiling. Thanks for always choosing happiness despite your circumstances. You’ve been showing me all along what it means to choose my attitude towards life no matter what comes my way. I love you so much. More than words can express.

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