So I’ve been debating the creation of a blog…to keep everyone in the loop, to bring awareness to Grant’s conditions, and to share my experience as a mom of a medical mystery to help others. I will also chronicle the struggles of frustration, guilt, second guessing, over-analyzing, and the balance of being a mom, a wife, working, and making sure the house doesn’t look like a complete disaster. So here we are…day 1. It will be short and sweet because Baby Grant could use prayers and I will use future posts to explain his history.
He is 16 months old today. Tomorrow he goes for his 4th and 5th brain MRI, his 2nd lumbar puncture (spinal tap), and his 1st lower spine MRI. That alone is enough to make anyone, parent or not, flinch. Luckily it will all be done under one anesthesia procedure, but that also means he will be under for longer, and our anxiety ridden wait for him to get to the recovery room is that much longer.
The strangest feeling is the internal battle of hoping for answers, and simultaneously not wanting abnormal results.
Thankfully he isn’t sick, he doesn’t have any limb paralysis as he has had in the past (to be covered in another post), but we simply noticed that on Friday, he woke up and couldn’t keep his balance. Yes, he’s a toddler, and with low tone and as a fairly new walker, his balance isn’t perfect…but this was different. He was falling over as if he was dizzy shortly after taking a few steps. He was wobbly when walking without falling. He was just different.
With his history, we know different. We know when something is off, and sometimes it’s nothing, and other times it adds to his list of mysterious symptoms with no etiology. We were told by our neurologist to head to the ER, it could be nothing…but better safe than sorry. After the team consulted, they decided to admit us and keep us until Monday to observe over the weekend and schedule scans for his sudden dyspraxia. He has gotten a bit better periodically, but still isn’t himself.
As much as we would love to avoid additional tests, we realize it’s all part of the process at this point. With our experience, all will come back with a normal result, and we’ll be left with yet another mystery symptom. There is a chance of the cause being inflammation resulting from an infection which would clear on its own, so we’re holding onto hope that it resolves soon. Given his history, however, they want to make sure they don’t miss anything more rare. The strangest feeling is the internal battle of hoping for answers, and simultaneously not wanting abnormal results. Each day my mind and heart battle between which would be better, and there honestly is no right answer.
So for now, we ask for prayers and good vibes. Not necessarily for an answer, but for understanding, regardless of the outcome. For continued hope that he will progress instead of regress, and for the doctors and nurses involved in tomorrow’s events.
Let your faith be bigger than your fear.
Living With a Mystery 
Prayers for my baby cousin and continued prayers for you, Tucker, an Connor. Know that you guys have a lot of people praying . And you guys are amazing parents!
Love ya guys
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Lauren, I totally feel for you and know what you are going through. I know how those moments felt waiting for an answer but also hoping the results came back “normal.” I know you don’t know me, but I went to school with Tucker and if either of you EVER need to vent, yell out scream…I will be here because I know how it feels. Prayers for all!
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Praying today and always for your precious family. Tomorrow will go great momma.
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Thoughts, prayers AND good vibes to all of you! I cannot imagine what you must go through daily. Dealing with health issues myself, wondering if each pain is something new or just a sore muscle I completely understand the daily struggle. Good days too!! What I can’t imagine is the worry for your child. That’s a whole new level!! So I will wait to hear how things go…..good luck!!!
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I hope you know how strong you are! With all you’ve went through with your own sickness & now your child’s, it’s very inspiring to see you still able to enjoy & live life & help others. You’re an inspiration. I pray they figure out what’s wrong with your sweet baby boy!
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Lauren – prayers from Australia . I look forward to hearing more from you as we have a son in a similar ( although less severe ) situation xx
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Thinking of baby Grant today! I hope all procedures go smoothly!
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God has a plan, his plan is better than ours. Being a parent is hard especially when you have a sick child and feel helpless. May God give you and your family peace and you find some answers.
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Prayers for your family today and always from the Makela family. We have followed your journey through Tucker’s Facebook. It seems impossible and you already know this deep down, but know that He only gives you what you can handle. Beautiful Baby Grant is your son because He knows your family is what he needs in these moments of uncertainty and fear any that you are the only ones in this world who know how to do this for him. Know that even if our family doesn’t know yours very closely, we feel for you and pray for whatever comes next.
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Thoughts and prayers for Baby Grant and for all of the family. Love, Aunt Anna & Uncle Don
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Sending prayers to you all
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Prayers for strength for all of you and wisdom and compassion for all of his medical team. As Owen’s grandma and other parent, I completely understand the concept of answers vs. normal results. Not having answers is so frustrating. Please know there are many of us out here who love you all and hope and pray daily for your family.
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Sending prayers out to Grant & your family! ❤ Hoping that soon you will have answers ! Keep the faith!!!
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Praying for positive results🙏🏻Thanks for the update!
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We are all waiting positive results for Baby G. You have been through so much already, time for some good news, let this little boy live the norm for awhile. When this is all behind you, Lauren you should think about being a writer! You have a very good way with your words! Praying for answers and peace for you.
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Wow do we know how the longing for answers go! I had to learn early that every member of Owens team that I trusted, only wanted what was best for him. Tests or no tests. You mama are a warrior! I pray everyday for you, Tucker and Connor for strength and guidance. Grant is one lucky baby to have you three in his corner! Praying that these next few tests go well!! Love you guys!
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Sending Prayers for Grant and his family and his medical team. May the answers be given sooner than later. Faith and courage from the heart will always be bigger than fear. Praying all goes well today!!
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Thank you for sharing, you guys are always in my prayers. Please let me know if you need anything at all, even if it’s just a coffee date and a shoulder to cry on.
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Sending healing thoughts and prayers to you and your family and especially sweet Grant.
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Praying for you all. You guys are amazing.
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Sending so much healing, love, strength and pure Divine light to each of you. Especially your sweet Angel. He is so strong, and what a brave soul!! Please let me know what I can do, I’m here love. Prayers are with you and will be with you from now on!! So many blessings.
XXO
Carrie Kirby
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I just love your beautiful family. My heart breaks for you. There is nothing more painful than watching your child every minute waiting for something else to be noticed. My love and prayers go out to all of you. This is not just Grant’s unknown illness…it’s also all of yours. God bless you all and He keep Grant in the palm of His hand. Keep writing, it’s good for you to express what you are feeling. I’ll keep following his progress. Much love, Jeanette
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Keeping your whole family in my prayers. Hoping for progress and better results. God bless you all.
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Send prayers and love to Grant, you and your entire family.
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Oh Lauren my heart goes out to you all….it is soooo hard to be where you are! My prayer is of course for healing for little Grant but while you’re in this process I pray that you will grab hold of the strength the Lord has already given you! We just have to keep our faith strong and seek for an understanding that we can’t see right now! God is always wanting to work things for our good for His Glory! His Grace is sufficient for today and His tender mercies are new every morning! Believe and trust in Him with all you have even when you don’t understand why things happen the way they do……this I do know much about as I still have to work through missing my Shawn so very much! God is faithful and the only reason I get through each day. I will continue to keep you all in prayer! Hug each other for me!
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