It’s been ten years.
Ten years since my husband collapsed and left the doctors baffled. Ten years of us juggling vitamins, managing symptoms, me insisting on naps and good meals. Ten years with no answers, then partial answers, then what seemed like the answer (narcolepsy dx, about 5 years ago). Sometimes symptoms have gone away, for months or years… and then there’ll be something else that seems reminiscent of the first time.
Maybe I relaxed too much. Maybe the dx made me think we were past all that.
But last week it all converged. The once-random-eye-twitch became severe eye pain. The tremors went from barely noticeable and short to severe and hours long. And this morning my husband had tremors for hours… all through teaching Sunday School and church… probably darn near terrified the people in his class.
And here I sit, nursing a cough, home with our 5 littles who are getting over the cough I now have.
The thoughts swirl:
- Is it MS?
- Is it his meds?
- What’s going on?
- Just when things feel settled…
- Am I going to be a widow?
- How are we going to tell people?
- Oh goodness we’re pregnant with our 8th child.
And then that last one… maybe because my heart is more trained in my attitude toward children than any other area… reminds me:
Center your heart on truth, girl.
- God is good.
- He is faithful.
- He never leaves His children begging for bread.
- You don’t have to grasp to control life. He’s got it under control. Always.
And the tears come. Again.
- His hands are shaking, Lord.
- The fork arrhythmically hits the plate through dinners.
- His fingers keep missing the computer keys he means to hit. Thank God for voice-to-text, he says.
- Is it safe for him to still hold Luke?
I feel all swallowed up, whole. Despairing. All I can do is lay on the couch, eyes brimming.
Why are you crying, mama?
I just feel sad, baby.
And then at the grocery store last night, I passed the man who reeks of pot. His eyes glazed over, a dull expression on his face, he’s browsing for beer.
Dear God, there are so many people who need you. Who might not know of or ever taste Your goodness. And here I am navel-gazing and despairing over a godly man who loves me and loves our children. Even if the worst happens, we both know because of Jesus we’ll be together for eternity. And I’m sad. Why should my heart be sad? You’ve given us an amazing adventure so far. Far more than we ever deserved.
But LORD! He’s the only one who knows my jokes. All the reference points of our lives. The train station conversation. The collapse of tears because of Cracker Barrel. Leaning forward to will the Vanagon along. Mile marker 15. Our landlords standing on the front lawn opening their mail with rubber gloves and masks on because of Anthrax. The sermon that changed it all… and that only gets us to year 4 of our marriage. No one else knows it all, but us. LORD please don’t take this man.
Oh God, what a selfish heart I have. This sweet man is shaking non-stop and here I am worried about me.
Time to do the next thing.
And on and on it goes.
This post really doesn’t wrap up well. There are no answers for now. Just waiting. We’re currently waiting for #3 of what will be 5? 6? 8? appointments.
Less than 10 days ago, my husband was just peeing a lot and we couldn’t figure out why. Now symptoms are piling up higher than a hoarder’s closet.
I’m just trying to let in a peek into our real lives, today, amidst the Q&As and sharing insights I believe will be helpful for young mothers. It’s not tied up with a nice, neat bow.
Y’all pray with us please.
I feel ever so much weaker than I did 10 years ago. Then, I faced these things with great faith and confidence in God, amidst tears.
This time around, I am prone to navel gazing and maybe too, it’s that I’m old like Moses. I’ve seen enough to know this could be a hard battle. I know this life is not hearts and flowers. I look in my kids’ eyes and wonder what road God has planned for them.
I know He lays down the best paths, but sometimes the best paths on earth are still painfully hard to walk.
I need other people to hold up my arms. Or something.
Dear Jess, first of all Congratulations on the new precious one. I am praying for you! I have an area of understanding in this because my husband has type 1 diabetes. I have felt and fought all of these same thoughts and fears. The joy of the Lord will be our strength! You have been such a source of wisdom and information in my life. Thank you for being obedient to that calling. I will be holding you and your husband up before our great and loving Intercessor.
Love from Pennsylvania
Jesse
Jess, I am praying today and will be continuing to do so. What a hard place the Lord is putting you. Praying for medical answers for your husband, peace and health for you and your little ones, moment-by-moment strength for you as you will be tired as you grow your little one, and that God’s goodness would be supernaturally sweet to you in this time of the unknown. I wish I was closer so I could make you a meal or keep your little ones, but I know your church family will minister to yall! Love and prayers from Kansas.
Standing in the gap with you and your sweet family, Jess. What an honor. So thankful for your transparency. It is then that we will see just how big our Jesus is. Weeping with you today, rejoicing with you when the Lord answers.
Praying for you and your family today. You have been a blessing in my life through your blog. Thank you for your faithfulness.
So sorry to hear all this. Praying for y’all.
Praying for answers and comfort.
Jess, congratulations on your new little one! Sometimes it’s the fear of a disease (my sister-in-law has MS), sometimes it’s an accident in the blink of an eye. Last year my husband was in a car wreck the day our fourth child (they were ages 3 and under) turned 7 weeks old. God miraculously spared his life, but it has been a hard (at times very long) road to walk, and we’re looking at more surgeries in the both near and far future. I will never forget the gut punch of a stranger calling me from my husband’s phone to tell me he’s been in a devastating accident- gazing down into my four children’s faces as they waited for breakfast, wondering if they were about to lose their father, wondering how I would provide for them if they did, wondering how I could ever walk through life alone (he and I were only in our mid-20’s). Praise God, that was not the case at the time, but I know that what we’ve walked through over the past 14 months we’ve only come through by the grace of God. By His strength alone. He knows your heart, Jess, and He who has been faithful and trustworthy at every other faith-shaking moment of your life is still worthy of complete faith and trust now. No matter the outcome. So yes, just do the next thing right now. And find your comfort in the One who is our Comforter.
And never forget that the prayer of a righteous man available much. He I sour father and He delights in us. Bring your petitions for healing, for a life on earth together with your husband, before Him, trusting in His wisdom and will but knowing that His desire is for you and never against you.
Love your husband, love your children, and in spite of all that is rocking you, strive to enter into His rest. He is good.
Praying for your husband, praying for the doctors to have wisdom , and praying you find comfort in the One who loves you. He is faithful and will not leave your side…
Thank you for sharing. I will be praying for you to get answers and help, and yes, that your arms will be held up daily and moment by moment.
Dear Jess, I will be praying for your family.
I pray that the Lord will give you all answers as to what’s causing the symptoms your husband has and that he will be able to get appropriate treatment. I pray that in the midst of all of the unknowns, the Lord will guard your hearts against despair and will enable you to trust Him fully for He loves and cares for you. I pray that you will rejoice and bless the name of the Lord. I pray that He will deliver you from all your fears (Ps. 34:4).
I’ve felt that gut punch, years ago now. My husband collapsed in a seizure at work and it was discovered that he had a brain tumor. His father had passed away from brain cancer just a few years earlier, so it was extra scary. My husband had surgery (twice) to remove the tumor, and, praise God for His mercy, it was not cancer. He is well now. But I vividly remember the phone call that came as I was nursing our 3 month old son, telling me that my husband was being taken to the hospital. I remember the fear gripping my heart.
But I also remember how God sustained me/us through the truth of His word that had been laid up in our hearts and minds over the years, through dear friends and family who ministered to us during that time, and even through people around the world who wrote and sent cards and PRAYED. He will sustain you, too, through whatever may come. Many are praying for you.
And congratulations on Baby! 🙂
Living our family in prayer, Jess! Praying he doctors have wisdom, clarity, and love while they treat your husband. Also praying that you would be overcome by Gods peace and rest during this time. I so appreciate your posts and have grown to love your family!!
Hugs from Iowa!
Praying for your sweet family….
Healing, rest, strength in the name of Jesus!!
Hi Jess, been reading you for years, and just wanted to drop you a note to let you know that I am praying for you. I don’t know why these things happen but I do know that God loves you all so very much xxx
I’m going through something similar, but it’s me who’s in the middle of a possible MS diagnosis. I totally hear you. Praying for you.
And congrats on baby number 8 🙂
Oh, Jess, my heart is full for you! Full of joy at the new baby, full of grief at the uncertainty and fear surrounding your husband’s symptoms. Please know that I am praying for you and your family.
Dear Jess,
Praise the Lord for Baby #8! I am so thankful you shared where you are, because I will pray diligently for you and your husband. Illness and the deep despair in its shadow have been a part of my family’s life that recently reimerged with my husband’s Crohn’s disease and kidney stones. Your title of Gut Punch is so accurate. I pray you will get answers and feel Gods hand right where you are.
Hebrews 12:1-3 speaks of running your race with endurance and looking to Jesus, the founder and perfector of our faith. When it crumbles in on you, look to Jesus, he is perfecting your faith. He is there. It’s crazy hard, but He endured such hostility from sinners so we won’t grow weary or faint hearted(Heb 12:3).
Look up the song ‘We are Not Overcome’ by Bifrost Arts. It is a balm for what hurts.
I’ll be praying for you, your husband, and your family. Thank you for sharing. You are an amazing mama. I’ll hope to hear that you have answers soon. And congrats on the newest little one!
May our Father hold you up in this time of uncertainty and all that it entails. I am, and will be, lifting you and your family up in prayer. May His peace surround you as you lean into Him. ((Hugs))
Oh Jess,
I’m so sorry for the unknowns. This is something that always makes me struggle, not because we don’t have a knowledge that the Lord is in control and He is faithful, but because our minds can come up with some crazy scenarios as we wait. I praying for peace to fill you as you meditate on God’s truth and love. And congratulations for #8! You are so amazing. I love you sister and will lift you and Doug up daily. Keep us posted.
Jenny O.
Oh, Jess, I’m sorry. No, you don’t want to remain in the posture of navel-gazing, but you also don’t have to minimize what’s going on. God is good *and* life is hard. Praying the doctors would have wisdom and that your family will have peace no matter how things play out.
Praying for you all. For peace of mind as doctors seek answers. Remember to think on things that are TRUE. Will pray God will guard your heart and mind from thinking beyond those things. I know all too well this isn’t easy!!! So glad we can walk this life with you. You are far from alone as you muddle through this!!! <3
My dear friend and sister,
We are so sad to hear of your struggles with Doug again. Our family is already praying for each one of your family.
Keep in mind your struggle is not against flesh and blood but against the rulers and principalities of the unseen world. We will stand in the gap for you all as you face what the enemy throws at you. Stand faithful in His sight, unwavering in your faith. We love you all.
Congrats on your precious new baby! I can’t imagine what you are going through right now. Harding your arms up in prayer now! Please keep us updated on ways to pray!
Thank you everyone! I feel so lightened and encouraged by all the prayers and words of encouragement. Thank you.
Opening up in vulnerability feels so risky, and I kept asking myself if I was exposing too much in sharing this– but it is so valuable to have people pour in encouragement and Scripture into all the vulnerable places. Thank you all.
Oh Jess, I’m so sorry your family is having to go through this. Praying for peace, comfort, and healing, and praying that God’s people will surround your family with love and support. Congratulations on the new precious life in your family.
I am praying that the Lord will give you peace, regardless of what comes. His ways aren’t always easy to understand, but I know that He is good and trustworthy. I’m praying for strength and courage for your whole family, and complete 100% healing for your husband!
Prayers for you, Doug and all the family as you go through this. Love to y’all.
Just read your post and I’m so very sorry. Praying like crazy, with tears! From a mourning mama who is also trying not to navel-gaze.(: By grace alone!
Thank you for your transparency! Sometimes it helps to get it all typed out, and out of your head a little bit. Plus knowing you’re not dealing with it alone. Health issues and medical “mysteries” are a big area of anxiety for me, so I understand the vacillation between “God is sovereign over every molecule” and panicked “please don’t take my husband/my child/me!” I like to have answers to pretty much everything in life, so when there is a health concern, or vague symptoms, I get really uneasy about what the right thing to do is. Am I overreacting? Or could this be worse than I think? I just read some story about so-and-so who died of______. Should I go to the doctor? Should I have my husband get checked out even though he isn’t worried about it? Does [insert child’s name] seem to be acting strange? etc. Fear is paralyzing… and it is SO HARD to keep “taking your thoughts captive” over and over and over. I will be praying that you will be able to do that. And also that you will have wisdom for what to do., along with the doctors.
PS was this your first baby announcement or did I miss something earlier? 🙂 Congratulations! Although I know that is a lot going on all at once…!
I am a friend of Carrie and Melissa and want you to know that I will be praying for you and your sweet family. We have been to your church and have seen what a blessing it has been in the lives of our friends…may God give you the answers you search for, may He give the doctors wisdom to find the cure. Mostly may He give you faith to stand strong and wisdom to guide you. Kim
Thank you for sharing. We will be praying for you, Doug, and your children.
Hi Jess
Congratulations on the newest one!
Life can be so hard sometimes. And it is so easy to focus on the pain, cos it hurts! But Jesus knows EVERYTHING! From what is going on with Doug, what your new baby will look like and how much you are hurting. I have lived through cancer and yet, even now, when God has given me three small blessings, it is so easy not to stand on His Word, but to give in to fear. I’m currently trying hard to stand on Jeremiah 29:11. That whatever happens, God has planned it.
I will pray for peace, and for wisdom for both you and the doctors. Thanks for being an encouragement!
I had no idea! I will be praying for you, and thank you for sharing this with us, your readers.
Yes, Jess. Do the next thing. Do the next thing. Do the next thing. You know what is true.
Praying for healing, and trusting with you that God is good and sovereign no matter what He ordains.
What a strange world we live in where someone across the globe can share our life. I thank God for the honour of being able to share in yours through your blog. I have never met you but reading your post I was crying with you. Will be holding your arms up in prayer, Jess. Do not lose heart.
I am joining my brothers and sisters in prayer for you and your family. I a masking the Lord first for healing, next for an overwhelming, saturating peace in the midst of scary, and finally for accurate answers ASAP. I will fervently pray for you guys every time the Lord brings you to mind! Your names are written in my prayer journal. You are loved!
Praying that God will be your refuge and your strength.
You have been a great blessing to me through your blogs, which I have been following off and on for several years. Thank you for being so open and vulnerable. May the Lord bless you, Doug, and your children, and may you find Him faithful, a very near help in times of trouble, come what may. May God give you the grace to cling to Him and trust in His goodness, even when you can’t see where you are. May God provide for your every need, whether for knowledge, wisdom, peace, health, money, material things. And please give us updates when possible so that we can keep on praying!
*****Follow-up 4/9/16 for anyone who might read this far: *****
Doug continued to have difficulties and we ended up coming to an ER at an excellent hospital in Portland. They admitted him to neurology & did a number of tests, including an MRI. All tests were negative for anything permanent or life-altering, and over the course of the week, as they weaned him off the medicine he takes for narcolepsy (adderal), they came to the firm conclusion that he’d had a toxic reaction to the medicine.
He’s slowly but surely making his way back toward coordination in his walking/gait, and his arms are having less tremors by the day. He is likely to be released from the hospital tomorrow evening.
The only prayer request at this point is that he would continue to make progress back to normal coordination and that we would find a suitable alternative for his medication that is both affordable and effective.
Thank you all for praying with us and caring for us. It has been encouraging to get your notes and comments and emails from around the globe.