Photo by Drew Hays on Unsplash
A guest post by one of my readers, Cheryl. I’m so thankful she is willing to share some of the things she has learned on the tough road she and her husband and family have shared. Honestly, they are pearls of wisdom for all of us!
As we sat in our car in the medical parking lot, somewhat numb and in shock, we wondered what God was doing. We had just been told our 7 month-old son had Lissencephaly. We had no idea what to expect. Married just under 3 years, we had already experienced the birth of our first-born son, the still-born birth of his twin brother, and numerous hospital stays – all before our first anniversary.
Now what was God doing? Didn’t He know we couldn’t do this?
What about our hopes, our dreams? What now? So many questions and no answers, except to trust the One who knew them. We had vowed we would stay together and persevere, no matter what life brought our way. It is this commitment and a gracious, merciful and faithful God that has carried us through.
Fast forward five years and our family now consisted of four boys; our youngest, also diagnosed with Lissencephaly. Our lives revolved around therapies, IEP’s, school and government paperwork, doctor’s appointments and seizure management – along with work, school and church activities. We did our best to keep up, to be the best parents we could be to all our sons. And, life went on.
Our marriage often took a back seat.
Although we did attend a few marriage conferences and took a few weekend getaways and short vacations, bitterness, anger and isolation was creeping in, unseen, ignored and left to grow. What I started realizing around 23 years of marriage, was that I had baggage that needed to be addressed. I had bitterness. I had attitudes that needed adjusting and a heart that needed to be changed. A lot of pain and subsequent consequences could’ve been avoided had I chosen to heed the early warning signs.
With this in mind, may I share with you some of the lessons God has been teaching me the past couple of years while in His loving refining room?
- Abiding in Christ: Growth, peace and contentment in my personal life and marriage begins and ends with abiding in Christ. “I am the vine, you are the branches; he who abides in Me and I in him, he bears much fruit, for apart from Me you can do nothing.” John 15:5. This means staying close to my Shepherd, getting to know Him, loving Him, trusting Him, obeying Him.
- Obedience: I am learning that my obedience and yielding to Christ, or lack there-of, affects not only my ability to know Him, to hear His voice, to see His work in my life and to be used by Him, but also affects my relationships, my marriage, my attitudes, my peace of mind and my heart. In the midst of all the demands and responsibilities that come along with being a mom of boys with special needs, I oftentimes put obeying God on the back burner. I neglected my time with Him. I didn’t guard my heart, my words, my thoughts, or my actions – especially in my marriage. I took my marriage and husband for granted, failing to realize the gradual erosion taking place.
- Address Issues Early: Looking back, I wish my husband and I would’ve worked through our baggage, couple issues, and differences in the early years of our marriage. Although, it would’ve been difficult finding childcare (as is often the case due to high medical needs and challenges), and expensive to see a counselor, we probably would’ve avoided pain and pitfalls down the road.
- Thankfulness: God is teaching me that a thankful heart and attitude keeps bitterness and a sour attitude from nesting in my heart. If I keep fixated on what my boys can’t do, what they are missing out on, and what my husband and I are missing out on, then, not only do I grow bitter, but, I can become depressed and lose hope. Finding reasons to thank God each day helps me keep an eternal perspective, see God’s blessings in our lives and helps keep me abiding in Him.
- Mentors:This can be a lonely and isolating life. I’ve learned that the Christian life isn’t meant to be either. We need Christian mentors in our lives; older, wiser women as well as older, more experienced couples. It’s hard to reach out and invest the time and energy necessary for close friendships amid all the on-going responsibilities that come with the special needs territory, but it is well worth it! Years ago, God brought an older, wiser woman of God into my life who has walked with me through many seasons, mountaintops and valleys, joys and sorrows. She offers encouragement, a listening ear, wisdom, truth and perspective. My husband and I are also in a couple’s small group Bible study. Getting there isn’t always easy or convenient and requires sacrifice on our part; but, we receive encouragement and accountability in our marriage, and the opportunity to encourage and minister to other couples.
- Reaching Out in Ministry: God is helping me to reach out and use my gifts to help others. This is a toughie as we SN (special needs) moms just don’t have a lot of extra time to devote to long-term, even short-term ministry. For many years, I was involved in music ministry. It worked well as it was flexible and allowed me the opportunities to use my gifts and talents for the kingdom. God has changed my direction somewhat the past few years, stretching me in undeveloped areas and giving me many smaller opportunities to serve others. I’m learning to look for these opportunities daily and though they are often small acts, others are encouraged and blessed, and so am I.
- God’s Word/Hope: God’s Word, His truths and promises, sustain me and help keep my eyes on Him. Meditating on and memorizing Scripture is not an easy discipline for me, but the verses I’ve learned are readily available when I need them the most. Lately, these two verses on hope have really encouraged me.
“[Now] we have this [hope] as a sure and steadfast anchor of the soul [it cannot slip and it cannot break down under whoever steps out upon it–a hope] that reaches farther and enters into [the very certainty of the Presence] within the veil.” Hebrews 6:19 AMPC
“Now may God, the inspiration and fountain of hope, fill you to overflowing with uncontainable joy and perfect peace as you trust in him. And may the power of the Holy Spirit continually surround your life with his super-abundance until you radiate with hope!” Romans 15:13 TPT
We praise You as Creator. You formed us and knit us together just the way You wanted. We are fearfully and wonderfully made! Forgive us for our impatience, selfishness and reluctance to trust You. We pray for strength and stamina through sleepless nights and long days. Give us friends who can encourage us and give us relief when our nerves are frayed. And, give us hope when everything seems dark. We look forward to the great reward of someday seeing our special children, specially perfect!
What struggles and trials have you gone through in your marriage, family, career, or life that has brought about a harvest of godly wisdom you feel led to share with us?
Or do you simply need some encouragement and prayer today to help you in the midst of your current trial? Let us know so we can pray with you.
Also, if you have a testimony you’d like to share for a post on any topic, I’d love to read it. I’m looking for women’s stories about things God has taught them and how God has changed and healed them through Christ. I prefer articles about 1000-1500 words in length. You may send them to me on my contact page. I’d love to have some guest posts to share especially for the month of April.
Thank you for this post! My son is 4.5 and has autism. It has definitely been the hardest thing I’ve ever faced. And my marriage has taken a backseat to everything that autism comes with. ❤️Trusting God for our future and praising him that my son is fearfully and wonderfully made
This would be extremely challenging. Praying for God’s wisdom, strength, encouragement, and resources for you for your parenting, your son, your marriage, and you and your husband in your own spiritual lives.
I’m so glad this post was a blessing.
I invite God to take this difficult trial and make it something beautiful and glorious for His Kingdom and for your benefit, your husband’s benefit, and your son’s benefit.
Hello all and thank you for this post. I have a daughter who is 16 and was diagosed with autism at the age of 4 1/2 years and it was tough. I thought out world had fallen apart and I focused on the negatives all the doctors and specialists said about my daughter, its not easy when it feels like they ripping your child to shreds and giving you no hope at all. i felt all they wanted was money money and more money we could not afford. it was really hard road to travel and know my daughter is at not far off finishing school it brings me into a new season of what is next for her?? and Know I have to fill out more forms to get help as she coming into adulthood and will need help when it comes to further study and finding work.
She has come along way, she still struggles with socializing but who doesnt have things they good at?? we all have our weaknesses.
I just want to encourage you Nicole, I have been there at the toddler stage and its hard when they can’t communicate what the problems are, but it will get better, they change and grow everyday and just keep praying for him everyday and focus on the things he is good at and run with it. My daughter always loved to draw and we have bought her heaps of books on how to draw and bought her books and paints and all sorts of art supplies cos its her passion. I always encourage her to keep praticing, and you know what she is so talented, everyone i shown her work too is blown away. What ever his love is focus on it and build on it it will be something he can look forward too. it might take time to find what it is but ask God to show you what it is. You are doing a great job. and your not alone.
thank you April for allowing others to share their stories on here. i hope and pray your family is well and God is giving you peace and strength as you too have been through alot in the last few months. you are in my thoughts and prays ladies.
Thank you so much for sharing. I really appreciate you sharing your experiences with Nicole and the other moms here. I love to see sisters in Christ encouraging one another and sharing what they have learned. It is beautiful!
Thank you for your prayers. We have had a pretty tough 8 months or so. Grief has been hitting us in new waves as we have been clearing out Greg’s parents’ house and are getting it ready to sell. But God is with us. He will strengthen us in all of this.
I don’t have a special needs child, but have arrived to a sudden shock and pause in my spiritual life. I’ve always been so very close to God and trusting in him but since falling pregnant and having a scary ultrasound reading, I became full of fear and overwhelmed and like God just abandoned me to feel all this fear.
And it led to questions like would I terminate? Would I.not give this child enough love if he wasn’t normal ? Would I become far from God? All I want is to feel peace and learn how to accept fate. I learned I’m very accepting of God’s will.. But weak if it’s not what I want, or can handle. Would love advice on how to deal with that
Congratulations on your walk wtih the Lord and on your pregnancy! How wonderful!
I’m so glad you read this article and that you are sharing your concerns and questions here and seeking godly wisdom.
Something I noticed immediately once I got pregnant with our first child, who is now 17, is that fear came roaring to life inside of me in a bigger way than every before. There are always things to worry about as a mom. You don’t have control over everything. You can control some things, but you can’t guarantee that you will get the outcome you want for your precious baby.
There are several things I would love to share with you as a mom of two children and as a pharmacist:
1. Ultrasounds are not always accurate. I have known many mamas who have been scared to death by reports from ultrasound findings. Sometimes they are true, but other times, there is nothing wrong with the baby. So – please don’t make any decision to abort the baby based on an ultrasound. I have known so many friends who received very troubling reports and were advised to abort their babies who ended up with healthy babies.
2. Even if your baby is not healthy, his/her life is still precious and you can still be a wonderful, loving mama. This is not the place any of us hope to be, but if we do end up with a baby who is handicapped, our lives are not over. God is able to do amazing, beautiful, powerful things even through a baby having medical problems.
Check out Nick Vujicic’s story. Don’t let anyone tell you that your baby’s life has no value. Or that if you have a sick or disabled child, that everything will be horrible. God uses this man, who has no limbs, to reach hundreds of thousands of people around the world for Christ. He uses him because of his disability. People listen to him because he has been through what he has been through. His experiences and suffering give his words so much more weight. There are longer videos where you can see much more of his story and testimony about how he wanted to die when he was 8 years old and how God transformed his mind and heart when he was older. Now, he is married and a father! His life is extremely rich and full and he has more joy than most able-bodied people.
If you know Jesus as your Savior and Lord, He is an Expert at turning the most awful things into the most beautiful things. I know the enemy wants you to be afraid. But God has an exciting adventure in store. Change your questions. Ask things like:
– God, what do You want me to learn through this?
– God, will You please show me how to love this precious baby just like You do, even if he/she has medical problems?
– God, would You please use this trial to bring great glory to Yourself and to help conform me to the image of Christ?
– Lord, will You show me the way You want me to be a blessing to others through this trial?
– Lord, I know I can’t do this on my own, would You please empower me to be the mom You call me to be?
I also invite you to search my blog for:
– 8 powerful keys to peace
– The Cure for My Compulsion to Control
– Submit to His Lordship
Fear is not from God. For God does not give us a spirit of fear but a Spirit of power, love, and a sound mind. 2 Tim. 1:7
You will experience God’s peace as you allow the Prince of Peace to sit on the throne of your life and allow Him to have control and you trust Him more and more.
Also, I believe my book, “The Peaceful Mom” would be super helpful in dealing with these fears and learning baby steps to trusting God even in this trial.
I am praying with you and already praising and thanking God for the incredible spirtiual treasures He has waiting for you in this time. I pray you will throw fear aside and dive in deeper than ever and choose faith in Jesus and invite Him to turn your story and your baby’s story into something glorious for His Name!
I would also encourage you to allow yourself the grace to have emotions and to grieve if you need to. And find a supportive group of women, or one woman to be a prayer partner and mentor. There may even be a support group of moms for the condition your baby may have that would be a huge blessing to you.
One of my friends has a daughter with Down’s Syndrome. It is not what she wanted. It was not their plan. But that little girl has brought SO MUCH JOY and LOVE and LAUGHTER to their lives. She has been the biggest blessing.
As long as Jesus is with you and you stand on His promises, you will have His strength to stand. We don’t have the strength in ourselves. But in Jesus, and through Him, we can do anything!
I have been reading this over again, and other posts on your blog, and its given me better perspective, but I still suffered so much anxiety until I cried to God about it. I had a life changing dream 2 nights ago that’s completely changed my mindset and I knew I needed to share it with you.
The world suddenly became dark, in my dream, and I became so frantic and terrified. My father however, was absolutely calm. He just said when you’re with God there’s nothing to fear. I thought, that’s so illogical, ofcourse we need to be afraid of this darkness! I then found a flashlight, but it didn’t give me the comfort I needed. Perhaps only temporary. My father was still calm. Eventually the world was back to normal, and I asked my father, why did God have to do that?? He simply told me sometimes he tests us because he loves us. Again I was bewildered. Testing us because he loves us? I asked my father, why weren’t you at all scared? He said when you’re already close to God, whatever comes is not scary at all.
I woke up at first thinking God is cruel, after thinking about it I realized God was teaching me something. Without God, we are truly living in darkness and our best attempts to “see” is like using a dim flashlight in a cold black world. But when we are with God we are safe in his infinite “light”. His light is his power, his knowledge, he has a much greater scope of the universe and beyond than we do, so we must never depend on our own understanding, just as the Bible mentions. When we truly lean on God we know we are in safe hands. Even if we can’t the good in something, we know HE can. I learned it’s important and crucial to lean on God and that our faith will be tested.
I learned my problem wasn’t in fearing a disabled child.. The root of the problem was having so much fear and worry in my heart when I should instead think good of God and trust him no matter what happens. And that in a blink of an eye something can happen,, which is why we need to always be close to him.
Ofcourse every now and then I worry, but I know God knows what’s best for us. There’s been so many times in life I prayed for God’s will and didn’t like it at first yet later understood and loved his will. So I will always pray for his will instead of mine.
Thank you so much April for your blog. It’s been so close to my heart for about 4 years now 🙂
Wow! Thank you very much for sharing about your dream and the way God is working in your heart. How I praise God that you turned to Him and that He helped you change your thinking. I love that – when you are already close to God, whatever comes is not scary at all. YES!
I am also THRILLED that you see the root of your fear now.
Can’t wait to see all that the Lord has in store for you, my precious sister! Praying for you and your precious baby.
Much love and the biggest hug!
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