Today I write this for another Mom I know, another Mom who carries the weight on her shoulders, the burden of raising a child with special needs, with serious health issues. For another Mom who has felt lost and broken, weary and hurt with dealing with the life that has been given to her. Today I write this for every mother who has ever felt like I have. We, our children, are all fighting different battles. It doesn’t matter which child is healthier or more high functioning. All that matters is that our children have struggled, they have fought. And we have stood by them, with our hearts physically aching, tears streaming, feeling every ounce of their pain, feeling alone in the world.
But we are never alone. Not only can we find solace in the fact that every second of every day there is another mother fighting for their child, for their illness or disability, we can take comfort in the fact that we are not walking through this journey alone – for God is with us every step of the way. He is our strength when we are weak.
Since our daughter was born, I cannot count the number of times that I have been commended on my strength, told by others, “I have no idea how you do it,” as though I possess a strength that others do not. But the truth is – I’m not strong. I am very, very weak. Going through what we have with our children have proven that to me.
The day before my daughter’s scheduled open heart surgery I was a physical and emotional wreck. As we prepared to leave for her pre-op day, I was physically sick in the bathroom. I was shaking and crying, “I can’t do this, God, I can’t.” How does a mother ever have the strength to hand their tiny child over for a surgery that could kill them? Or leave them with serious, life-long complications?
Since our daughter’s diagnosis with autism, how many times have I felt broken? How many times have I felt like giving up? Like running away and letting someone else deal with the screaming? The destructive behaviors? The constantness? For at the worst of our daughter’s behaviors, that’s how my life felt – like one constant mess and battle after another. I would no sooner get one mess cleaned up, then she would be destroying something else. I would no soon get her (and myself) calmed down from one melt down and she’d be having another.
I have never felt more longing and more jealousy. How often did I feel jealous of those around me with healthy children, with children without disabilities? Who didn’t have a list of phone numbers on their fridge that included almost a dozen different medical professionals and therapists? How often did I look at my daughter longing to hold her, to cuddle her like other parents do? How often I longed for that closeness.
I have never felt so tired, or so old. There have been days when I have felt weary of life, tired from the mental strain and worry. Tired of the constant appointments, of one issue after another popping up, and having to fight a system to get help for my daughter who despite her many health “quirks”, is healthy enough and “high-functioning” enough that she falls through the cracks. Tired of wondering what’s normal and what’s not.
I have never felt so lost or so burdened. My son’s diagnosis of Sensory Processing Disorder is not a familiar diagnosis in our small town, and there are very few resources available for help. There are few people that can relate to what we go through. I have felt the weight of the pressure on me like a physical force – the pressure of knowing that I am responsible for fighting to get him the help that would be readily available in other areas. I have felt lost wondering where to turn, what to do next, how to handle the behaviors at hand, what I could do to teach him the coping skills he needed, to be able to function like a “normal” child.
I have never felt more criticized and hurt – hurt by the lack of support I thought I would receive from some of the people closest to me. Who instead of reaching out to me, condemned, judged, questioned and accused me. Who criticized the decisions we were making, or the way we were handling our emotions, on a journey that they were not walking.
I have never felt more alone. I have never felt more weak.
But that’s the common misconception that special needs parents often face – that they are a special species of mothers with super human strength, capable of doing what others deem impossible. When the truth is – we are just ordinary, regular mothers, who have been given situations that were certainly not of our choosing, and we have no clue what we’re doing. We are not stronger than any other mother, in fact, on our own, we do not even come close to being strong enough to get through these challenges on our own.
Instead, the truth of our strength can be found in the Bible, Psalm 121:1-2: “I lift my eyes unto the hills; where does my help come from? My help comes from the Lord, the maker of heaven and earth.” We alone, are not strong enough. It is only through God’s strength and mercy that we are able to face the challenges that we are presented with.
I was raised as a Christian. I sang in the choir from the time I was 8 years old. I attended church faithfully for most of my life. But I have learned more about faith and trust in the Lord in the last 5 years, than I have in the rest of my life. I have been brought to my knees in my life many times, and it is always when I am there, feeling broken, that I feel God’s presence the most.
It is when we have all but given up, when we cry out that we can’t do this any more, that we don’t want to do this anymore, that we’re tired, that we’re scared, angry, frustrated, afraid, worried, confused, discouraged and so on… It is then that God reaches down His hand, and pulls us back up. It is then that God reminds us that we don’t bear the burden alone, that we are not solely responsible.
And we aren’t. So often, we get caught up in our role as “special needs Mom”, and all that comes with it – the pressure, the to-do lists, that we forget that God is right there beside us every step of the way. And while yes, there is a role for us to play, there are responsibilities that we must take – ultimately, our children’s lives, their progress, their healing, is in God’s hands, not ours. What a huge relief and comfort to know that God is with us, always. To know that when we fail to be strong enough, God will be there. God will never, I repeat, never fail us. It’s a promise that gives me, that can give all of us, the strength to get through every challenge.
For some of my favorite scriptures, songs and poems that I have turned to over the years, please read on:
“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13
“He will have no fear of bad news; his heart is steadfast, trusting in the Lord.” Psalm 112:7
“Have you never heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth. He never grows weak, nor weary. No one can measure the depths of his understanding. He gives power to the weak, and strength to the powerless. Even youths will become weak and tired, and young men will fall in exhaustion. But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” Isaiah 40:28-31
“For the joy of the Lord is your strength.” Nehemiah 8:10
“Now faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1
“When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fires of oppression, you will not be burned up; the flames will not consume you.” Isaiah 43:2
“The power that made the body, can heal the body.” Psalm 139:14-16
“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though it’s waters roar and foam and the mountains quake with their surging.” Psalm 46:1-3
“We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus, so that the life of Jesus may also be seen in our bodies.” 2 Corinthians 4:8-10
“Dear Brothers and Sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing.” James 1:2-4
“Here on earth you will have many trials and sorrows but take heart, because I have overcome the world.” John 16:33
“Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.” James 1:12
“If God brought you to it, He will bring you through it.”
“Challenges are what make life interesting; overcoming them is what makes life worthwhile.”
“He giveth more grace when the burdens grow greater, He sendeth more strength when the labors increase; To added affliction He addeth his mercy, To multiplied trails, His multiplied peace.
His love has no limit, His grace has no measure; His power no boundary known unto men; For out of His infinite riches in Jesus, He giveth and giveth and giveth again.
When we have exhausted our store of endurance, When our strength has failed ‘ere the day is half done, When we reach the end of our hoarded resources, Our Father’s full giving is only begun.”
“We are not promised skies always blue, instead a Helper to see us through.”
“Joy is not the absence of suffering. It is the presence of God.”
There Will Be a Day – Jeremy Camp
Walk by Faith – Jeremy Camp
Strong Enough – Matthew West
Praise You in this Storm – Casting Crowns
Great Are You Lord – All Sons and Daughters
In My Daughter’s Eyes – Martina McBride
You Raise Me Up – Josh Groban
Let It Be – The Beatles
You Were Meant to Be – Steven Curtis Chapman
If You Want Me To – Ginny Owens
What Faith Can Do – Kutless
The Healing Hand of God – Jeremy Camp
Tiny Light – Cory Woodward