Because I Have a Child With Special Needs, I am a Mama With Special Needs
During 2008, my otherwise healthy 4-year-old daughter developed epilepsy. At the time, we had four children, and were expecting our fifth. Life was chaotic, but mostly manageable, before seizures invaded. When Aggie became sick, I found myself completely flattened by the needs around me. I went from the need-meeter, to the one who needed- grace, support, and help of all kinds. I like to be the need-meeter; not the one that NEEDS!
As it turns out, it is ok to need things. Yes, even as a mother; perhaps, especially as a mother. Today, I’ll tell you what I needed then, as a mom of a daughter with special needs.
My daughter is healthy now, and it turns out I still need most of these things.
Because I have a child with special needs, I am a mama with special needs.
I need to brace for my day.
I need to mentally prepare for each day- all that much more when my day includes grief. I need to carry the heavy thing that is on my heart to God, right away, and hear him remind me that it will not always be this way. I need to spend time in the Word, to pray for my daily bread, to trust God to provide the energy, strength, patience, joy, and love I need to do this job as mommy.
I need to talk to people who know exactly what I am going through.
I need to spend time in online forums to learn from those who have been in this place before. I need to research, even though it scares me to death, because my knowledge helps me to be a better advocate for my baby. I need to hear a few success stories. I need to know that other mothers have made it through this.
I need to talk with people who know nothing about what I am going through.
Strange, isn’t it? Yet, I do so appreciate spending time with people who do not know me as “the mother of the girl with seizures.” Yes, the problem might be the loudest thing on my mind, and it might be a little annoying to hear you complain about little things like teething and ear infections, but I also like to have a taste of normal. I like to hear the funny stories about your kids. I like that you make me talk about something other than our own consuming trial for a few minutes.
I need your patience when I am overwhelmed.
I need bucket loads of patience from my friends and family for forgetting conversations, birthdays, and constantly being distracted when talking to you. I often need to let your call go to voicemail. I need to simplify, and to focus on the needs inside my own house. I need your forgiveness if I have become a bad daughter, mother, wife, or friend. When you see these things happening, please, pray for me, and consider how you might help if you can.
I need to take care of my body.
Why do I remember to give my kids their antibiotics, anti-seizure meds, vegetables, and chap stick, and I can’t even remember to eat breakfast myself?
I need to drink my water and take my vitamins. I might need to sweat out some of my anxiety.
I need to get enough sleep. When it is possible, I need to listen to my body: go to bed early, or nap if I am tired. Yes, sleep when the baby sleeps; or when the big kids sleep; or when anybody else gives me a chance.
I need perspective.
I need people who spend a lot of time with my child to talk things out with me, to soundboard, to help me observe and discern and develop strategies. This constant job of mine is so overwhelming, and I feel so far out of my league here! Another knowledgeable person who is willing to help me wrestle through these things is a tremendous blessing.
I need to keep my eyes open.
Research, advocacy, anxiety, discipline, reading, cleaning, cooking, laundry: these things were ALL part of my mommy-job each day. Yet, stepping away from that never-ending list was so important. I need to take some time to just BE with the children, really looking at their little faces, remembering what makes them unique and beautiful. I need to see friends, grandparents, and daddy delighting in them for the amazing creations that they are, because it reminds me to do that, too.
I need to keep my hands open to receive drops of joy.
There was a constant aching in my heart for my daughter, as I grieved for those “normal” things she could no longer do. As I became her advocate and protector, it was easy for those heavy burdens to cloud my eyes, making me see nothing around me but work and worry and sickness. Yet even in the darkest days, God often opened my eyes, and helped me to see droplets of grace. I was so thirsty for them. They helped me to remember that life was not all sickness, and that God was indeed, good. I began looking for His small encouragements all the time. I found grace-drops in various places: snuggling my newborn, power-dancing with my daughters, a moment of evening quiet in the country.
I need to put myself on my list.
Seriously. If this does not happen, mama falls apart, and so does the entire world. I need to find time to rest my body and soul.
I need to figure out how I cope.
I needed to find my own way of dealing with the emotional toll of my daughter’s condition. I cope best with a Bible and a keyboard. I need time to write, to think, to pray and cry.
I need help.
I ask God for help all the time, and yet I find it so difficult to ask people! I need to remember that God often provides for me through others: my husband, neighbors, grandparents, friends, and church family.
I need the grace of God.
Every minute of every hour of every day. I need His wisdom, His strength, His love to fill my heart. I need His healing when I ache. I need His forgiveness when I blow it. I need His constant reminders that He is bigger than all of these things that are so much bigger than me. I need Him to love and care for my children, sick and healthy, and I need Him to finish the good work he has started in them and in me.
I need Jesus.
We need, fellow mothers.
It is ok to say that out loud.
Praise be to God, who cares for the needy!
Please, add to my list! What else do you need?
Emily Cook is a mother, a sinner, a child, covered in the blood of Christ, and freed from the burden of pretending she is strong. She is a woman growing backward, a mother-child, messy with sin, but rejoicing in the constant love of her Heavenly Father. She lives with her husband and their six children, including now-healthy Aggie, in the arms of the church where her husband is the pastor.
She is also the author of Weak and Loved: A Mother-Daughter Love Story
Like Dakotapam, she writes to keep her sanity. Read more by Emily Cook at http://www.weakandloved.com/