Being a mom has opened my eyes to many things. There are feelings, reactions, and dreams that cannot be understood until you are holding your own child in your arms. Your desires for them, your prayers for their future, your investment into their lives, your fierce and protective love – no one can prepare you for it. Perhaps that is why I am just beginning to understand some of the things that have defined my mom’s life. Because her child – my younger sister – has required more love, more protecting, more defending, and more encouragement than I ever realized.
She’s been a mom for 37 years, and she’s been fighting for her intellectually and medically challenged youngest daughter for 32 years. Her wisdom was forged in the trenches of battle. Her faith refined in the hardest places of life. My mom is a warrior mom. And this is her story in her words.
My name is Cheri Howell. I am wife to my beloved husband, Tom, of nearly 40 years; mother to three beautiful daughters and two wonderful sons-in-law; and grandmother (Mimi) to six amazing grandchildren. We have lived most of our lives in ministry, beginning as Co-Program Directors at a christian camp & retreat center for four years and finishing our career with my husband serving as a pastor for 30 years.
What is your child’s health condition and how old was your child when they were diagnosed?
Our youngest daughter, Alisha, who is now 32 years old, was born with Congenital Heart Disease and required open heart surgery when only five days old. During the surgery the doctors observed the absence of her thymus gland. This led to a diagnosis of DiGeorge Syndrome (22q Deletion Syndrome). It has been a long journey and, since 22q Deletion Syndrome is so rare, there is still much to learn.
What are the challenges you face as a parent of a child with complications?
It’s difficult to stand on the sidelines and watch as your child is excluded from enjoying life with the people around her. Alisha has mental delays and doesn’t relate to the world the same as others her age. Growing up, she didn’t often receive invitations to everyday activities that others readily participated in. It crushed her and us. Many times my husband and I would drive away from group activities with Alisha in the back seat wondering why she is never asked to stay and be involved like others her age. “Don’t they know I would have said yes?,” she’d ask. “Don’t they know it hurts my feelings to be left out?” She understands enough to know that they think she doesn’t quite belong. It angers me that she is made to feel like she’s less important or wanted, not to mention living with the reality of a syndrome that few have ever heard of or taken the time to understand.
How does having a child with complications affect the dynamics of your family?
I believe our family is blessed beyond most. God has always brought us close together as we share in life’s experiences. We are aware of each other’s strengths and weaknesses and we do our best to care as much for one as we do another. At times it may look different just because of circumstances, but everyone pulls together and prays together wanting only God’s very best for all. It makes me realize how each of us are uniquely made and in need of the others.
What has helped you on your individual faith journey as fear and worry threaten to overcome you?
For me as a mom, I so desire for each of my children to be all that they can be for the Lord. My every prayer is for them to walk with Him, step by step, day by day. I once wrote a song titled, “In His Love Abide.” After Alisha was born and I was discharged from the hospital, we left her bedside wondering if she even knew that she had a mom, dad, and two older sisters who already loved her. That night, after I retrieved the one picture we had of Alisha and brought it into our room, we prayed for God’s amazing arms to enfold her like only He could, and lavish His love upon her so that she wouldn’t feel all alone.
I often go back to that night whenever Alisha is experiencing another hard reality, asking the Lord again to enfold her and lavish His love upon her. It’s then that I find renewed strength and peace. My faith continues to grow every day, and step by step in the One and Only who created all things, knows all things, and has provided all things; including my salvation because of His son’s life, death, and resurrection. Jesus, name above all names.
What has God taught you (or is teaching you) through your child?
Faith. Pure and simple faith. It doesn’t need to be complicated. Be thankful for the little things. Trust Him in all things big and small. In Christ, indeed, all things are possible. My life verse is Philippians 4:13, which says, “I can do all things through Christ who strengthens me.” Jesus continues to be my solid rock, my firm foundation.
What words of advice or encouragement do you have for mothers who are in the same stage of life as you?
I will forever be an advocate for Alisha as her health gets more and more complicated. Creating a timeline that shows all of the illnesses, surgeries, and health challenges she’s had over the years has been helpful. I often reference it when talking to a new doctor to help them understand how complex Alisha’s healthcare truly is. I recommend that each mom does this, and start when their own warrior is young. Keeping your own records in one place eases the struggle a little bit.
At times, I feel very weary, wanting to do the best I can for her but not always knowing how. It’s in these times that I am especially thankful for the family and friends who hold us all up in prayer. It is through their love and kindnesses that God continues to reveal His nearness and strength. It is in prayer and leaning upon His Word that I am refreshed for each new day.
“The LORD is my shepherd; I shall not want. He makes me to lie down in green pastures; He leads me beside the still waters. He restores my soul;” Psalm 23:1-3a