For the mom (and her friends) with a child who fails to thrive

I am so excited to restart the Mentor Mom series on Mondays (late today due to technical difficulties and a long weekend of traveling). I love reading the wisdom and hearts of other moms. I love encouraging each other. Take a deep breath, slow down, and read the touching words of Amber who returns for another potent sharing of her heart as a mom. Send this post to moms who need it, because many do. Remember to leave Amber some encouragement and please pray for her and her family.

Terrified. Complete darkness. Lost in my own room. As a child I woke up one night lost in darkness. I had walked in my sleep and awoke to a pitch black room. I grew up on a farm in Kansas. No street lamps. No porch lights. On cloudy nights not even the moon and stars could dent the darkness of my basement bedroom. 

On this particular night I had sleep walked around the room and ended up on top of my desk. I huddled on the desk’s ledge, not knowing where I was, scared to death, and desperate for light.

Twenty years later the feelings of desperation and panic aren’t as faint as I wish they were. It’s no longer a dark room that scares me. (The darker the room, the better I sleep these days!) Now my fear grows from the black hole of unanswered questions. Questions that have hung like a curtain for two years, rustling around me as our family has inched our way backstage into the world of special needs. 

This special needs world became our backdrop in September 2009. I didn’t know it at the time. All I knew on my youngest child’s birth day was that I was in love. My baby was sweetness defined! His two older siblings adored him. My husband proudly snuggled him. The grandparents found him adorable. And the doctors declared him perfectly healthy.

Chase came home with us to expectations of sleepless nights, endless feedings, diapers and lots of irresistible cuteness. I was after all a mom now to three– practically a professional in the mommy career. I knew what to expect.

What I didn’t expect was the first medical test at two months old. I didn’t expect the doctor’s concerns over Chase’s “failure to thrive.” I didn’t expect the MRI, the CT scan, the ultrasounds, the blood work. I didn’t expect Chase’s grandma, who always beamed over his accomplishments and sweetness, to point out his floppy body and lack of interest in toys.

Tests continued. Physical therapy started, along with occupational and speech therapy. Scared, but trying to ignore it, I gladly accepted the extra help. Chase just needed a little assistance to reach those initial developmental milestones. He would of course catch up to “normal.” Plenty of friends affirmed this thought, telling me stories of kids who had started out slow and were now just fine. 

But then the doctors started talking about finding a diagnosis. Doing genetic testing. And the darkness that had inched its way into my life crashed down on the boundaries I had set up to contain it. I could not keep it out.

This unfamiliar world scared me. I spent hours googling genetic syndromes. I searched for answers just as desperately as I had searched for the light switch in my basement bedroom. I wanted to identify the problem. I wanted to know what to expect. I felt sure a diagnosis would banish the darkness.

Chase will be three this month. We still don’t have a diagnosis. We still love him just as fiercely as the day we first held him. And I still feel a bit lost sometimes, not sure of where I am and where I fit within this new world of special needs.

Chase’s needs seem fairly mild when put on the special needs spectrum. He can finally walk, so the special walkers and ankle braces are gone. He doesn’t need a feeding tube. He looks like a pretty typical toddler. Without a diagnosis I have no specific support groups or websites to which to turn, even though I long to fit somewhere, to talk with moms who have seen this darkness.

Some days the darkness fades. Other days I panic because I can’t see answers. I don’t know if he’ll talk. I don’t know his cognitive abilities. I don’t know how long past normal diapers will remain in our house. I don’t know if I can ever expect normal sleep patterns.

On those days when the darkness is inky black, I have to choose to turn from the questions and focus on what I do know, on what I definitely can expect.

I know that Chase will always melt my heart. Even on the frustrating days when I cannot decipher his angry cries or day-long whimpers, I will never lose my love for him. And I know that the belly laughs and flirty smiles cannot stay away forever.

I know that my friends will always care about me and my child. They may not always say what I wish they would say or completely understand my feelings because half the time my emotions baffle me. But I know my friends will always care. If you are a friend to a mom with a special needs child, listen to her. Pray for her. Love on her child. Don’t minimize her concerns even if you’ve heard them before. Look for resources that could help her. You may not understand all that she is going through, but there are people and organizations out there that do. Help her find them.

I know that I will find help and resources from other moms in the special needs community. While I may not feel sure of how I fit in this world, I have found acceptance, resources and encouragement in this community. If you are a mom within the special needs community, be on the lookout for those of us who enter through the backdoor. We don’t have a diagnosis. We don’t know if our children have gene mutations or long-term disabilities. But we are desperate for answers, desperate for a light switch… or a flashlight. You can help!

I know that the One who sees light in the darkness is also the One who created my son. And I can trust him. 

"If I say,'Surely the darkness will hide me

and the light become become darkness around me

even the darkness will not be dark to you;

the night will shine like the day, 

for darkness is as light to you.

For you created my inmost being;

you knit me together in my mother's womb.

I praise you because I am fearfully and wonderfully made."

Psalm 139:11-14

Amber is a mom to three, including one princess, a photographer and a writer. She shares her heart for Jesus and for mothering on her blog Here...and the hope of glory. Previous posts on Pruning Princesses include Girls and Boys, When You Feel Like the Wrong Mom for Your Kid, and What a Youth Group Leader Wants Parents to Know.