That Question. Again…

That Question. Again…

PipSqueak and I were sitting in the front row at church, because we like to watch the Sign Language interpreter and learn ASL. A young lady (probably early 20s), was sitting behind us and said to me, “your daughter is so cute.”

Thank you!

The lady continued, asking, “what is her name?” …and… “oh, that’s so beautiful.”

I was having a lovely moment, appreciating the friendly reminder that most people think my daughter is adorable…

Because recently, I overheard the little boy say to his older sister, “that girl looks scary.” The children were maybe 4-8 years old. Their mom was right next to them, but busy on her phone. The boy said it a couple times, as his sister tried to hush him. I looked around to see who he was talking about. Then I realized he was looking at my daughter.

Realizing this is a good teaching moment, I might as well take advantage of it. Although I’m not sure what to say to some random child, but his own parent was completely absorbed typing on her phone. Probably better that way. I would have felt bad if the mom was embarrassed and forced her son to apologize and turned it into a big awkward ordeal.

So I asked him, “this girl?” Pointing to my daughter. 

The boy looked at me nervously, “yeah. She’s scary.” His big sister tried to hush him again.

I took a deep breath, and launched in, “she does not have cheek bones,” I explained, tapping my own cheeks, “so her face looks a bit different.” The boy shrugged and turned away, giving into his sister’s pleas and ducking behind his mom, ending our awkward conversation.

I’m not concerned about the opinion of one scared little boy,

because I know my daughter is super cute, and I believe that the majority of people agree with me. So it was lovely to have my opinion confirmed by this random lady at church today.

…But then she ruined my blissful moment with her next question,

“can I pray for her?”

Yep. That question. Again. We are at church after all, where “can I pray for you?” Is a common question. I do appreciate prayer, especially when my daughter was a baby and life was hard. But now she’s a perfectly happy, healthy little girl. So I was surprised, thinking, “why are you asking to pray for her?”

A million thoughts swirled through my head: What are you planning on asking God to do? For her to grow cheek bones? Or be able to hear? Do you even know those things on her headband are hearing aids? And she can hear great with them. Her Dad has TCS and hearing aids too, and he turned out just fine. He’s also been prayed for a billion times, but still hasn’t grown ears.

PipSqueak has a big personal-space bubble, so someone asking, “can I put my hand on your shoulder?” is met with a glare. Maybe she’s mimicking my startled response to the question… a question for which, I still have not figured out a good response…

How many bajillion people are going to feel drawn to pray for my child just because she looks a bit different?

Is my daughter going to feel loved and encouraged by all the prayers?

Or will she become annoyed by the attention, or disillusioned in her faith because she still hasn’t grown cheek bones?

Or will she start asking, “why doesn’t everyone just love me the way that I am? Why do they think I need cheek bones? Am I not good enough?”

My questions are rooted in my own childhood…

*read the following section with a hint a teenage sarcasm*

Growing up, my sister Hannah, was in a wheelchair. Our family lived on a Bible College campus, where my parents were on staff, so praying for Hannah was the trendy thing to do. We spent our entire childhood, hearing over and over, “can I pray for you?” And it just gets old. 

Don’t get me wrong, I appreciate prayer. I believe in the power of prayer. I have seen miracles. But as teenager, the whole, “lets pray for her again!” It gets annoying. 

One night at youth group, when Hannah was about 16 years old, a friend said, “lets pray for Hannah!” And I was thinking, “wow, so original” (I warned you about the sarcasm) “Here we go again.”

All the other teens gathered around, praying heart-felt prayers. I prayed silently. I am pretty sure I have never told to anyone the incredibly faith-filled words I prayed that evening, something to the effect of, “God I am done. This is the last time I’m praying for her. You said in the Bible, that we could lay hands on people and see them be healed. So if you’re ever going to heal her, now would be a good time to do it. Cuz I am done.”  

Thinking back on that day, I wonder…

If things had gone differently that evening, where would I be today? What would I believe? Who would I have become? I don’t even know. I have never actually thought about that. This is possibly the first time that I am fully aware of what a defining moment that event was for me. 

That night at youth group, Hannah got out of her wheel chair and walked. 

I don’t remember anything about the rest of the evening. But when it came time to go home, everyone stayed, waited and watched as my mom arrived to pick us up. Mom opened the door, watching in shock as Hannah walked across the room to her. 

It was a powerful moment for everyone.

But I felt like a spectator, watching the events unfold around me. I didn’t “feel” much of anything…maybe I was still in a bit of shock… Been there, done that, and I was not expecting today to be any different than the other million times we had prayed for Hannah.

In hindsight, I do believe that was a defining moment. 

I cannot even fathom how different my life would be if God had NOT healed my sister that day, sending me on a journey down a good path… 

10+ years later, I fell in love with and married Duane, even though he is “different” and a 50% chance our child would have “special needs.” But I was ok with that, thinking, “been there, done that. It’s no big deal.” Although that response changed, when our 2nd daughter actually was diagnosed with TCS. That hurt. Looking at my first-born daughter, thinking, “I’m sorry honey, this is not the childhood I would have chosen for you.” I was ok with the idea of being the mom to a child who had TCS, but it had not occurred to me that child might have a sibling, who did not have a choice in the matter.

Fortunately Big Sis enjoys all the cool toys they have in hospital waiting rooms, and says all the time, “my sister is so cute! I just love her!” Although she is jealous of Little Sister’s super cool hearing aids.

Fast-forward to now…

My little daughter’s 4th birthday, coinciding with the weekend when the local Bible College is back in session, and the students are eager to see God move. So a random lady at church asks, “can I pray for her?”

Here we go again… and I know this will NOT be the last time we hear that question. But I just don’t know how to respond…

Edited to add…

I suppose the question, “may I pray for her?” might be a roundabout way of asking for an explanation of TCS / hearing loss. As well as an opportunity to share specific prayer requests. My thought is to respond in such a way as to imply, “she’s a normal kid, and needs the same things any other child would.” Some sort of response which helps people realize we do not have any major concerns, so please do not feel “burdened” to “travail” in prayer for her.

Some Mama’s shared these great ideas:

I received these responses from parents whose children have craniofacial differences and / or hearing loss:

“Maybe come up with specific things your family wants prayers for? I was thinking stuff like acceptance from others, being God’s light in the world, making new friends, help making some sort of goal she has set, or even if she is getting over a cold.” – Jenn Snow 

“Often people don’t know how to help, so they offer prayers. We appreciate these gestures because it means there is one more person praying for our son. We don’t pray for healing. We pray that he will love himself and know that he is loved, that he will make friends easily, and that we make the best decisions for him. We have seen miracle after miracle in his little life, so we’re thankful for the prayers, even from strangers.” – Tara Glandon 

“Pray that he loves himself and feels the love we have for him, and that God has for him. Pray that people will be kind. Pray that the school system does not limit him. Pray that his surgeries go well, when he has them. And pray for me. Pray that I have an outlet for stress that’s healthy. Pray that I show him how to love the Lord with all his heart. Pray that I win the lotto so that staying home with him isn’t so hard. (Joking.. not joking) pray that I can appreciate the time I have at home with my boys. Pray for his brother. That he is strong, protective, independent, and loving. He’s already those things, but more can’t hurt. Pray for my husband. He supports us all on his own now. That’s no easy thing these days. Pray that he doesn’t lose it on the next person to ask what’s wrong with our son. Pray for faith and strength. Please don’t bother praying for him to get better. He is well and thriving. He is exactly how the Lord intended him to be and look. He is not sickly. He runs, plays, throws toys at his brother, and speaks 2 languages. (Sign language and English) he also understands everything you say. So don’t act like something is wrong with him. He’s wonderful.” – Jennifer Spiegelberg

Thanks to those ideas, my prayer request would be:

For my daughter, please pray: that people will be kind. That they will see the beauty in her, and love her for who she is. That she will know she is loved and know she is beautiful. Pray that she would make friend easily have true friendship, not out of pity or obligation. Pray that she would continue to be a brave, bold little girl and to conquer any challenges which come up, and that she would inspire others to never give up. Pray that her life and our family would be a light and encouragement to other families.



My hope is to in inspire and encourage you on your journey to raise healthy, thriving families in spite of the challenges life may bring...Sharing our adventure of navigating parenting and homeschool with the added challenges of TCS  -- A hard of hearing husband & daughter -- Surgeries -- Speech Therapy --  Learning Sign Language --

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