Lesson #5: A Boy and His Thumb

Once upon a time there was a baby boy of squishy leg rolls and chubby cheeks. His mother gave him a pacifier when he cried, to soothe him to sleep. He loved his pacifier and began to call it his "yum-yum." This mother liked the yum-yum because it calmed him down when he was frustrated, which was often. And she liked that it was something they could eventually wean him of. They were a family rich in yum-yums, hidden in many places around the house and used for bedtime, car rides, movies, and late afternoon grumpies.


Then one day, this baby boy grew up into a preschooler. And his mom decided that it was a good time to say good-bye to the yum-yum. He missed it, but learned to sleep without it. They coped with disappointments and frustrations without it's help. But he wasn't ready to give up the soothing feeling of something in his mouth. They tried gum and a chewy tube, but they weren't the same at all. At long last he found the perfect thing for his mouth - his thumb. His mom didn't think it was perfect at all. How would she ever help him stop?


As I wrote this little tale, I realized again how much of it is about ME rather than CARVER. Interesting. I am a control-freak of various degrees and naturally like the security of pacifiers, that I get to choose when it's used and where it hides, when it's time to outgrow it. I'd asked some of Carver's OTs and SLPs and gotten recommendations to take away the yum-yum, but ultimately it was my choice. And he wasn't ready at all. He may have learned to sleep without it, but he wasn't ready to LIVE his life without it. I resisted that thumb, but in the end realized that it was my own fault for taking the yum-yum away too soon.

Then I made an even greater realization: Carver needs his thumb and that's OKAY. It's not my issue, it's his. I've even learned that it's a wonderful thing that Carver gets to choose when and when not to suck on his thumb. I see patterns - when he watches movies or listens to books, when he rides in the car or sits at church, when I tickle him, when I snapped at him this morning from the shower because he was playing in my jewelry box after I JUST told him not do. He sleeps with the yum-yum because it is still his favorite, but he doesn't get it any other time and he doesn't mind at all. He is learning to self soothe and that's an important skill for anyone. He won't suck his thumb his whole life - at least not in public, right? :)

So the lesson of the day is to accept your kids as they are. I never wanted a thumb-sucking child. EVER. But Carver needs his thumb and I take him as he is. We don't get to choose what our children like and don't like. We don't get to choose their personalities or sense of humor. I am learning to let go of my control issues, to honor my children's individuality and even let my 8 year old part her own hair.

Lesson #4: Mother knows best

Next week Carver will see a pediatric gastroenterologist at Children's Hospital to get to the bottom of his regurgitation. He's been "spitting up" continually since he was an infant. It was curdly milk for a while, lately it's been more acidic. I'll spare you too many details, but his chin is raw from the drool and occasionally has just terrible breath. He has also been addicted to milk/cheese/yogurt his whole life - which I think is his way to soothe his stomach. Doctors have REPEATEDLY blown me off - many different doctors. Last time she assured me that reflux would hurt, that the main symptom is stomach upset. Well, Carver's not going to be able to communicate that to me even if he realized that his stomach hurt - and I'm not sure he'd know. So I finally decided that as his mother, it's time to refer myself to a specialist. Of course, I called and made that oh-so-helpful pediatrician do the paperwork. I've talked to friends in the medical field and got some invaluable tips about other possibilities, procedures and ideas. I'm determined to see this through. If it means I break down and cry to the GI doctor next week, I'm not leaving without a plan.

It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.

I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!

Lesson #3: Love

Awhile back, I was talking to another mom who confessed that she'd always been worried about having a special needs child because she was afraid she wouldn't love them the same. I really appreciated her honesty and the positive context of our conversation. It brought this lesson into focus for me.

When Carver was born.... no, before he was born... I loved him. I loved him because he was mine, because our lives are intertwined from the beginning and connected forever. When he was born, I got to meet this little guy I already loved and it just grew from there. Now, my experience with Carver isn't the same as someone who knows during pregnancy that their unborn baby has disabilities. I can't pretend to know what that's like. But I have to imagine that you still had time to love them first. That, for most of us, we wanted to be pregnant and we wanted that baby. That is where the love all starts. So no matter what happened, what disappointments were in store, we began with love.

It's a very emotional journey to diagnose disabilities like Carver's. I felt a lot of worry at first, those typical comparisons, some jealousy of other mom's little boys, fear of the future. I had to put all that on the table to get him evaluated, to be ready to face hard things. But I loved him too much NOT to. I wanted him to have help and I needed it, too.

It's a different kind of love to care for Carver than for my girls. I feel more frustrated, more impatient and more inadequate as Carver's mom - absolutely! I don't love him LESS for those feelings. I also feel more protective, more invested, and more sure that he needs me. It creates a different kind of love. A fiercer emotion, perhaps. But I know for sure that it isn't more/less than the other sorts of mother-love I feel for my girls.

I love that quote I just put on the sidebar:

“When I approach a child, he inspires in me two sentiments; tenderness for what he is, and respect for what he may become."

That is just beautiful to me! And it's so true for children with disabilities. I love Carver for what he is now, for how far he's come and for all that he teaches me right now. And I certainly hope for his future and what he will become. I'm so grateful for other people that love him, too - his bus drivers, his preschool teachers, therapists, his sweet little friends and mine.

I love his smile, how he dunks his head in the pool, how excited he gets about simple things, how he's starting to fill in words to songs I've sung him again and again, how he snuggles in bed with me, the way he jumps and runs, the way he hugs me and wants to be with me. I love him fiercely, always have and always will.

And you know what? Having Carver has taught me to love on a new level. Those kids on his preschool bus have such a special place in my heart. I want to know their names and their stories and I'm just cheering for them because I know that they have challenges just like Carver. When one little boy started telling me all about the bus stop sign he could see out his window, I didn't understand a single word he said but I knew what he meant. And I loved him for telling me about it. It's easy to see the innocent in children with special needs, but I think that what really happens is that loving them purifies US.

Lesson #2: Don't judge other parents

Carver is NOT napping at the moment and I'm here supervising that little bit of rebellious behavior. I might as well be productive about it, right? Lesson #2 comes next because it's the next one on my mind. No order to this whatsoever. Check out Carver and I in this group shot from last summer's trip to Disneyland. It's a great one for this topic.... :)

And I'm going to be honest here. Don't we all see kids behaving badly at the park, in the store, where ever and wonder what their parents are thinking? It's only natural to assume that the 5 year old making a scene in church has never been taught reverence, right? And that 4 year old with a pacifier is over-indulged and babied by parents who won't help him grow up? Wrong.

Carver's disabilities don't show. He doesn't look different from other kids, most of the time. He wore his SPIO suit for awhile and sometimes he has drool or yogurt on his shirt that most 3 year olds don't have. But otherwise, his disabilities qualify as "invisible." So when we are at the park, in the store, at the doctor's office - other people see his constant physical motion, inability to follow directions and tantrums as signs of bad parenting, right? Probably. Sometimes his behaviors give clues to other parents that there is something wrong and they might ask, they might not. But plenty of other times they wonder why we can't control this kid who looks like he must be 4. But his disabilities are REAL and so we look and sound different from other families sometimes. I'm sure lots of people have come to inaccurate conclusions about us because they only know part of the story.

So if Carver's difficulties are invisible, what else might be? How about sick children? Maybe they missed their naps, maybe they are going through a difficult phase, maybe whatever activity we see them in happens to be the hardest part of their day. We might be seeing someone at their very worst. Or maybe it's just a huge success that they made it out of the house that day, for whatever reason. There are so many invisible challenges, so much more to everyone's story than what we see in a brief conversation or even in an afternoon at the park. I'm trying hard to remember that and I'll tell you what - my perspective has really changed as I look around and give parents the benefit of the doubt. I'm pretty sure we're all just doing the best we can. Until you know the WHOLE story, it's just not time to judge.

Lesson #1: Letting go of the guilt

This is the start of a series that'll probably last my whole lifetime. I want to record lessons I'm learning from being Carver's mom. One of the first things I learned was about guilt. When Carver was just months old, I worried about how he wasn't smiling at me. He didn't do that normal infant behavior of watching your face, opening his mouth and cooing along with you. I kept waiting and waiting and FINALLY he did it once right around Christmas. He was 2 months old. He didn't engage with me often, even after that point. This was the first time GUILT started to sneak in.

I worried that because he was number 3, I hadn't spent as much time talking to him as I had with the girls. He spent more time in his bouncy seat, less time just being looked at - all that firstborn stuff. I swear I just sat around and watched Lydia grow! :) As Carver continued to miss milestones, there was lingering guilt and worry mixed together. That somehow I'd not been nurturing his development enough, that if I'd done something differently he'd be on track.

Even though I worried, there came to be a stronger sense of peace that Carver was just Carver, that I didn't cause it. I'd been careful during pregnancy, his birth was fairly uneventful. He'd been posterior, I hadn't had an epidural - but otherwise, no warning signs. I really believe that the Lord was helping me feel that it wasn't my fault.

A scripture that has become really meaningful to me is John 9: 1-3.

1 And as Jesus passed by, he saw a man which was blind from his birth.

2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

What a beautiful reminder that disabilities aren't punishment! And that our lives are in the hands of God, that He has a plan for us. When I reflect on all I've learned and all the ways I've been stretched (both as a mom and as a person), I see that the works of God have been made manifest in my life, in Carver's life, and in the lives of so many more. And I know that everything is going to be okay.

So the lesson I learned early on about letting go of the guilt has continued to be important. You have to let go of the worry that you've CAUSED the problem, but I also have to continue to remind myself that I'm doing the best I can. I'm not a perfect mother to my typically developing children, I'm not ever going to be a perfect mother to Carver. And my faith in God comes into play here, as well. I know that Carver wasn't accidentally sent to our family, that the Lord knows that I can do this. I can be his mom, I can be good enough. That gives me courage to let go of the guilt and keep trying to be better.