Tuesday, November 15


I think it would be fair to say that right now our house is surrounded in a construction zone. Living in a brand new development brings every loud noise you can imagine. We have houses being built on all sides of us and from dawn to dusk there is jackhammering, bulldozing, hammering, etc. The noises are loud. They are sometimes unsettling to a toddler.It may just be hard to tell when the noises will stop and where those noises are coming from.

In the world of a almost 3 year old - noises like these are frightening and it has taken me some time to realize why they may be. This is what I found: As adults we live in the world that we have already grown to understand. We already where noises come from and that we are safe from them. Adults have the knowledge of what that sound "could be" but for toddlers it can be the fear of the unknown....

And it would be fair to say that many toddlers have fears, especially as they begin to explore the world. They become smarter and learn that they are not always "safe". They learn the world is full of  things that are sometimes unpredictable. Many toddlers( like Madeline) are smart enough to know that the world is much bigger now. Madeline is smart beyond her years....she has learned to fear a little more and I blame some of this on Cystic Fibrosis.

After countless doctors appointments due to cystic fibrosis, Madeline has learned to fear that hospital/doctors offices are the MOST unpredictable places to walk into. She has learned that stickers and mommy hugs will not take away what those places hold. She has begun to think that most buildings that have a waiting room and are  followed by small rooms are indeed doctors offices or hospital settings. She has learned to not trust me when I tell her "It's not a doctor's office." She has learned that sometimes your mommy brings you to these places often(cf clinic) where they stick you over and over, shove swabs down your throat, take countless x-rays, and do countless other painful or painless tasks.

 She has been doing this routine for almost 3 years now and she is aware.She knows that each visit is unknown and that clinic brings uncertainty.  She sits for 3 plus hours every day at home (with little fight )doing her nebulizers. She puts up with a lot.  Most cfer's will tell you "it's not always easy- but it is MY life." She rolls so well with the punches....so sometimes it's the other parts of life that can become hassles for her since she is practically perfect for the "cf life".

But unfortunately, having such a fear...can make you more cautious about other fears you should look out for (sometimes irrational). She fears the construction equipment, she fears unknown noises in stores, she fears not knowing when the noise might come or how long it will stay. She holds her hands over her ears and says "all done". Madeline really wants these fears to go away but she feels them. She is immune to loud noises (blasting TV, noisy compressor) but only when those noises are not known....much like the doctor...much like what Cystic Fibrosis brings.

It's been hard pulling her out of her "fears" in the past few months. She seems to be getting better at home by naming what each noise is as she learns to say..."That is the microwave" as it begins to cook food or she points and says "ice maker!"

And initially, I was sad for her because she had all these fears. I began  to worry that first Cystic Fibrosis was making her fears that much worse. And then I realized....

Yes, she is afraid of things but, really she just wans to learn more about what is making the noise. Once she can identify the noise, she is perfectly okay. In fact, she is MORE than okay.  I have learned that my child wants to feel safe in a world where she is asked to do so much and take so much (treatments, medications) while learning more and more.

Oftentimes the screams and the "ear covering  moments" are eased with simply her favorite pass time-  singing and dancing...
Here is a perfect example:

 We went outside today. A bulldozer whizzes by. She screams and covers her ears. She is clearly showing fear and is irrational. Nothing will work ....

Through many failed attempts as her mother, I have learned that often the one thing that may work is singing.
She LOVES singing.

I start singing and doing a finger play. "If you are happy and you know it....

If you happy and you know it shout "HOO-RAY" (wish added hand gestures over head for hooray!")

and another.....

And below....(singing her heart out)....while doing more gestures

Although this method doesn't always work, I am getting better at finding way to distract her and she is learning to deal better. I am learning with her and we both will continue to try to make sure that Cystic Fibrosis doesn't controll all our fears ...(at least not ALL the time!)

1 comment:

  1. You three go through so much that the rest of us take for granted. Madeline is amazing and your strength awes me. Much love from our house to yours.


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