Expanding our world

Expanding our world

Those who have known me long enough know that I am a relatively private person.  In fact, I think many were surprised when I started to write this blog.  At first it was something very few people knew about, and over time I have slowly expanded my audience.  However, many of you have noted and commented that I have not really written in the last year.  To be honest, a number of big events have happened in the last year (including the birth of my son).  Some of those events have impacted my mental health, and while I have struggled with anxiety since I was a teenager, the last year has put me to the test.  When I do struggle with my anxiety, I tend to close my world to all but a few close friends and family.  While I fully intend to write at some point about my struggles with mental health as a special needs parent, that is not what this post is about.  This post is about how, despite everything I have been struggling with, I have learned the importance of expanding the world around myself and (more importantly) around Lyra.

As we near the one year anniversary of Lyra’s scare last year (please see my previous post), I often reflect at how far she has come.  Yes, I still deal with the trauma of that event, but it honestly isn’t where my mind goes first.  What I think about most is how big her world is has become.

You have to understand, when you have a medically complex/fragile child, your world is quite small the first three years.  All therapists came to us.  We rarely traveled outside of the state.  Oh, and forget things like daycare.  Her little body couldn’t handle exposure to all those people germs. Since Lyra is also very delayed physically, she couldn’t participate in any sort of toddler dance classes or gymnastics or anything.  We had this small little world of family, a few close friends, doctors/nurses, therapists, and a case manager to hold our hand.  When Lyra turned 3, that all changed.  She was no longer in early intervention and many of the services that help guide us were no longer there.  Getting access to many new services meant entering the public school system.  It was honestly terrifying.

Little did I know what was in store for her…. and me.  Because of Lyra’s health issues she started preschool a month late, in October.  I was terrified to leave my baby with people she didn’t know, hooked to her feeding pump, and exposed to 15 other children in her classroom.  She couldn’t communicate to them what she needed, if she was scared, if she was sad.  What happened over the next 7-8 months was nothing short of astounding.  Lyra went from almost never using her walker, to it being her primary mode of transportation.  She went from barely eating anything, to being interested in food and developing new oral skills.  Before she primarily ate yogurt, purees, and things that easily melted her mouth.  Now she eats cut up fruit and pieces of peanut butter and jelly sandwiches (she still eats only very small amounts and gets about 95% of her calories through her tube).  Most dramatic is her cognitive change regarding language/communication.  Before preschool it didn’t seem like Lyra understood the point of language.  She didn’t seem to have any motivation to learn how to communicate with us.  She was happy and easy going and didn’t seem to be interested in what objects were or in asking for things.  Now, she gets it!  She wants to communicate.  We still haven’t figured out how to do it, but we are working on it.

Lyra’s world has become so much bigger.  She has meant so many more people and developed skills at a rate we have not previously experienced. She has developed bonds with adults outside of our little circle, and they have bonded with her.  It makes me smile to see how much she has embraced.

I have also learned to embrace a bigger world.

What I have learned in the last year is that there are more people than you know who are ready to support you.  It can be a stranger holding your hand while you cry in a hall at the hospital in the middle of the night, to a mom in your child’s class who makes you feel like you’re just a normal mom too. Not only have I made new friends in the past year, but I have opened my life to old ones I haven’t spoken to in over a decade.  While I have spoken before about my willingness to let go of those who are unable to go on this journey with me, I have learned this past year that more people may be willing to walk with me than I had imagined. I simply had to open the door to give them the opportunity.

So, as we go along into this next year of Lyra’s life (how is she already 4?) I have to keep in mind what having a bigger world has done for her.  Even if it is scary for me, it’s better for her now.  And she can handle it…… And so can I.

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Lyra and her baby brother

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