Our Future Heartbeat: October 2014

Yesterday we had our Trunk or Treat at church. The moments prior to the Trunk or Treat were a little hectic as we quickly realized that Tyley Sue's dress was entirely too big for her little body! So, I got out some scissors, cut a chunk out of the back of the dress and safety pinned it together! I put a cardigan over it, so no one could tell the difference and I hurried out the door with the Cowardly Lion and Dorothy in tow. There were a lot of people there (really there were a lot of girls dressed like Elsa) which typically doesn't bode too well for Tyley Sue. She usually kind of shuts down in large crowds with lots of noise and just takes it all in. After walking around with me and my parents and eating a hot dog and riding the swings, I decided that maybe, just maybe, she would walk around with her little pumpkin bucket and let people give her some candy. We made it down to 4 other trunks when she started pitching a fit and "melting" as I like to call it, because I was trying to help her hold her pumpkin and because I wouldn't let her dig into the bins of candy people had, so we decided to quit as she started repeating "ma, ma, ma, ma" to me.....which in Tyley Sue's world means she wants her milk. So, I made my way back to our trunk, sat in the chair and rocked her with her "ma". We were surrounded by people; trick or treaters, music, talking, playing, a loud hot air balloon; but suddenly everything was quiet in my head and all I could think about was how different my life is and my child is from every other three and a half year old there.

Typically, I'm so busy with the day to day tasks of life, that I don't slow down enough to think about how different things are. For my family all of the little things that make Tyley Sue, Tyley Sue, have become our normal. My non-verbal kid uses a picture book to point out what she wants *sometimes*. Other times she just melts down because she can't figure out what she wants, much less commuicate it to us in any way. She sits at the dinner table *sometimes* and eats with her hands, never with a spoon or fork, not knowing when she has too much in her mouth and continues to shove food in despite there being no more room to even chew what she has. Our mornings start a lot with crying from transitioning from sleeping to awake status, and she can't hardly function until she's had adequate time to rock in the chair while being snuggled and drinking her "ma". The thing that happens daily at our house and also one of her favorite things to do, is run around with a wash cloth in her mouth, chewing on it constantly, while watching cartoons as she jumps up and down and occasionally bangs her head on the bed or couch(thankfully she chooses soft surfaces to do this on). When bed time closes in on us, we go through a nightly routine of putting on her pajamas, placing essential oils on her neck an hour before bed and diffusing oils in her room, and then warming her weighted blanket in the dryer for 15 minutes just prior to placing her in her bed. I honestly can't paint an adequate picture of what life is like with my girl, but I can promise you that it is a lot different than what most parents of three and a half year olds are doing.

I wouldn't trade it for anything though and I don't want any other child but Tyley Sue, however, last night for just a moment, I let my mind wander and that part I keep turned off most of the time, clicked on, and the part of my heart that I keep under locks in public, broke free for a second, and I thought about what life would be like if she didn't have so many special needs and quirks. I wondered how fun it would be to walk along with her and trick or treat as she really enjoyed what we were doing. I looked at my friend's two,three, and four year olds and wondered what life would be like if she were like them. I wondered what emotions I would feel if she told me that she loved me, said mommy, or daddy.

I find it strange that I wonder about this imaginary version of my daughter, yet I never wonder about an imaginary version of Elijah. I guess this is just one of those things that we go through with special needs children, and I wonder if it isn't really just a manifestation of the continued cycle of grief we go through for the death of the child we imagined we would have.

Now, I don't want you to think that I'm sad with what I got; because I'm definitely not. I love her more fiercely than I ever thought possible and to me she is perfectly imperfect, like I've said before. She fills my heart with so much love and happiness. She fill my arms and my lap with the best hugs and snuggles I could imagine. Rocking her as her chocolate brown eyes look deeply into mine, is one of my favorite things about my sweet Sue Sue. I guess, there are just moments, and thank God they are fleeting, where I just can't help but wonder who she might be if that little piece of the chromosome appeared in the right spot. As I sat in the dark with her head laid on my shoulder I started to tear up at all of the thoughts flooding my mind when my mom popped up next to me and asked where my dad was. The moment passed, the "ma" ran out, and Tyley Sue was soothed and rejuvenated by the few moments of rocking and drinking she had.

She then sat in my lap laughing at me because I starting coughing after she finished her milk. She thinks it hilarious when anyone coughs or sneezes, which is funny in itself to me that she finds it so funny!! There was a time when we longed to hear Tyley Sue laugh. She didn't really start laughing at things until over the past year, and now she only laughs infrequently and at the most ridiculous and inappropriate things! But, as she laughed last night, my heart was filled, and that little part that comes out every now and again, the fears, doubts, concerns, wishes, sadness, grief; was put away and locked back up. I moved on, letting it all go (I channeled Elsa from Frozen since there were so many there ha ha ha), because that is just what you do to keep it all together for yourself and your family.

I think God knew in that moment I needed to hear her laugh and I needed to see her really enjoy the night, even if her way of enjoying it was different from the ways of other children. Her sense of enjoyment came at that moment from simply being rocked and held and soothed and then being allowed to run, jump, and clap for herself. Her enjoyment didn't come from the candy, the costumes, the decorations, the jumpy houses, or hot air balloon; and that's okay and it's what makes her unique and special to me and to most others who know her. I'm thankful for her and that God allowed me to be her mother because this little girl sure is teaching me a lot!!