Being a Special Needs Mom

Introduction (It's worth a read, I promise xxMelissa)

I am new to this blogging thing. I have always been an avid journal writer so the writing part comes easy to me. Being brave enough to cast my raw words into the void? Not so easy. To say the truth, to say the hurt, to say the extreme levels of the heart. I really only feel deeply when I write. Otherwise I just like being joyful and humming while I clean like Snow White or wandering on walks and singing to myself in the forest like Sleeping Beauty.

I have read a few articles written by other special needs Moms. Words and phrases that come up often are lonely, detached, feeling too many feelings, just bear with us, be our friend even if we cant be a good friend, and sometimes I just can't. These phrases most often are followed by, but I couldn't live life any other way, we are so blessed, God knew, love, tears, smiles, proud, I waited for so long.

In my Lily series here on the blog I am hoping to demystify this Special Needs Parenting persona. It is a world no one will understand until it happens to them. But by sharing my heart I know it will bring out the understanding and hopefully the empathy needed for you to see things in a different way. So here I go. I put on my best Earnest Hemingway and after way too many drinks.... (cherry coke zeros)....I wrote my first excerpt. Grab a warm cup of cocoa and a cozy blanket, this might take a while....Oh, and snatch up that box of tissues or handkerchief. This isn't going to be easy to hear, but rewarding to feel. Hugs if you've even made it as far as clicking on my link and reading to this paragraph, also....I am in no way a grammar expert, quite the opposite. Ha ha! Enjoy.

Being a Special Needs Mom

I am having a perfectly lovely day. I needed to head to the craft store for some shop supplies. I had just gotten a wreath order and was looking forward to creating it. I always take my time at the craft store. Is there any other way to shop?! I can compare it to how most mom's wander Target for no reason. Just.....wander, and it feels so good. Decompressing. 

I weave in and out of the isles and touch everything, smell every candle and wonder how people can scrapbook as I pick up a package of teeny tiny skeleton keys and smile. Nope. Too vast of a world for me nowadays. Moms are with their sons getting science fair project supplies. Uh oh...wasn't my son suppose to get a board for that?......yikes, I'm in the same boat. I watch a new mother and father stroll their chubby baby in their stroller while the father reaches out and pinches the mother's behind. Ha ha! That made me laugh out loud. 

I look around and find that I have wandered down an isle I usually don't wander down. I find they have dedicated an entire isle to building detailed fairy houses. I die. All the heart eyes. As a child my father cut down these huge bushes out front and left a stump lying there for a while, so I built my own little fairy house out of it with acorns, and leaves, and snail shells. Sigh. I adore all things fairy. I touch and admire the little fairies, the mushrooms, the magic doors.....but I am not really smiling anymore. I'm hit with a wave.....no....a blanket of hot, sad, something. What the heck is this?! I decide I better leave, which is hard to tell the fairy in me. Don't worry, I got all the supplies I needed and forgot the science fair board. Ha ha!

I get in the check out line, brushing off that weird sensation I had felt down magic isle fairy land. I watch the mom in front of me. Her daughter who must be 3 or 4 is sitting on the floor next to her playing with some stuffed animals. Oh my, they are having a grand time as she plays their voices. Where will they have their next tea party, what will they wear. I am smiling so big as something starts stabbing at the emotions in my heart. It's my turn to pay and once again I shake it off, snapping back to reality.

Heading home, I turn up the radio and dance to Stayin' Alive as that is my theme song lately when I drive. My glasses broke and my new pair won't be in for another two weeks! Well, you can imagine the rest. I get home safely (phew!) and enter the kitchen feeling......heavy. Something heavy all over me, all over my soul. Usually I sing while cooking dinner or watch the latest masterpiece theater show.....but as I filled the hoagie buns with the french dip I had just pulled out of the crock pot, I am quiet. I can't put my finger on it. We sat down to eat and talked about the day. As we clear the table I read a text from my cousin about how her daughter and husband are on their way to Princess Palooza. A Daddy Daughter date in a princess dress and his nice shirt and tie......BOOM.....it hit me. 

I have to remove myself and shut the door to my room. I sat down and just cried. Not a whaling cry or a sniffling cry. The cry of absolute defeat. Hot, large crocodile tears. Quiet, quiet, silent tears. True, honest, and deeply sad tears rolled down my cheeks making my mascara run. Trying to wipe them away with my hands proved impossible as it seemed my hands were constantly soaked by these larger than life tears. I realized I was grieving over Lily. It was time again. It always surprises me and if you know anything about me, I hate surprises. It was as if my cup that holds my grief was overflowing, spilling over, in waterfall amounts. 

Every so many months I grieve over something different about Lily and life. It's as if I begin the grieving process over each time. This time I was feeling something new. I think I was craving the interaction you get when your child tells you in their own words with their own voice their view on life, on their little world. Their view on princesses or fairies, their laughter and giggles over dancing on their Daddy's shoes while holding a fairy wand. Their cookie dough messy face while helping you bake, the feeling of them tugging on your leg. My neck ached. It ached and ached to feel Lily's arms around it. Tight in a hug.

I was frustrated. I just wanted to hear her voice say, "Mommy guess what?". I needed to take her to the craft store and let her also touch the magic fairy doors and laugh over the mushrooms and wonder at the moss. I needed to help her into a princess dress and laugh as I watched her twirl around the kitchen and jump into Daddy's arms. Oh man, if I am feeling this way, how is Brian feeling about his only daughter? I was so angry now. I was so sad. I felt that blanket of grief again. SO heavy, so suffocating. I felt like I was in a swimming pool where I could barely touch the bottom with my big toe and the water was right at my nostrils but I had no strength to tread but also knew I could not sink.

I was holding on too tightly to this grief, to this expectation. The expectation that comes when your mind finds out it will be having a daughter. I calm down a little and see that these expectations are stealing my joy, my freedom. My tears stopped. My hands are finally dry. I had finally let my entire cup empty out. There were no more tears to even shed. My cup was upright now, empty.....ready. Now this, THIS is the point that defines you. This is the moment where you find out what you are made of. I had let the grief completely consume me in those moments and it was needed. It was awful. But now? It's time.

I pick myself up, dust myself off, burn the shit out of that blanket of grief, and start all over again. I cleaned up my face, my eyes stinging from filling with too much makeup. I was ready to finish the dishes. I head back into the kitchen and my sweet boys know what happened. They smile and hug me, and off to showers they go. I think to see me that way reminds them this is real, and raw, and beautiful. I walk into Lily's room and see her on my husband's lap. They are playing a new game. She is facing him and squatting with his face near hers. He bounces her over and over while she makes a hilarious screeching sound. When he stops she taps him with her hands in the same rhythm that he bounced her. This means, "Daddy do it again!". So despite the fact that his arms are hurting he does it again. She makes him laugh so hard, and she can't handle how much fun she is having, and I hear a new laugh come out of her. It sounds like an actual toddler laugh. God knew. He knew I needed to hear that. My husband is in complete heaven laughing at her laugh. He isn't bothered one bit by the fact that she isn't dancing on his toes because she is bouncing on his knees. It's the same thing to him. He looks at her with eyes that only see her true self and he always says he wouldn't want her any other way. I remind myself to see her more like her Dad does.

I swear this much grief and this much joy in one sitting should kill a person, and yet I keep doing it every couple of months. I come out stronger, more empathetic, happier, and knowledgeable. I am more in tune with what my mind needs to do to process these emotions one more time...but you see? That's what these special needs children do to us. It isn't that we were already strong enough to handle having them. This is why they come into our lives. We NEED them. We desperately need them. They push us to higher ground just by being themselves. They create emotion within our hearts we never knew existed. We've never loved so deeply, been so angry, felt such sadness. All the while feeling this ecstasy of joy, purpose, and drive.

They wake up each day happy. Present in their trial. Why can't I? If she can be so happy under this much strain and ache, I can too. I know this is what she would want of me. I know that is why God has entrusted us to each other. So.....my cup is empty. Ready for filling with more grief until it's time to overflow and that is okay. This is the new normal and it's better than the life I knew without her. I was a butterfly trapped in a cocoon and Lily came along and taught me how to feel free and flap my wings.

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I hope you look forward to my next excerpt where I begin the back story of how Lily graced our lives. For now, go hug a friend who is going through something you don't understand. Stop by and just say Hi. We won't ever admit we need it because the only thing on our mind is how to survive, and not much beyond that....and its okay with us. We are finding joy amidst the heartache, somehow. It truly amazes me each time I think my heart will shatter into a million pieces as I frantically try and pick them up and glue them back together before the wind blows them away. But somehow, my heart gets stronger and stronger daily. Humans are truly miraculous creatures. So take this wonderful life you have and pick yourself up, dust yourself off, and start where you are. Everything you have been through and done in your life has led you to this point, and it is all for a reason.

xxMelissa