Friday, September 21, 2018

Balance and Acceptance

I won't pretend that I have accepted any or all of my daughters diagnosis' completely but in the past month, I have come to an understanding that this is the path my family has been given. I can choose to walk it, weight in the mud and hoping that I succumb to the heaviness of my heart leaving behind the life I felt was perfect for mere existence or I can choose to walk with strength facing the path, though rocky, climbing those rocks allow it to lead our family and perhaps the surrounding community to something beautiful. I have chosen the later.

Today, I face a small rock, nothing that I cannot pass but as I sit here, freshly showered, I understand that my journey to balance and acceptance is one that I need to work on every day. I also understand that my journey is my own and every individual with a child who is not whom they anticipated has to face their own journey and make their own path choice. Today, there is a part of me that wants to come clean. I don't always want my daughter included. I accept that its hard for her and I even accept that sometimes its hard for others. You see, I know the situations that can be challenging for her and while I wish more than anything she could be part of her class, I understand that it isn't always the right answer. Today, part of me is struggling to pull my feet up out of that mud, you see, I am scared. I often find that when we feel unsettled or fearful we act in a manner that is not truly who we are intended to be, I believe however with experience and understanding we are able to conquer those fears and meet them head on. It is grandparents day at school and although there will be no grandparents in the audience, I am going in to celebrate the day with her...but I do so with anxiety and hesitation. You see, I know there will be families there that don't know Seraphina, they haven't witnessed this journey of autism and they too have their own baggage that they carry on their own path. I also know what is to be true for many kids struggling with disabilities, at any moment, she could be fearful, upset or overwhelmed, the experience could end up with a teacher having to guide her off the stage and into my arms or she could rock it, either way, people will most likely notice and will have their own thoughts and understanding because like me, they too have children they love, cherish and dream of reaching goals they once found unattainable for themselves. I believe as a parent of a child with a disability we have to be balanced. We have to know when its okay to say, forget it, throw in the towel, this isn't for them. It isn't because others don't want my child but it is what is best for my child and the children she has surrounding her. I am fearful today because she seemed off. She ate 12 pancakes for breakfast and was craving deep pressure. She refused to wear pants and though we had no melt downs she was a bit more adversarial than she has been in the last few days. I do however want to see her on stage, with her peers, singing, or at least standing along side other children she may one day befriend. I accept however she may not step on stage, that is okay. I also accept that her teacher may need me to take her into the audience or home, that is okay too. Its not about the grandparents day or the songs on stage. For me, it used to be, but this isn't about me, this is about her. This is about me being chosen to guide a child that is so special on her own rocky path. I have emailed Seraphina's teachers twice today.  At drop off, I let her speech teacher know she needed input and when I ran into her OT, I gave her the same message. I am no autism expert, but I am her expert and something inside me tells me today may not be pretty. I am working on finding balance and understanding along with acceptance and today, I will have to do my best to practice that. I won't care what others think nor what is "normal", I will however give my child what she needs and accept where she is at today, and for me, that is finally balance.

Sunday, September 9, 2018

In Five Years

In five years, I have learned more than I did in the previous 34 combined. As a mother of four, I thought I had it down but then quietly, you slipped into our family and stole what we knew and replaced it with unsteady ground.

At first, we were anxious and unaware but in time we began to find the little gifts that you brought with the person you were created to be. We learned to advocate and speak up. We chose to see the goodness in each small step because we had no idea if big leaps would ever be taken again. 

In five years, I went from being the mom unsure of how to act around children with disabilities to be the parent first to say "hello" even if it seems to be the awkward thing to do because I know what that "hello" could mean to the child or the family. I have watched as my children embrace differences, challenge others to accept differences and support those who feel different.

In five years, we have seen friends come and go, our lives change significantly and our love truly grow. We have finally found "home" after searching for years and swearing that this place, this home was just a temporary stopping ground and now, because of you, I see family in friends.

Five years ago tonight, I was sitting in a hospital room only to be sent home to labor at home knowing within hours you would join our family. As I laid awake counting kicks and contractions, I wondered who you would be and how you would impact the family. The wonder I felt would never compare to the answer you were to give.

Five years ago, as we drove, in hard labor to the hospital, I begged you to hold on until we arrived safely in a place where you could arrive and instead, five years later, I continue to beg, to allow me to hold on as you teach me that I have to trust, have faith and let go. 

Five years ago, I feared losing you and now, I fear losing you more because of who you are what you have become and who you have taught us all to be. I watch as your oldest sister has become more of a second mother, your brother your protector and your middles sisters still relish in childish moments because of you and your loves in life.

Five years ago, I thought you were not the completion to the puzzle, I imagined our family growing, my back aching carrying child after child but you see, child you are the completion to the puzzle. You filled our hearts and completed our love.

Tomorrow my love, I will hold you. I want to wake up and breathe in you. I want to look in your eyes and count your eyelashes. They are perfect. I want to remember. I want to stare at all of your beauty and realize that your outward beauty is nothing in comparison to who you are inside and who you have called those around you to be.

I will hold my breath as you go off to kindergarten tomorrow and hope that you will wear the outfit I picked especially for you and if you don't, for the first time, I will understand. You have a strong mind and will and you are your own person. Sometimes we have to carefully peel the layers of the person you are to see the unique beauty you possess. 

Tomorrow, as you go off and I sit with a big cup of coffee, I will think about who I was before you rushed into my arms on that sweltering September night. I will think about the stupid stuff that bugged me...matching bows, even ponytails and a perfect outward appearance and I will realize that all that outward perfection, broken away, chiseled and broken allowed me to begin to grow into a better person because of you.

Child. You were not planned and how your dad struggled with your presence but your presence has brought so much more than anything we could have imagined. You have made me a better person and you do each day. You have touched others who I thought were untouchable and you have changed hearts of those who would never have understood.

In five years, you have brought us to our knees, you have made us stand up. You have held a marriage together because together we have you and you complete our circle.

Tomorrow, we celebrate the little person you are but in that little body, that little soul, there is so much I can never put into words. The days are hard. They are so hard but when I look at where we were and who we were and where we have come I can only be hopeful for where we are going.

Sweet Seraphina, Happiest Birthday to the child God knew we all needed to be better people. I pray tomorrow you feel the love that surrounds you and in the coming year you find happiness, health and of course hope for your future.

Love you to the moon and back, to heaven and beyond.

xo Momma

You Cannot Pour From An Empty Cup

As everyone had said, learning of a disability isn't something you can fix, though I was certain that I could. I had been touted as a child whisperer long before I ever dreamed of having my own family. I was the Pied Piper of children at church, the barn, camps that I attended through my entire childhood. I was the mom that let kids make peanut butter Play Doh and watched as my kiddos trampled through mud puddles as a homeschool mom. All those moments could not prepare me for the diagnosis of autism for my youngest daughter. Instantly all my efforts were channeled into her and the challenge to "heal" her or fix the diagnosis. That was two years ago, I was told by many it was a marathon and I was moving as if it were a sprint. I didn't listen and plugged away. I read. I researched. I tried to parent and then, this year as her disability got more challenging, I crumbled.

I think for me, the first moment that I identified I needed to begin to focus a bit more on myself was the moment one of her therapists indicated it was time to consider medication. At four? I didn't have enough time to heal her and I had read books by famed mother, Jenny McCarthy. She healed her son and I was no less capable than that blonde bombshell. I needed more time. Then it happened. That same week I sobbed as my husband traveled and I ended up bleeding with bites, scratches and a black eye. Maybe there was something to this suggestion and when I called our regular pediatrician, he indicated it was beyond him. Well, if its beyond someone with medical training and experience, perhaps then this diagnosis is beyond me alone. My older kids would come home from school asking if I was okay. That isn't normal and I knew it.

My husband and I had a long discussion and although he rarely gets his own time, we decided since I was the primary care giver and I would be alone with all five of our kids more in the future, it was in fact time for me to take time for myself. I decided to take time for myself even though it felt awkward and uncomfortable. So how did I do it and find time?

First, simply. I took baths. No joke. I tried to find time to take a bath, once a week. When that didn't work as kids came in and out of the bathroom, climbing in and out of the tub, I decided that very simple activity wasn't going to fill my cup so it was back to the drawing board.

I tried reading but found myself unable to get through a book. With all my outside activities, it was a challenge to read a book a month and though I kept ordering them and Amazon kept sending them, I had stacks on my night side stand taunting me with their rich wording and opportunity to step outside my world but actually cracking that binding was something I never found time to sit and do.

I quickly realized finding time for me and time to fill my cup wouldn't be as easy as I had anticipated. My husband kindly offered a trip. He travels a ton and has points up the wazoo but I knew that wouldn't be for me. Small, simple acts mean that I refill and recharge ready to face the challenges that parenting brings and the added challenges of parenting a special needs child.

What could I do? What did I like? How would I find time for me? It took a little soul searching. I knew that this wouldn't be something that I could identify immediately. With knowledge that there would be a new yoga studio opening in the town, when the special was posted on Facebook, I jumped on it. Yoga. Time. Peace and opportunity to attend when my kids were in school. This was it. It would provide opportunity for self discovery, inner peace and a bit of exercise when I busted a move on the mat during flow classes and so, in late August, I began.

Its only been a couple weeks but I am slowly feeling better. I am learning its okay to not be okay. Its okay to struggle and be open and honest with the challenges of this life. Its okay to be honest with my children because they too have feelings about living with a disabled child and its okay to have good and bad days on the mat. Its just okay. And slowly, my cup is filling up.

My husband has been kind and started to identify when I really need a break and started to insist I get out with friends. So sometimes, outside the yoga studio, I take a break. I have to be mindful that the house won't look like I had hoped and the chores won't all be done but I will be centered and reset to begin my days again, with a clear head, friends who have supported me and the opportunity to pour from my cup more fully.

So, after a few months of desperation and despair, I came across a reminder. The quote said "stop asking why me and start asking what is this teaching me". This empty cup, this journey, this challenge has begun to grow me into a person that I am starting to like, a person that has value and worth and although I never dreamed I would be a special needs parent, by taking time for myself, being honest in my feelings and finding ways to refill my cup, I am finally, content.

Special Credit to Susanna Harwood Rubin and her book, Yoga 365, for there I find rich words that power me through the difficult days.

Friday, September 7, 2018

SH&T, Its Not About Me

It hit me. Like a ton of bricks. It was actually more like a crumpled pile of self laying on the the floor of the family room drowning in my own tears but it was there. Sh&t. Its not about me. This life, this parenting journey and this acceptance of the journey that you may not anticipated.

It began with a call.

When the school number pops up, I immediately draw in a breath. Its usually one of two things. Seraphina or Jude. Typically Jude's antics make me giggle inside as we have a deep discussion about how "calculated risks" still count as talking back to teachers and administration. While he stoically walks away to serve his in home punishment, I crack up relaying his conversation to my parents, his father and ultimately my friends.

There is also the other call. Seraphina. Some days its nothing big, a bump to the head, a bruise on the face or maybe she's just "off" but there are other days when my heart sinks as I hear the loving voice of the Principal on the other end of the line.

I won't share much but her Principal is more wise than many, understands what most never will and is truly in the field to give students the future that a parent can only imagine. She's there to build up those that need it, bring others down to earth and give each child an opportunity to shine. I mean it.

However, yesterday as she spoke, I began to well up. It may be the massive sinus infection I am fighting or it may have been the fact that what I feared going into this school year actually happened, my child, the one I had been noting as violent got violent with her teacher. My heart immediately sank. I thought about the teacher and why it happened. I thought about how Seraphina felt. I also thought about my friends, holding positions in the district potentially being faced with the wrath of autism. I began to sob. This life, this journey, this path, its not what I chose.

I harbored those feelings all day. I thought about what it could have been, where our lives would have been and how our lives were following this path I never anticipated nor dreamed of and lamented the loss of the dream I once had.

Then, after a long chat with the one I am certain is my other half, it hit me. As I lounged in my bed, recalling the incidents of the day, unable to sleep full of fear of what may be it became clear. This life, this journey, I am just a guide. I was not meant to be the leading role or the main character, I am simply here to support. This child, the one sent to my home, to my arms into my world has been sent not just for me to parent but for me to learn from, for me to share, for me to accept. Sh%T. This isn't about me, its about her and her story and how He is using her for good, for education, for understanding and for a change in the future.

There are days when I just don't think I can do it. There are days when the "easy" life I once had before raising a disabled child flash into my mind and I wish I was living those moments again but then I remember, I am a better person than I once was, I like who I am better now than the person I was before my daughter was placed in my arms and I am just here to hold her hand, to guide her and allow her story to unfold, you see, its not about me, its about her and if we follow her lead, I am certain that we will see many fruits of the labors that we invest in her life.

Square Hole In Round Peg

I don't fit. Yup, its me. Not my beautiful child with autism spectrum disorder. Why don't I fit? Its simple. I want everyo...