Hold On Tight
If I could go back in time to those days before his birth, and have a chat with my pregnant self, I would tell myself this about the parenting journey I was bound for…
Written by BreAnn Tassone
If I could go back in time to those days before his birth, and have a chat with my pregnant self, I would tell myself this about the parenting journey I was bound for:
It will be different than what you are imagining.
You will know, but not quite understand, the moment that you lock eyes that first day.
You will also instantly know that you are his person.
You are strong enough to rise to the occasion.
You were meant for it, and you’ve got this.
God will lead you. Hold on to Him tightly.
Stop yourself the very first time you read what other babies his age are doing and your stomach drops, because he isn’t doing it yet. Just rock in that glider and stare into those beautiful brown eyes.
If you google that missed milestone one time or a million times, and get lost in your mind with worry, that will do nothing to change the outcome. Instead look at how intently he is listening to your voice as you read Goodnight Moon in his sailboat nursery. The worry is useless, and the outcome is not anything to fear.
When he begins to roll his toy cars in such a way that you feel it is less play and more some type of visual stim, a word you won’t learn for a few years yet, think about how happy he looks. Make note of these things, but don’t fret. Instead, choose to enjoy the smile on his sweet little toddler face.
When you notice incredible skills happening far too soon in comparison to others, just marvel in it. Don’t read every article written about it, wondering why or what it means that he can do it. Your nights will be far better off spent sleeping while you still can.
At a certain point there will be no sleep, so grab every wink.
When the sleep gets hard, you will manage.
In case you already forgot number 4, you are strong and capable.
Your child is also strong and unimaginably capable. Perhaps the strongest, most resilient person you’ve ever known. You’ll see.
When he struggles to sit quietly on the mat at library story time, just go to the park instead.
When he runs from you and others say things like, “He’ll come back, just call his name.”, trust your gut and RUN. He’s not coming back.
Start looking for the angels sent to meet him on his path. They are truly everywhere you turn. You will be amazed. He will recognize them right away.
You will see him form the most enduring bonds with these people.
Don’t waste a moment’s thought on those not meant for him. He will recognize them, too.
He will have some difficulties, yes. Who among us is granted a life without them? Focus on the many triumphs instead.
He will be completely misunderstood, as will you. Ignore this. Make no apologies and overlook the judgement of others. Live these days focused on the audience of your one heavenly Father.
He will also be completely embraced and accepted. It will bring glee and immense gratitude to your heart each time.
You. Will. Be. Enough. Don’t question that fact, but know that your faith, family and dear friends will also carry you when you need them.
Begin this prayer immediately. Pray for God to lead you. Tell Him that you’re listening and ready to follow his plans for your little boy.
Walk next to your son, hand in hand, through it all.
You’ll learn soon that he’s come here to teach others things like compassion and empathy and humanity. He’ll teach them some about fonts and logos, as well, but that won’t make sense to you for a couple of years.
Your baby is perfect. One day when he is 8, he will look into your eyes and plain as day, give you every answer you’ve been searching for. His self-awareness and self-acceptance will put your mind at ease in an instant and bring a calm to what at times will feel stormy. It will be one of those beautiful moments in life that you want to capture, that you want to freeze inside of.
Always remember that this is his life to live. He was sent here with a unique purpose just as you were. Remind yourself of that in the times when you feel like you must find all of the answers.
You will grow through this time. Your heart will grow. Your empathy will grow. Your heart’s desire to help other children will grow even bigger than it already was, and now with an entirely different level of understanding.
Lastly, it will all be okay. I promise. It will be better than okay. His life will be amazing and full and happy and fun and he will know the abundant love of his adoring Mother.
Written by BreAnn Tassone
BreAnn is a wife and mother to two beloved children. Her 8 year old son is twice exceptional and has been diagnosed with PANS/PANDAS, and her 3 year old daughter is his most incredible advocate. They both bring joy to this world in their own individual ways. BreAnn lives with her family in central Virginia. She is a former Special Education teacher and serves as a volunteer at her church within the special needs ministry. She is a homeschooler and coordinates groups and events within her community to support the childhood experience of her neighbors and friends. It is her conviction that all children benefit when all children are included, accepted and can live this life learning from and supporting each other.
Stages In The Parenting Journey Part 1
In 11 days from when I’m writing this, our family is scheduled to launch out on an epic adventure. A 9 to 10 month cross-country RV trip. As I reflect on how this epic adventure came about, I see a great similarity in this actual trip and the process parents of kids with special needs go through in their journey. There are stages in both journeys and they parallel.
Written by Sarah McGuire
Written by Sarah McGuire
In 11 days from when I’m writing this, our family is scheduled to launch out on an epic adventure. A 9 to 10 month cross-country RV trip. We are getting final details in place – paperless billing, homeschool supplies set, wardrobes minimized, sizes updated (growing boys – sheesh, all the fall clothes are too small), and so much more.
As I reflect on how this epic adventure came about, I see a great similarity in this actual trip and the process parents of kids with special needs go through in their journey. There are stages in both journeys and they parallel.
I’ve been asked repeatedly if this was something we’ve always wanted to do, planned to do, saved money to do. Uhhh, no. Personally, I always thought it would be amazing and cool, but thought it would never be possible for us because of the expense and upkeep of having a house while also getting an RV and leaving for months on end. And then…
Stage 1 – Shattered Hopes.
We learned our house had mold. Our dream house. The prettiest two acres you’ve ever seen bordered by pine trees giving it privacy, a lovely pond that gives my child, who is allergic to chlorine, a place to swim to his heart’s content, grandma and grandpa next door to love on my boys and for my boys to help them with projects, the most efficiently designed 4 bedroom house with large rooms and double closets I’ve ever laid on eyes with a dream kitchen and custom cabinets, a lovely workshop out back for Jonathan. Organic fruit trees, berries, and my favorite flowers dotted throughout the property. And oh the gorgeous welcome of the tree-lined drive that flowers deep pink in spring. But, I have been struggling with health issues for several years and no doctors were able to figure out what was wrong or how to help me feel better. Through a process of elimination and investigation we learned…mold. In our home and in our church, which doubles as our homeschool co-op building. The two places I spent nearly all of my time. I had become so incredibly sensitive to mold that in order to heal, even after fixing moisture issues and remediating, we knew we’d have to move. No more dream home and property, no more homeschool co-op, no more involvement with our church family at the church building. Crushed plans. Shattered hopes. Loss.
Does that sound familiar to your special needs journey?
When you were pregnant, so many hopes and dreams and plans for who your child might grow up to be. A sweet little girl with silky brown curls and a love of… maybe horses? Maybe rainbows? Maybe a math whiz? Or a bookworm? Who grows to be a teacher, doctor, accountant? Dad walking her down the aisle in her dream wedding dress. A delightful little boy with freckles who scares his sister with surprise frogs, plays fetch with the dog, collects rocks, and delights in watching the garbage truck on Tuesdays. A track runner? A football linebacker? A robotics champion? The possibilities fill your head with dreams and possibilities…but then a vacant stare, not responding to his name, her ultrasound shows an abnormality, a seizure, lost words, flapping hands, a NICU stay – for months, surgeries. A diagnosis.
Life as you dreamed, hoped and planned will never be the same, will never happen. Life will be forever altered. You are crushed. Your dreams are shattered. Your heart is broken. What was will never be again. And what is ahead, you do not know other than that it will be hard.
At this point, you may jump right into action mode, might bury your head in denial (that may be okay, temporarily, it is part of the grief process after all), might get angry – at God, doctors, your spouse, yourself, or just life in general. You and your spouse may react in opposite ways. It’s not uncommon for the wife to jump straight into research while the husband defaults into denial and anger.
Just as we didn’t stay in the stage of Shattered Hopes when we found out that we had to move out of our dream home and leave our church family, this stage is not the end-all be-all in our journey as parents of children impacted by disabilities and special needs. In the upcoming weeks, I will continue to share how our rv adventure compares to our special needs journey and look more closely at the stages that many of us go through.
Written by Sarah McGuire
