I live on a magical, sometimes deserted, sometimes overcrowded,
weird and happy little island. Its such a strange thing to always have one foot
in the special needs’ world and the other experiencing what is best described
as “typical or traditional” parenting.
As our journey as unfolded we were determined to help
Lindsey be her best and not let any opportunity to pass us by. Much of our time
has been spent helping her and watching her blossom, all while caring for,
loving and supporting our son in his childhood experience. He has had a front
row seat and has learned how to educate others, create ways to be inclusive for
those that have challenges and most importantly how to be his sisters’ best
friend. It has been said that the most magical part of a wedding isn’t watching
the bride come down the aisle, but watching the groom watch her come down the aisle.
In my case it is an obvious “awe” moment to see the accomplishments of Lindsey,
but to watch Jackson encourage her, include her, stand up for her and show
compassion and love to her friends and others that come across our path it is
uniquely amazing. I am a proud mom. This is not to say he doesn’t get in
trouble for wanting to play too many video games or for not finishing his
homework. He certainly knows how to be a perfectly imperfect 11-year-old boy.
But he is growing into a wonderful human and while I know he may have made some
compromises along the way, the character he is growing will take him far in
life.
So, I balance being Jackson’s mom with being Lindsey’s
champion. This means I spend a great deal of time fighting for her medically,
academically, socially and spiritually. I shout her story and how God is using
her from the mountain tops and I see no slowing down in the future. She has
come so far; she is indeed a miracle. Remember, we were told she would never
talk again, that she would not have friends, or the ability to socialize, show
love or affection. We have watched her defy the odds and over time and through
hard work she has become a chatty, funny and smart girl! These accomplishments
mean her trajectory is bright, but we are not so naïve to believe she is at the
finish line. She still has work to do and mountains to climb. Leaving me once
more split between two worlds. In this case it isn’t parenting a neurotypical
child vs a child with special needs; it is finding my place hovering between
the parents with children severely affected and those children that are no
longer needing any services, therapies or treatments. Where do we “fit in”? We
give encouragement and hope, and we are still learning. I struggle anytime
Lindsey meets a new parent that has been inspired by her story, I worry that
she won’t make a strong enough impression or that they don’t see how far she
has journeyed and lose the fire that her experience brought them. Alternatively,
I also worry that she is too advanced for some situations and that I am doing
her an injustice by not pushing harder or searching more for the next big step.
Ultimately, I find myself on this quirky little island never
really knowing if the next boat of people to arrive will be immersing me in
middle school parenting, allowing me to be a shoulder for someone to lean on or
a tribe of love and support. Some days it is a party where everything is going
well and others it is very lonely and causes doubt. The doubt is that somehow,
I am not doing enough; enough for him, enough for her, enough in general. But
it is important that I cut myself a break, I AM doing enough because I love
them with all that I am and it is not up to me to determine either of their destinies.
God has a plan and I am simply trying and failing to be his hands and feet in
helping them become their best selves.
If you can identify with being on an island that has people
drift through but don’t fully adhere to your way of life, you are not alone. So
often we allow ourselves to believe no one fully understands or “gets it” and that
the word “overwhelmed” doesn’t come close to explaining the multitude of
worries. There are many of us and we all worry. Try to give yourself a break,
give your worries to God, let him in, let him help. You don’t have to do this
alone and it is not your job to create your child’s destiny. I hope this entry
helps you see that we are all united by our stories, our children, our
victories and our concerns. It is ok to feel down and out of sorts, none of us
have it 100% figured out.
You are welcome at my island anytime!
