Reach for the light

Community.

This thing we build on love, on mutual understanding, on acceptance, on camaraderie, and on empathy birthed from hardships.

Life is so breathtakingly beautiful. And in its beauty, it can also be very hard at times.

Life’s about holding the light for one another.

It’s about clinging to hope and faith.

It’s about clinging to love.

And it’s about reaching out our hands and uniting.

This is how strangers become friends, and this is how we remember we are never, ever alone.

Reach for the light.

My dear autism and special needs parents

My dear autism and special needs parents:

On the days you feel your worst,

remember that you are beautiful

On the days you feel like you don’t know what you’re doing, know that you are brilliant

On the days you feel exhausted and can’t go any further, look back and see how far you’ve come

On the days you feel you can’t handle another battle,

look at your scars and be proud of the ones you’ve won

On the days you feel alone, know that you never are…

Even if you don’t think you can push through, you can – one step, one breath (one coffee, one set of eye pads) at a time💙

Sleep is so often something we don’t get as autism parents. Our kiddos can have a particularly challenging time falling or staying asleep.

For a while our challenge was the staying asleep. Now it’s BOTH falling asleep and staying asleep.

I often wonder how long it takes before the human body can’t take anymore…

I wonder how long I can function on such little sleep.

I wonder how my child can have so.much.energy. without having slept.

And then from somewhere, the strength keeps coming.

Moment by moment, breath by breath, I hold on to hope.

Hope turns the impossible into possible…and sometimes that’s all we need to get us through.

Hope for this moment, hope for this day. Hold on to hope my dear friends.

To The Mom Stressed and Worried About Her Child’s Health

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Dear worried and stressed Mom,

I see you. I see you smiling and hustling and bustling through life. Going to work, working from home, in the grocery store, running the roads, the parks, stroller in toe. Happiness and laughter, but with a slight twist of hesitation. I see the shadows lurking in the corners, ready to stomp across the sunshine in your eyes. The imminent gray that grows and swells, and in a moment, will envelope your happy – if you let it.

I see you going about your day, responsibilities and regrets. Worries if you are spending enough quality time with him. Phone calls to doctors and therapists can wait – but they can’t…I see you pulled and stretched, molded and shaped in directions of choice and directions of fear. Like warm, pulled putty in a toddler’s hands, you’re thin, drooping and sagging. Good, bad, insensitive and well-meaning remarks – they all cling to you, lost in the sticky sea of your soul, they become a part of you. Don’t let them become you.

I see you late at night, wearily standing at your kitchen counter, drawing weekly meds. You wait until he sleeps, for this disease has robbed enough of your time together – you will give no more. While most have a junk drawer, yours is chock full of medical supplies and drug interaction pamphlets. I know what’s in your head – with every pull of the plunger, filling a vial higher and higher, flick of the syringe – this isn’t fair.

Doing this isn’t fair. Being here isn’t fair. This life is sometimes so unfair. So full of hurt you can’t explain unless to another who has also been there. You hurt for your child, although they know no different – you do. And you weep inside and out for what they must endure. You weep because you feel helpless, powerless and you must watch them endure.

I see the pain behind the smile. It lurks in the words of positivity you often speak. You can’t fool me. I know you. I know your scared, overflowing, joyful and broken heart. I know it has no bottom for that dear one you adore. I know it stings. I know it’s sore.

Momma, I feel you. I feel your heartaches, your nausea, your headaches, your sleepless nights, the hesitation in your step as you drag yourself forward because –  THERE. IS. NO. OTHER. WAY. I feel the desperation in your longing – the day you pray will come – when worry of health and sickness will wither away, wash away. Please – take all this away.

I hear your heart stop when the doctor enters the room with results. When a fever is never just a fever, a cough is always something more, weekly therapies, visits to specialists and the ER are your normal. I know the staggering halt that encompasses your entire being. When the world stops revolving and begins spinning, spinning, spinning, out of your control. I know you want to make it stop.

I smell the sweet victory when you can overcome that fear – fight the foe with all that is in you, and then nestle tightly in the quiet moments where the intoxicating scent of your child’s head, the stroke of your finger along his soft and fleshy cheek, holding tiny feet in the palm of your hand, is the elixir of all that is right, and good enough, to always bring you back. Back to carefree, worry-free, stress-free. Even if only for a little while.

I see you there. Soaking in every. precious. moment. Because we know too well, Momma, another one of these is never guaranteed.

I see you playing with him, chasing, tickling, giggling, loving. Wholehearted love. Fierce love. Love that defies anything this messed up earth could bring. A love that fights, hopes, and a love that stings like no other when you find you are helpless to the illnesses and diseases beyond your control.

I see you struggling to keep it all together, Momma. Fighting back the tears, the lump that grows in your throat that you never let out – can’t let out – are afraid to let out. I see you change the station because you simply cannot listen to “that” song – not today, not now. Maybe not ever. I see you congratulate a new mom, and I also see you cry in secret as the pain of your own losses, missed opportunities and anger over a cruel disease, overtake you. I know the guilt you will feel – for everything. For being too much, too little, not enough, wanting more, having more than you believe you deserve. For wishing your child never had to endure life living this fear. That you, wouldn’t have to live this fear.

I know that sometimes when you cry it comes out of your eyes, but sometimes, many times, it just stays in your soul.

I see you strong, Momma. I see you now. I’ve seen you in the past and I know I will see you again. Please listen to me. Read my words. Take my words. You are stronger than you know. You have more fire and feist than a pen of wild bulls, because this is your baby – your heart, your soul. When you feel weak and fragile, like you can’t even make it to your pillow – trust. With all that is in you, trust, and keep your faith close. Power comes in times like these. Strength comes in times like these – where in that brave, costly, intentional action of the heart, pure love wholly lives.

I know you, Momma. I hear you and I see you, and we never need words to speak what we know of each other in our hearts. Your worry is my worry. Your fear is my fear. My strength is your strength – so take it. When you are running low and weary from the fight, press on. When your chest is heavy and you can’t breathe, see the beauty in front of you, pour your heart into the joy that is before you. Hold that baby tight and carry him through…and I will carry you.

Peace be still, Momma. Peace be still.

Purpose

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I think a lot about my purpose now. It was somewhat clear before, but not as deep. Important, but not nearly as moving. I was a wife, engaged in and climbing my way in a demanding, full-time career. I was a loyal friend, family member and volunteer. I was balancing it all nicely – squeezing in everything I needed to do along with everything I wanted to personally achieve. In retrospect, my stress was low – after what I have now experienced and continue to face.

When Luke was diagnosed with a congenital heart defect, my thoughts and emotions shifted. Once he was born, my entire purpose shifted. My world was gone. Laurel was gone. Everything I had been working for and towards, was placed on the back burner. In one instant, all those things were gone. My purpose transformed to heart and drug researcher, sacrificial mother, and fighter.

And now? Where am I after most of the dust has settled? Who am I? What will I do with what I have learned – am learning – from this beautiful and scary journey?

My brain is the same – it desires inquiry, craves to-do lists and work, fulfillment, challenge, and success.

My perspective is changed – it is rare – I am quicker to judge in some ways and I am more accepting in most. I do not tolerate BS – at all. I don’t care about most trivial things.

My eyes are more clear – seeing into hearts, seeing pain, strugglers alongside me, individuals fighting battles each day. I see what matters – joy, hope, heartache, love, faith, and miracles.

Then there’s my heart…my heart is so not the same. In some ways it is blacker, it has been broken and pieced back together, stronger than it ever was before. It has been shocked, tormented, tangled and tested, and has been made more aware. It has been tuned in to the good stuff in this life – the magic, the miracles – that life can bring. It feels the pain of others more tenderly and most often doesn’t have need for words. It craves the beauty that my son brings to my life.

And so now, still enmeshed in this medical journey, I think “What’s next for me?” How does a 39-year-old mother progress after, and while going through, what is a transformation of my very core? What do the next years mean for me? Where should my personal path take me?

My first desire and thought each morning before my feet even hit the floor is to be the most engaged and loving momma to my precious boy and to show my husband how much I love him. In spite of all the demands that challenge and test us, these two beings are my world, my everything. Most days this is simple – those are my goals. Then I ponder the bigger picture – how will I use my journey? What purpose, aside from my own lessons, can be gained and given to others. I am traveling this road, I have to do something with it.

I hope that I live my life as example of faith, joy, love, and determination, but I feel at times it is not enough. And so I turn to writing this blog to sort out the thoughts and make sense of the experiences and lessons learned. I am reminded that this journey really isn’t about me, nor is it about Luke. It is about what HE is doing in our lives – the testimony God began in our story and the ribbons of hope He is weaving throughout our journey of faith.

Purpose – for now mine is to give encouragement, perhaps change the heart of someone sharing a similar journey. To be an example of dwelling in the precious moments with your babies, holding their cheeks softly to yours, looking closely at their little profiles and wide eyes as they discover the world around them, and embrace their magic. To recognize that there are strugglers all around you – fighting things you cannot see, or imagine – you may even be one of them. Take to heart that you cannot ever plan for what is to come, and one day you may be that struggling soul, so you soak up today and all of its blessings.

You find your purpose where the tethers of this mortal life no longer bind you and your heart is free to take shape and soar with compassion and love and wherein His grace, is always enough.