(I had the amazing opportunity to speak at a luncheon for special needs moms. The following is what I spoke on. Dedicated to all of my friends I have made on this beautifully broken journey💛)
__________________________________
“Walk in hope instead of sitting in despair.” This was the phrase that kept coming to mind as I prepared to speak today.
After over 50 days inpatient with my daughter since February, I think I have sat more than I have in my entire life. It is difficult to keep physically moving when you are restricted to a hospital room 24 hrs a day. And I didnt realize the mental toll it was taking as well- all the time that I had to sit and just think and grieve and stress. And SO much time with my thoughts that I became more self aware of all of the toxic thoughts I have on a daily basis. It became consuming and now that we have been home for a couple of weeks it has been a battle for me to bounce back from it all. Weighted down by all of the negative self-talk. And once we got back home and realized we would be able to stay for longer than a couple of days, this reality also set in of loneliness, as few outside of our world understand that just because we are home, it does not mean all is fine and well. I was picking up the pieces of an extraordinarily long hospital stay and continuing to try to manage ever changing medical changes at home. And unfortunately “stable” is not something we have been able to incorporate into our vocabulary even still. And so when you take my toxic thoughts of how negative I feel about myself and combine them with the isolation I've felt, well I just haven’t been in a good place.
I wish I could stand here and tell you how good things would get from here on out. That things will get easier. That things will get more comfortable and predictable. But the reality is that we know that they likely won't. All of us sitting here today have the commonality of living a life we didn’t plan for. A life that probably shattered a lot of dreams and expectations, and has left us in pieces leaving only remnants of who we once were. We have cried more tears than we thought possible and have experienced loneliness in a way that only we can understand. A kind of silent, polite rejection kind of loneliness. No longer able to relate to the commoner, and not fully welcome to be with them either. In the presence of those who aren't in our shoes we are the most isolated because it is where we feel the most misunderstood and overlooked. And yet we spend our days yearning for more connection and love and care. Longing to be seen in a world that isn’t trying to see. Separated by a chasm created by circumstances beyond our control. We have seen the darkness and suffered the trauma. We live it. It is our norm. The stress of caregiving is more than we can bear, which is why we are left so depleted physically, mentally, and emotionally. We wake up some mornings thinking we can't. Just one. More. day. But we do because we have to. There is no out or significant respite because even a couple of hours of respite does not provide the freedom from our trauma trained brains. True rest seems unattainable and empathetic souls are few and far between that may offer any kind of emotional healing of simple presence.
But—- what if we were able to see sparks of hope and redemption from all of the heartache and exhaustion? What if our thoughts were not consumed by all of the what ifs and wishes and constant subconscious comparison to every family that seems to have the life we dreamed of? What if we were able to look up from the constant streams of disappointment and find satisfaction instead? What if we were able to live lighter, mentally freer, and find the focus to move out of the consuming thoughts that remind us how difficult life is, and moved into a healthier mindset, focused on looking for the hidden beauty in it all? I think it is attainable but only with extraordinary mental strength and focus. Only with a choice. Only with: HOPE.
But what is ‘hope,’ really? In our lives of caregiving and stressing and feeling like we are often just surviving, how can we find the motivation to hope? When all seems so very broken and we feel like we can hardly keep going, what does it look like to hope from a place deep in our souls beyond all else?
Suffer Strong, pg 211: “Unlike other finite outcomes, hope is a future promise lived out in the present. In its truest and most potent form, it cannot be conjured or willed into existence. It’s not dependent on our ability to feel it or keep it going. It, like the grace and peace coursing through us, has been there all along. Betting our lives and our hurts, our waiting and our future, on this kind of hope will never put us to shame. This is because hope is not simply a feeling projected in our own image, wrought with our imperfections and inconsistencies; rather, it is a limitless well. It is the water of life that will never run dry. It is life and light. Hope for an unknown future has always been found in a known God…Jesus. And He is worth waiting for.”
Hebrews 11:1 says, “Now faith is the assurance of things hoped for, the conviction of things not seen.”
And Romans 8:24 says, “Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience.”
And verse 28 goes on to say, “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”
Many of us have heard verse 28 quoted in many places or said as an encouragement in difficult times. In fact, it was the verse we had printed above our daughter’s isolette in the NICU after being born at 24 weeks and spending her first four months of life there. But how many times have we heard that verse and gone on with our despair and feeling completely unable to find anything good in our most dire of circumstances? We want comfort, and knowledge, and for things to go as though we think they should. Ultimately we want control. But every mother in this room knows the feeling of being completely out of control of your situation. And it is in those moments we have the choice to sit in despair, or walk in hope. We all have our own ideas and images of who we think God is and how we think he should behave. It is difficult for us to accept that God both loves us and still allows suffering in the world. But what if we have it all wrong? What if suffering is exactly what brings us closer to Him? What if suffering could actually revolve around experiencing the heart of Jesus? And faith really is the conviction of things not seen, and in order to have faith we have to hope in the things that we cannot see? The things we cannot control? Hoping is having faith that God will truly work all things for good according to his purpose. And hoping is having faith that the good things may not be the things we wanted most, but maybe those are the things we needed most.
After over 50 days in the hospital with my daughter and over 5 different admissions since February, I found myself in a place of darkness like one I had never known. And as someone who has suffered most of their life with clinical depression, that is saying something. I began questioning my faith and everything I had believed in, figuratively feeling as though I had been beaten and bruised beyond healing, unable to stand on my own. I kept picturing myself lying face up on the ground, beaten and defeated. I saw myself lying there waiting for something to give me motivation and strength to just get up again. And to be completely honest, it took me a lot longer than I would like to admit, to just sit up again, much less stand.
Many of us have children who don’t even have the physical ability to walk, some of them reliant on us for all physical needs. What if it wasn’t so much about what we lost when we began our lives caretaking for a child with significant needs, but more about gaining the opportunity to learn a deeper way of life in suffering well, and finding a strength we didn’t know existed in our souls? And what if it wasn’t about the daily pain of isolation and feeling forgotten, or the constant fighting and advocating for human rights? But what if instead it was about a chance to display to the world what it means to die to yourself and exemplify true love in the selfless serving of another human being? Because isn't that what the world needs more of anyway? More people who just love people? More examples of how to truly care for another being? What if it has all been more about gaining something than what we have lost? What if it all could be…..good?
They say you lose yourself in motherhood. But what if that isn’t a bad thing? What if our incredibly challenging traumatic motherhood experiences have changed us into a person we no longer recognize…but for the better? Stronger, more resilient, empathetic, and with a fight that just won't quit?
I follow a blog of a fellow complex needs mom called Mothering Rare. She posted something a year ago that was a nugget of truth that has really stuck with me and helped me to retrain my thinking. She says, “What if we changed our view of motherhood from losing ourselves, to recreating ourselves?” She goes on to say, “All jokes aside, this mom gig is not for the faint of heart. However, if you allow it, it can change you into the best version of yourself. It has the power to transform, shape, shift, recreate, and change who you are for the better. Your heart and perspective expand by a magnitude you could have never dreamed even existed. Your life is enriched with some of the most valuable lessons you will ever know. Instead of looking for the ‘old you,’ embrace the hard, fun, messy, beautiful, exhausting, life giving, chaotic, joyful, and ever changing life of motherhood. Because that is where you will find yourself.”
We can become so blinded by grieving all that we lost that it leaves us missing what we gained. The death of dreams brought life in ways we could have never gained otherwise. We have actually been given the gift of an opportunity to see what we are really made of, and as we have been pruned and beaten beyond what we thought we could handle - yet we all still got up this morning for another day.
*A day we know is likely not to be much easier than the one before, but we woke up and sat up and stood up out of bed because the place we have found to pull strength from is far greater than one we could have ever manufactured without the death of what we used to refer to as ourselves.*
Our stories of love and strength and suffering have the ability to wake up a world of comfort-seeking people and give them glimpses of the goodness that can exist from the pain. A beauty so unexpected that comes from SO many ashes. It is a kind of beauty that cannot be known withOUT the ashes. We do not exist to merely inspire and to be gazed upon as an uplifting story that passes in the wind. We are world changers. We have been given a gift and a platform and a voice. But it is up to us as to whether or not we choose to use it to it’s full potential. Our cries are loud, but our strength is louder. Our pain is audible, but our passion and fight can be roaring. We can choose what people hear and see the most. And unfortunately either way it will likely not instantly bring people to want to be present in our story. But the more of us that are living into our beauty rather than just sitting in the ashes the more the world will take notice. The more the world sees US hope and continue to have contagious faith, the more convinced they will become of their need to see. To be present. And to love well.
On our hardest days when we feel beyond depleted, there is hope. And many times it will feel like it is all we have left. But if we believe and hope that there is something growing from our pain and suffering that is worth living into, we can make it another day. And we can call it good.
Comments