This morning at church I saw a tiny little baby not even two weeks old whom my daughter was holding. And as I stood there looking at his little bitty fingers and perfectly content, sleeping face, I thought back to the days when my four were so small. Those memories are embedded in my heart yet I have forgotten so many details. What I do remember, what my mind will never forget, is the excitement of having four children five and under. Our family was complete. We had the perfect number of children, just as we had planned. And they were healthy with all their fingers and toes, eyesight and hearing. The sweet baby in my daughter’s arms made me think back to the old me who had no idea what was coming when Ryan was just a tiny little two week old baby. Of the heartache surprising me so soon after his birth. The first recognition of seizures when he was just four months old sitting in the exersaucer that held all four children. I still remember exactly where he was when I realized something was terribly wrong. It was dinner time with the older three kids and Travis gathered around the table. I looked at Ryan then timidly told Travis to look at him because I thought he was having a seizure. Sweet Travis tried to down play my fear, yet reality took hold. Seizures were indeed taking residence in Ryan’s four month old brain. And now over the span of the past twelve years as I look at the dashes that have marked major events in his life, I sit and wonder how we have survived. How does any parent of a special need child survive? Those little babies so perfect and compact and sweet produce such joy and heartache all in one breath. To say I never saw it coming is an understatement. To say my heart has broken in a million pieces over the years is nothing short of the truth. To say I have experienced a fight like no other is my reality.
Yet here I sit wavering between hope and despair. Here I tend to my broken heart realizing my sweet little boy is slipping away just a little bit more. My grasp on him a little bit looser than just a few months ago. As I fight for what once was, I know it will never again be. What I hope for in my mind is but a mirage of health he will never regain. What I find in my dreams is a yearning for giggles, I love yous and begging for a second helping of ice cream. And I know those dreams, those yearnings, those hopes will never come to fruition. Every day is a battle between chronic grief and accepting reality. And when I get comfortable, when I enjoy stability and feel excited at weeks on end of normalcy, it all gets yanked out from under me. My mind forgets about the decline, disengages from past losses. It is protection and survival. For years it was intermittent seizures and loads of behavioral issues like head banging and helmets and not being able to exist in public. Then it was increasing developmental delays and more frequent seizures. Then it was two years of brain surgeries and tests and med changes. Then came tummy issues and more surgeries and palliative care. The words were silenced, the running through the house was no more, the smiles began to fade away, the sleeping increased. The rampant seizures continued and the body began to weaken. My sweet boy, my precious son, my last born . Oh how the grief of loss has overcome a weary soul. As love remains the driving force of fighting for more time, the reality of slipping away is constant.
The cycle of emotions runs congruent to the ticking of the clock. As days turn into weeks and weeks turn into months, the slipping away becomes more noticeable, more real. Yet with every change, with every loss, there are no regrets. How could we love him more? How could we not keep fighting? How could we not muster the strength to do the next thing? It is in the daily care, in the heaving lifting of a body that cannot stand on its own, in the ritual of morning and nightly medications and feedings. Serving Ryan is a privilege. It is a treasured gift sometimes wrought with weariness and fatigue, but a treasure no doubt.
There are moments I beg God to take Ryan home, to free him from the earthly bounds of seizures and medications and tube feedings and constant sleeping and being caught in a body that betrays him daily. Days I say enough is enough. Even when I do not want him to go, I want him to be free. Just how much can one little boy endure? But then I stop. I stop to remember He does not make mistakes. Though Ryan’s body is severed and broken and fading, the Lord is doing a mighty work through him. I know this to be true in the deepest corners of my soul. I am confident of this and only this – God is capable of taking a broken little boy and turning him into a vessel of His mighty work. Much like the wind rustling through the trees, God’s power in Ryan’s life is not seen by the human eye, but it is felt in the hearts of those who choose to see the beauty of one life touching another. It is in the believing, in the trusting, in the faithfulness of two parents just doing what has to be done that the Lord is honored. I cannot speculate on what the future holds. I cannot question why the hand of God has given us a broken body to love. I can only believe Travis and I are the humbled ones continuing to do what God has called us to while trusting His hand is leading where we should go. Whatever tomorrow holds, wherever the road leads, however bad Ryan’s health gets, one thing I know to be true. God will carry us through, give us strength to fight the battle and continue His perfect plan for our lives – for Ryan’s life.
As the body weakens and the walking has ceased, as we must carry him from car to the house, from bed to the bath, from couch to the next thing, fear is present. As we navigate the changes needed to our home, as we consider next steps, grief has entered our home. It is in the hot tears, in the sorrow of continued loss, in the sadness of a life slipping away that we search for strength to continue on. My heart is heavy, my tears are abundant, my sorrow overwhelming, yet my faith is strong. I do not know how to do this. I am weary of the loss. I want to go back to stronger days. The door to yesterday has closed, and the door to tomorrow has not yet opened. So today, this beautiful place where time stands still in the moments of the present, I fight for strength. I fight for peace. I fight to believe in God’s goodness and in His faithfulness to provide.
We all have a cross to bear. We all carry on in weariness, fighting for strength. We all do the next thing as we battle faith over fear. In the moments of uncertainty, in the loneliness of the battle, we all have the same choice. The choice is simple – trust God or trust the unknown. While faith in Christ does not remove sorrow, while it does not erase pain, while it does not diminish trials, faith does produce hope. Hope for an eternity full of riches and glory and healing. Hope for joy to show up just as the sun rises each morning. Hope for God to meet our every need and be our strength.