On a day past where only memories remain, I saw a picture that seared my heart in two. A young girl laid in a hospital bed with her eyes closed. She was nearing death just waiting for Jesus to come take her home. And to her side with her arms wrapped around her precious daughter was the mom. She had her eyes closed as well, the tip of her nose touching her daughter’s head with her lips pressed together in a tender kiss just above the girl’s ear. As tears welled up in my eyes, I thought to myself, “How does she do it? This poor mom is about to release her daughter to the heavens.” The picture was beautiful and sad and touching and dramatic all at once. I simply could not comprehend lying in a bed just waiting and watching for my child to pass away. To know the fight is over. To hear the last breath of one whom I gave birth to. To see the body go limp and lifeless.

Breath escaped me as my biggest fear is losing one of my children. Yet if I am honest, if I really bare my soul, if I share the truth that sometimes dwells in my mind, I have to say I have wished and prayed for Jesus to come sweep Ryan up and take him home. I have wished for a release from the seizures and other diagnoses that weaken his body and steal his independence and ability to enjoy life. I do not wish these thoughts on anyone, but I sometimes wish them for my son. I wish them because as I seek a selfless heart and deep desire for his freedom from the earthly chains of special needs and medical problems more than I desire to keep him here in those chains. It is not every day those wishes come to my mind, but they do come just as the seasons change the beauty in which we live and breathe and live life. And as the floodgate opens and the guilt for such negative thoughts rushes over me, I pray for strength to get through another day.

You see, it is not my boy who needs the release from the chains. No, it is me who needs release from the fatigue and fighting. It is me who needs a break from the constant battle. It is me who gets weary from the daily grind of medications, formula, feeding pump, diapers, bathing, cathing, dressing, lifting, watching for seizures in the attempt to keep him safe. The exhaustion overtakes me. And often it is not the physical exhaustion that breaks my spirit and steals my joy. It is the emotional fatigue of always being on guard. It is the mental fight to stay positive and look at the good. It is the constant work required to manage the boy and all his needs.

So last night as I crushed medications, mixed formula and water, prepped the feeding tube and pump, prepared to cath and laid out the waterproof pads on his bed, I stopped and looked around his room. I saw supplies and equipment everywhere. I noticed the tape and the creams and the wipes and the bandages and the opened closet filled to the brim with diapers and even more supplies stacked up to the ceiling. I exhaled a big breath and realized it will not end. The constant worry. The endless fighting for health. The unstoppable mental fog. It never ends. There is no break. There is no turning it off for a day.

And before me is my precious little who never grows up. Even as his body lengthens and his voice deepens, he simply does not change. He is still as needy as in the passing years from long ago. He still wears the diaper. His body is weak. His balance unreliable. His feeding pump waits to be filled every night. He needs to be bathed, and his teeth brushed. The boy who cannot speak is the one who never leaves a word for me to digest. Oh if he could just talk to fill the quiet lingering in the walls of our home.

My heart can grow weary from the fighting. The scratches on my arms show the daily battle. I thought it would get easier but it has not. Sometimes I want to stop. I seek reprieve from the work of caring for a child who can do nothing on his own. Sometimes I want a break from the heavy, time consuming routine. It is terrible to admit I get tired of it all, that I sometimes wish I could just say “go get ready for bed”. But God gave me this needy child, and I have to make the best of it. Yes I love him. Yes I am thrilled I get to be him mom. But some days….some days are just so hard. Some days I wish for an easier way. Some days I dream of what he would be like if he were a typical 20 year old. Some days my heart hurts so badly I can barely stand the ache. Some days the sorrow overwhelms this tired momma’s heart. But all the days of hard do not overshadow the blessing my sweet boy brings to my life. I have no answers as to why I have to work so hard to meet my boy’s needs. I only know God gives me the strength to do it, to put one foot in front of the other and keep my head up. And then I see the sweet smile spread across his face. I see the love in his eyes when I tuck him into bed. I feel his hand grab mine. It is in those precious moments of quiet when I know he sees me. When I know he appreciates my tired efforts to keep him safe and happy and fed and comfortable.

Some days it is hard to stay positive and run from the pit of self pity. Most days I can overcome the negativity. But days creep in when I wish to go back, to keep home the ones who gave conversation and relationship in a way my Ryan never has and never will. Because that is what I love so much about parenting – the connection and conversation. Parenting Ryan is the lonely path of giving without getting much in return. It is service and selfless sacrifice. It is forgoing my wants and dreams to manage his health. It is sitting at home in the quiet when I want nothing more than to meet friends, make last minute plans. It is knowing the obstacles to make those experiences happen. Parenting a child with special needs is a lonely path sometimes. But it is a path I would not give up for anything else in the world. He is a blessing, and even on these days when it feels like treading through the mud, I know God has a plan. I know He gives me the strength I need to get through the next thing. I know there is a bigger plan, a wider picture than the lens my perspective can see. So I continue to trust the One who gave me this broken, precious boy. Tomorrow may be better. It may be worse. Regardless, it will be filled with love and grace and a commitment to care for the one who needs me always.