Presvytera Melanie DiStefano lives with her husband Rev Fr Joseph DiStefano and their son Michael Seraphim. Together they serve the parish of St Nicholas Greek Orthodox Church in Youngstown, Ohio. Melanie has a background in Chemical Engineering and graduated from Holy Cross Greek Orthodox School of Theology with a Masters of Divinity in 2003.
A year ago we “lost” our second baby – in the womb. “She” (we believe the baby was a girl) was with me physically for 2 ½ months. I didn’t fully appreciate the miracle she was then, and it is only now that she is somewhere else that I long to be able to touch her by touching my belly; I mourn the fact that I will not know what it feels like to hold her in my arms. Now I can only wait with hopes to meet her someday in heaven. I am happy she is with our beautiful Lord Jesus, for truly there is nowhere or nothing better than to be with Him. I am so grateful that she never knew suffering or pain and entered straight into heavenly bliss. How we all long for this and she is experiencing it fully!
Michael knew and continues to know suffering – more than most people ever will or do. He has endured so much to be here on this earth. I am so very grateful he is here – sorry beyond description that he has suffered so very much; but forever grateful that God spared his life and has allowed me these 11 ½ years to hold him, love him, look into the vast sea of his beautiful eyes every day.
Losing Anna has made me take stock of what is before me: what I HAVE. My blessings. I don’t want to live another day not appreciating the people in my life, not really being with them – sharing moments with them. It has made me – even when I don’t feel like it – try to connect with my Autistic child. All it takes is a little effort…a bit more than with a typical child, but not so much really. I just repeat his favorite Thomas the Train sayings, pretend to be Gordon, Percy, Edward, or Sir Topham Hat. I only need sing a little nursery rhyme, hold his hands and dance side to side as he does, tickle and kiss him and rough-house a bit…. act a little silly. These are the ways Michael connects with us…these things bring eye contact, smiles, laughter. They may not be MY favorite things to do (the repetitive talking train part), but the end result is so worth the extra effort. My child looks into my eyes with love and joy. He laughs, he connects. He touches my face and cups his little hands around my cheeks and gives me a kiss. He touches my hair. I have never known such pure love.
Being a mom to a child with special needs has challenges for sure. Some days I feel so different – so very unlike the rest of the families I see around me. Some days I long to have a conversation with my child…one I doubt will ever come, at least in this life….At least with words as we know them. Some days I just want to be “normal” – whatever that is. Normal – as in getting consistent sleep, being able to potty train my child, not having to give him such a limited diet so that we have to pack food and schedule outings around every meal. Normal – as in watching my little boy play a sport or go out to play with a friend, or my dream above all dreams: to serve with his father in the altar…
But then, a loss comes. Pain snaps me back into a state of “realness” – into a sobriety of sorts. My eyes are opened to Truth. Truth is that “normal” can be over-rated. Truth is that I wouldn’t appreciate “normal” if it was all I had. Truth is that I am blessed beyond belief. I have a loving husband and family, a beautiful supportive church community, access to the best medical and behavioral resources for my child, friends that warm my heart, pray for me and give me strength. Truth is my Lord has never forsaken me or my family (even though I had my times of doubting His love and presence through the trials). Truth is He really does know best. I trust Him, love Him and want to glorify Him even when I don’t want to glorify Him.
And so, the message tonight for my soul is this: Dance with your child. Look into his beautiful eyes full of light and see eternity. Really FEEL his little fingers as they take yours and tuck them securely beneath his soft cheek as he drifts off to sleep. Feel the sweet, warm breath he breathes and listen to the sound it makes as he inhales and exhales. It is a miracle! Treasure the fact that at 11 ½ yrs. of age your child still happily lets you kiss him goodbye in front of the entire school when you drop him off. Treasure the fact that when you pick him up he lights up when he sees you and even begins to pick up speed as the teacher walks him down the hallway. Treasure the fact that he is content to play outside with a water hose for hours – amazed at the way the sunlight sparkles against the water droplets. Treasure the fact that he still wants to sit on your lap in church and be held by you even if his size makes that a bit awkward and silly-looking. Treasure the fact that he is happy now, healthier than ever, and that he knows he is loved. The list goes on and on…
Treasure your life. It is a gift. A beautiful, wondrous gift.
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