For much of my son’s nearly 16-year lifespan, I have begged for miracles. Many I have received, and countless have always been - though I took them for granted. His struggles often help me to see how miraculous the human body is and how amazing our God is Who created it. At times though, I long for him to know health and wholeness – to be free. I long to hear spoken words come out of his mouth, to see him intersect and play with cousins and peers, instead of lingering nearby or in the background of joyful nieces’ and nephews’ playtime.
There were moments that he tried. I recall them vividly. He would chase after a group of little people running around during Sunday Coffee Hour. But he could never keep up. When a kind, fellow parent tried to help the children include him by instructing them to slow down or stop, Michael would halt and not seem to know what to do next. He wanted to join their giggling fun, but he didn’t quite know what to do once they let him in. Another time, he chased after a little guy running the hallways before a group therapy session for children with developmental delays. Up they went, down they went – Michael huffing and puffing and never being able to even remotely catch up to him. The little guy was similarly instructed by his mom to slow down and play with Michael, but somehow Michael sensed things weren’t quite real. He stopped running. He gave up trying. It was just too hard to play.
My heart continues to break when he rejects opportunities to engage with other young people. These are the miracles I pray for: relational connections, friendships, and speech. Not to mention the health miracles for his much afflicted body.
I am grateful for his increasing happiness and health, and I cherish the playful moments he has with us, and with his grandparents– even if they do not look like the ones I want him to have. I believe it is a normal and basic instinct to crave wholeness for our loved ones. We never want them to be sick or their lives to be compromised or difficult. This is how it could have been if humanity never fell. I could spend my energy lashing out at Adam and Eve and ruing our fallen lot, or I could place my trust in the Perfect, Whole, Limitless One who came, and became, limited and afflicted – “a man of sorrows acquainted with grief” (Isaiah 53:3). I am in a space where I am choosing trust more often than I used to, since the time of Michael’s pain-laden birth.
Today in hearing the prayers of the Blessing of the Waters I was struck and comforted by the prophecies of Isaiah 35:1-10 therein. I hope they will comfort my fellow special need strugglers also.
The wilderness and the wasteland shall be glad for them,
And the desert shall rejoice and blossom as the rose;
It shall blossom abundantly and rejoice,
Even with joy and singing.
The glory of Lebanon shall be given to it,
The excellence of Carmel and Sharon.
They shall see the glory of the Lord,
The excellency of our God.
Strengthen the weak hands,
And make firm the feeble knees.
Say to those who are fearful-hearted,
“Be strong, do not fear!
Behold, your God will come with vengeance,
With the recompense of God;
He will come and save you.”
Then the eyes of the blind shall be opened,
And the ears of the deaf shall be unstopped.
Then the lame shall leap like a deer,
And the tongue of the dumb sing.
For waters shall burst forth in the wilderness,
And streams in the desert…
A highway shall be there, and a road,
And it shall be called the Highway of Holiness.
The unclean shall not pass over it,
But it shall be for others.
Whoever walks the road, although a fool,
Shall not go astray…
But the redeemed shall walk there,
And the ransomed of the Lord shall return,
And come to Zion with singing,
With everlasting joy on their heads.
They shall obtain joy and gladness,
And sorrow and sighing shall flee away.
I don’t feel that I’m “giving up” by accepting that Michael’s body may never be made whole in this lifetime - because I am choosing to trust that God will restore him. It may not be the schedule I would choose, but our dear Lord, so humble and good, surely knows better than I when the right time is for Michael’s healing. It may be that he must wait to pass “somewhere over the rainbow” before he can run free and fast, and sing with intelligible words. It may be that I must strive harder to be able to join him there some day so that I will be able to embrace the long-awaited joy of knowing that he feels good and is completely understood. It may be that tomorrow I revert back to a place of wishing for more for him and us, now in this life. But, on this blessed day, I echo the words of Patriarch Sophronios of Jerusalem’s priestly prayer for Theophany,
“Today, the streams of Jordan are changed into healing by the presence of the Lord. Today (I) have been delivered from the ancient grief. Today the gloomy fog of the world is cleansed by the manifestation of our God.”
Today I place my son in our Savior’s blessed hands, and cautiously but hopefully I trust that Michael’s “Today” is written by the Author of his life.
Presvytera Melanie DiStefano is the Resource Coordinator for the GOA Center for Family Care.