I have been mothering for Thirteen almost Fourteen years now. Tommy came along and has brought great challenge and learning to our family and my mothering. He was born with a genetic disease called Russell Silver's Syndrome. Several years ago I found myself in fetal position on the floor tears flowing for hours. I did not know how to do this- There was no manual for navigating (at the time) No-one understood or could help me with this tiny little boy that was not growing. Navigating the health doctor's, school, disability needs, relationships all alone had run my normally outgoing self to a weak, depleted puddle on the floor. Crushed- weak- alone- exhausted.
There I was alone, fearful, exhausted, and wandering "Does anyone understand this pain".......
A familiar Psalm came to me in this state, I grabbed my bible and asked Jesus to touch my broken heart. Mom's of these wonderful children with unique challenges that come with rare disease and the many syndromes have a custom made journey. It is isolating, hard, unique, completely different mothering adventure. (my oldest is 13, our middle is 12, and Tommy is 7)
Later in the day- A renegade special needs mom came along to dust me off- Understanding the pain
Within a week another renegade mom hand wrote me a letter that sits in my bible for bad days. It is the only hand written letter I have gotten in 7 years. She too understands the hard days. We need one another in life and on our journey. The shared life reminds of his life and the hope we have in him. Personal- Love extended- Real- Painful- and Sacrifice. My very personal relationship with Jesus and the one's called to help me in hard hours give me hope that we can win the fight and he is with us. He knows what we need and if we open our hearts to him- He knows and understands- and there are others to life our arms and cheer us on.
In our pain:
Psalm 73:16
But when I considered how to understand this, it was too great an effort for me and too painful
Psalm 147:3
He heals the brokenhearted and binds up their wounds [curing their pains and their sorrows].
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