Joe has fewer "issues" then other kids with brain damage to the extent of his, but we still live our lives in a flux state that has to allow for what happened this morning.
I'm going to spare you the details, but here's what's good for folks without special needs in their homes to know: We parents with these extraordinary kiddos never get to turn off.
Remember when you had a toddler or two? Remember how you always had to have an ear and an eye cocked in order to know what exactly they were doing at all times? This is the unrelenting reality of the parent of a child with special needs. There is no "off".
I won't drag you into a pity party because Joe is now 9 and this has been our 9-year reality. It has actually been my 24-year reality because of the older kids and their toddler years that just all smooshed into Joe's life. He's the preschooler that doesn't progress.
It doesn't end.
I sit with my closest friend-mom-of-a-child-with-special-needs and we spill our frustrations and joys. Kid you not, last night she texted me at 11:30 PM from the ER because her 18-year-old mentally retarded daughter got a ring stuck so firmly on her finger, it turned purple and took an entire ER team an hour to get the offending ring off while she spit in anger and kicked her mother and sister and screamed.
This morning I texted her that Joe had just finished an 8-minute seizure that showed no signs of stopping until I pushed his heavy body onto its side so I could get the emergency meds suppository administered (that was fun) and watch him come down from the convulsing that left a huge, foaming pool of spit all over him and a sore hand that smacked the wall repeatedly before I got to him and held it down.
Neither my friend nor I know when the next event like these will occur. There is no "off".
Joe is in the bath as I'm writing this. My day has had to change, from plans to be out and accomplishing tasks to what I can get done while keeping my ears and eyes wide open on him.
Hope always, always, always abounds in the goodness of God.
Where is the hope for parents on seizure watch and parents of toddlers and parents of adult kids with the mentality of a preschooler? We're all parenting the extraordinary in one way or another. Where is the hope for me?
Hope always, always, always abounds in the goodness of God. I'm not one for prescribing anything, because I well know after years spent placing my hope in methods and "prescriptions" that the only true hope is in what God has done for us, but if you need a tool of ministry, there is no better RX than the Word of God. Start here?
“ Many are saying of my soul,
‘There is no salvation for him in God.’
But you, O Lord, are a shield about me,
my glory, and the lifter of my head.
I cried aloud to the Lord,
and he answered me from his holy hill.
I lay down and slept;
I woke again, for the Lord sustained me.
I will not be afraid of many thousands of people
who have set themselves against me all around.”
— Psalm 3:2-6, ESV
Read more from Kendra Fletcher here.