This has been a good week. Physically my fibromyalgia has been brutal but my heart has been at peace since I wrote the post Grieving For Our Two Lyndas. It was a difficult to put such intense feelings into words but after writing about it I felt empowered. Another revelation I've had this week is that while I've always wanted to write about Lynda, I couldn't go back to the places I'd have to visit. I'd start writing and then stop. Now, there is an urgency to put her story down in writing so she won't be forgotten. There are stories that no one knows first hand besides me. Larry passed away and neither Kevin or Kristopher were born or old enough during the first ten or eleven years of Lynda's life to know what happened to their sister unless I've told them. Russ knows what I've told him and my mother only remembers the main events...not the details.
Some of the things that happened no one knows except me and it is important to me to tell Lynda's story and to be her voice once again. Maybe her story will help someone else feel powerful enough to advocate for their special needs child. Maybe her story will give another parent insight into what to look for if they suspect their child is being abused or neglected in a school setting or any other setting.
I had made it all the way to Friday of this week without really having anything trigger the overwhelming loss that is always just below the surface. When we got home to Booneville we checked the mail and had a letter from NMRC. There was a check from reimbursement for things that had been pre-paid for the week she was in the hospital and beyond. It wasn't a lot of money but it was within a few dollars of the amount of the remaining half of the cost of her headstone. As I walked into the bank to cash the check I was fighting a battle inside myself to stay calm. When the teller started to hand me the money I felt the tears coming and I turned and rushed to the front door. Russ retrieved the money and I sobbed because that was money that would have been used for Lynda to get cokes and chips at NMRC. It was money I usually used at this time of the year to buy fall clothes for her. It was trip money at NMRC. Clients receiving Medicaid funding for care such as NMRC or nursing homes are only able to receive $35 a month to be used as they wish. When Larry passed away all of the social security money that would have gone to Lynda went toward her NMRC costs.
This check caught me off guard and for a few minutes I struggled to regain my balance. Then I had to smile when I realized that this check that was almost exactly identical to what the remaining cost of the stone was and a direct answer to prayers. We have had no idea how we are going to pay for the funeral, her headstone, the flowers we'd like to put at the grave...but God knows. It is one of life's ironies that children and adults with special needs receive medicaid and social security income for their care throughout their lives yet when they pass away....there is no money available to help pay for their funerals. These children cannot qualify for life insurance due to their conditions. They do not even qualify for the ridiculous $200 and some $65 or so that Social Security pays toward a funeral that costs upwards of $7,000 at a minimum. They don't qualify because they haven't the prescribed units of work experience needed to get the death benefit which by-the-way has never been increased since social security's conception back in the 1930's, I believe. It is just more salt in the wound, so to speak. Money can't be left to children with special needs because all income has to go to the entity that is caring for them (nursing homes and institutions) so it makes it pretty difficult for the average parent to pay for a funeral unless it is pre-planned and pre-paid which we are seeing the benefits of now. If I couldn't take the money out of the hand of the teller Friday do you suppose I could have pre-planned a funeral for my child and payed toward it each month? I think we're lucky that Coleman's Funeral Home is willing to accept a payment plan for the remaining costs. I know that when we complete the payments for Lynda's funeral we are going to pre-plan and pay for ours so our kids don't have to be burdened with it. As for Lynda's...I don't think I could have done it before she died. It's hard enough to do it afterward. We've almost paid for it all with God's help and what a privilege it has been to do this for Lynda. What a blessing it has been to watch how God provides for our needs.
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