HOPE & LIGHT

Today, I am linking up with Tuesday at Ten, the weekly blog link-up where you have six days to use the prompt word of phrase as a part of your writing. This week’s prompt word is TRUST.

Twenty-first birthdays are usually a time for celebration. Our child is now an adult. Our job of training our son or daughter in the fear and admonition of the Lord is basically over. And our young adult is now ready to spread his wings and set out into the future. But with our son David, none of this was true. David would never be ready to live on his own because of his extensive medical needs.

David had massive infantile spasms as an newborn, resulting in severe brain damage. And his condition had deteriorated to the point where he was now totally dependent upon others to meet all of his needs. He had a long list of medical diagnoses, and was tube fed and bed bound.

Prior to his twenty-first birthday, David had received services through the Texas Medicaid children’s health program (CCP), and through it he received 112 hours per week of private duty nursing care in our home. But in Texas, Medicaid recipients lose their eligibility for CCP services when they turn twenty-one. His other Medicaid program, Home and Community Services (HCS), had a cost ceiling that would only allow him to receive four and a half hours of nursing services a day. The Department of Aging and Disability Services (DADS), the regulatory agency over David’s Medicaid programs, decided that the HCS program was no longer a safe placement for David. In essence, the only options they were giving us were to take care of David’s extensive needs (both medical and financial needs) on our own, or put him in a state school.‬

After talking with David’s neurologist and pulmonologist, and also visiting the state school closest to Houston, we knew this wasn’t an acceptable choice. David’s doctors said that he probably wouldn’t survive six months with the level of care he would receive at the state school, and even the nurses at the state school said they would not be able to meet his needs. Because of my own disabilities, there was no way I could meet David’s needs on my own, and my husband was at work during the daytime hours. So we began sharing our situation with our church and asking for prayer. We were facing an impossible situation, and we desperately needed God to intervene. And I was facing one of the biggest tests of my decision to trust God, not only for salvation but for every detail of my life. I felt overwhelmed, but to the best of my ability tried to hold onto hope that God would move on our behalf.

According to the Merriam-Webster Dictionary, trust is “assured reliance on the character, ability, strength, or truth of someone or something.”  Trust in God is confidence that what the Bible says about God’s character, ability and strength is true. Was God really in control of this situation? Would He be faithful to make a way for us to continue to care for our precious son in our home? Could God really be trusted,  even in this situation?  We chose to believe God was who He said He was and would do exactly what He said He would do, even if at the time I felt like I was shaking in my boots. We committed the entire situation to the Lord in prayer, then asked Him to show us what steps He wanted us to take.

The first thing I sensed God telling me to do was to send out prayer updates to our friends.  This was before most people were on Facebook, so every couple weeks I send an update by email. Then one day when I was praying, God brought the name “Advocacy Inc.” to mind. We had never used this advocacy agency for people in Texas with disabilities, but I had repeatedly heard about it during the yearly planning meetings while David was in a home bound school program. So I contacted the Houston office of Advocacy, Inc., now called Disability Rights Texas, to see if they would be willing to take David’s case.
This was the beginning of the solution to our “impossible” situation.  Because of the precedent-setting nature of David’s case, the two head attorneys from the Austin office decided to take our case.  Then through a series of hearings and court filings, we finally had the settlement we needed. David would continue to receive the same essential homecare services that he had received prior to turning twenty-one. As we obeyed the steps God gave us, God had turned around a situation we in our own strength saw no way out of. And in the process, a legal precedent was set that has helped other families in Texas who were facing situations similar to ours.

David is now thirty-one years old, and we know that this battle was worth the pain involved. We saw that God really could make a way when there didn’t seem to be a way, and our trust in our Lord and Savior grew. We had learned not to lean on our own understanding – which showed us no way out of this situation, submitted to the Lord by taking the steps He led us to take, and watched in amazement as He straightened a path that in my eyes looked impossible before our eyes.