Tracy Keil places Matt Jr. in his dad's lap.
Matt and Tracy Keil may well be the poster parents for working the system, fighting for what they need, and living their lives on their terms.
Tracy and Matt were married in 2007 just before Matt, an infantry squad leader and seven-year veteran of the U.S. Army, was deployed to Iraq for his second tour. Just 43 days later, a bullet hit Matt in the neck. It injured his spinal cord and left him a vent-dependent quadriplegic.
A situation of total chaos eventually settled into a new normal for the Keil family, now living in their own 2,500 square-foot home that was built and donated to them by Homes For Our Troops, and taking care of two seven-month old babies.
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None of this would have been possible without recognizing choices, challenging the gatekeepers and refusing to accept no for an answer.
"I see many of the spouses who accept no," says Tracy, who quit her job to become Matt's advocate and full time caregiver. "Not me. The squeaky wheel gets the grease. I squeak a lot."
Matt was first transferred to Germany, then to Walter Reed Army Medical Center in Washington, DC; once stabilized he was sent to the Department of Veterans Affairs hospital in Tampa, one of four big poly-trauma units in the VA system. While the VA has great expertise in spinal cord injury, Tracy and Matt soon began to wonder if they had any options for a more aggressive approach to recovery. Tracy asked, "This is what life was going to be like? The rehab unit was like a nursing home; many older vets just lived there at the hospital. We understood that Matt would probably be there a year, living in some sort of assisted living situation."
Matt was eager to get back into the community; he felt restricted. "They didn't teach us about travel or getting out," says Matt. "They wanted us to stay put. We were begging for an outing. We got no response, so we just left. We weren't supposed to go off campus but we went to Hooters, and we got in trouble for it. They only found out about it because of Tracy's CaringBridge.org website."
Tracy didn't know yet if she and Matt had any choices but she and her sister did some research. They reached out to the community of vets and community organizations, including the Reeve Foundation. They found out there might be options for Matt, that the Department of Defense and VA allow and pay for some patients to seek care and rehab at specialized private facilities. The VA health care system doesn't promote the private care option; families hear about it word-of-mouth.
Craig Hospital, which comes up in almost any discussion of quality SCI rehab, was the closest place to Tracy and her family, near Denver. Calls were made, arrangements were set forth; Matt was accepted as an in-patient at Craig. The paperwork needed the signature of Matt's doctor, a neurologist at Walter Reed. The Keils, however, were told the transfer to Craig was denied. Tracy, naturally, did not accept this. She tracked down the doctor and asked him to explain himself: why wouldn't Matt have a better shot at rehabilitation at Craig? "He said, ‘I have 25 emails about you and Matt but I never denied this request to transfer. I don't know what's going on.'"
Tracy broke the news to the rehab staff. "We gathered the whole SCI team in Matt's room. ‘We are leaving. If we have to bring in the media, 20-20 or Dateline, whatever it takes.'"
The spouse, says Tracy, has to get real tough, real fast. "Service members are told no; it's ingrained in them that no means no. I'm not in the military," says Tracy. "I don't have to abide by those rules. Matt may have to follow protocols with regard to rank and so on. But I can talk to whomever I want in the manner I want."
Within days Matt was flown to Denver and began rehab at Craig. He was off his vent in four weeks; a pressure sore healed. "Craig is such a welcoming place," says Tracy. "I know he is much more independent now because of the care he got there."
Tracy and Matt Keil with Faith and Matt Jr.
Once the Keils were settled in their new house, they set out to start a family. Tracy says she was often told that she and Matt should not have children. "I don't think because he is injured we should dream less than anyone else does." So they found a fertility clinic in Denver, and through in vitro fertilization welcomed twins Matt Jr. and Faith to the world last November. The twins were very premature and very small, around three pounds each. Says Matt, "Both babies had health problems that were similar to mine when I was injured. They were on ventilators, had chest tubes, were on oxygen…it was all so similar; they overcame everything like I did. My kids are both fighters, like their parents."
Both babies weigh about 18 pounds now; they are healthy and active and just about sleep through the night. Matt is an attentive dad; with the help of an adaptive holder, he's been bottle-feeding the babies.
Today, injured soldiers and their families often reach out to the Keils. Says Tracy, "People are told, ‘You want to connect with the Keils. You want the life they found.' And it's true. We found our future. We know where we are going to be. We also recognize there are many past vets who fought for our benefits. We know it's our turn. We are there to help, never too busy to help someone get where they need to go. We want people to know they do have options."
Tracy recently learned of a family with circumstances very similar to hers and Matt's. A young soldier who was shot in the neck in Iraq was in a VA facility on the East Coast. His newlywed wife wondered about their choices. Tracy helped hook the couple up with the Military and Veterans Program (MVP) at the Reeve Foundation Paralysis Resource Center and coached them on seeking options, including private care. "They realize now there may be an alternative. They still have to work this through the system. But we're hopeful for them.
"This outreach is a way for us to give back," says Tracy, "to be able to pass along a gift, the one we received. We feel like we are so blessed to have a chance to help make a difference in other family's lives."
After years of dealing with the VA, Tracy has earned her stripes as a fighter. It's a role she won't shrink from but would love to let go of. "Despite what the VA must think, I don't enjoy battling with them for every little thing. It would be nice to just be able to just ask for something and have them say ‘Sure, it's in the regulations, here you go.' That would be wonderful."
It's never quite that easy but it may be getting better. Recently the VA agreed to offer compensation to caregivers of wounded warriors. This came about because of constant pressure from families and caregivers themselves, including Tracy. "I take wonderful care of Matt and I enjoy it," she says. "But he would be institutionalized without me. It's nice to be recognized for my role in his independence. They should value what I do."
Says Matt, "It's great the VA is finally recognizing the sacrifice spouses and caregivers have made."