18 months ago our daughter Brooke was in a car accident. The car she was a passenger in slid of an icy country road and slammed into a tree where she was sitting. And so at 7:08pm on December 10, 2005 our vibrant, energetic, first born child enrolled our entire family into the new and little understood world of traumatic brain injury.

5 weeks in the ICU with a Glascow Coma Score of 8 upon arrival dropping to a 4 within a few hours and eventually a 3 within a few days. The worst of the worst. This is when we first heard the words NO HOPE. Our time in the hospital was confusing, scary, devastating, lonely, and most of all shocking to the core. We had no control over the very life of our child. Her life lay in the hands of the doctors that did not know her, did not love her, did not have the primal need to fight for her life with every breath of their being. ICP monitors, sedation medications, ventricular catheters, brain surgery, bone flap removal, uncontrollable swelling. We were told NO HOPE over and over and over. We prayed and knew that we had to hope. We had to believe. Doctors pushed us to turn off life support and donate her organs, we said no. The doctors pushed us to sign a DNR we, said no. The doctors pushed us to send her to a long term care facility aka nursing home, we said no. The doctors pushed us to face what they called reality, we said no. We told Brooke that if she could not fight anymore she could let go, but we told the doctors that they could NOT! We were a thorn in the side of many professionals, but we wanted to fight. So we were released from the hospital with very few instructions, no follow up, no therapy, no help, no plan, a trache tube in her neck, bones missing from her skull, and a good luck....keep her from getting pneumonia and bed sores.

And so we took our daughter home with us. This meant rearranging our entire life and the lives of our young children. We were blessed with the ability to do this......not everyone can. I have been a stay at home mom for years. We have 5 kids, Brooke is the oldest. We had some savings and some money in a 401k so my husband took 6 months off of work. We worked with Brooke night and day. Bathing, repositioning, monitoring vitals and lungs, trache care, G tube care, feedings, medications, and countless hours of therapies. She did not qualify for any therapies at that time because there was "NO HOPE". Well we have rearranged those words to say "HOPE ON". We researched coma stim programs and then implemented them at home. We hit all the sensory systems with as much as we could. The kids played around her, we cooked all the same family meals, and life went on as best as it could. We included her in everything and would continue to HOPE ON. I will not lie to you, this was the most exhausting, emotionally draining, physically demanding, and heartbreaking work I have ever done. Words can not begin to express that part of the journey. We were numb, in a hazy fog, shell shocked, and ALONE. We pinched, poked, and prodded.....We moved her, stretched her, and stimulated her. Finally one day something got through. Daddy's skill saw. He was working on finishing the addition to our home that he had started before the accident. Her eyes did not open, but her whole body pulled forward and her mouth opened wide. She had responded. Where there had been nothing for over 2 months ........ there was a response. And so began another new world.

Over then next several weeks she began to open her eyes. Tiny slits at first and then bigger and wider. She was waking up, oh dear what might we find? Would she be in a vegetative state? We were so happy and yet so terrified. Soon she was awake, or so we thought, but she was so blank.....so totally blank. Her eyes were hollow and empty. Her limbs were loose and floppy. Here eyes were open, but she was just blank. At that time the fear was almost suffocating, but we had to continue to HOPE ON. We continued to work, any and every therapy we could think of or find information on we would do at home.....alone....no specialists, no therapists, no doctors. Just a mom, a dad, and a bunch of shell shocked and saddened siblings. But we kept on. The addition was finally finished, and that meant we could free up the room next to Brooke's for a therapy room. Great idea....no money. So we kept doing therapies on the living room couch or Brooke's bed or the wheelchair that we had to fight tooth and nail to get on loan from the hospital when we took her home. We talked to her as if she understood every word. We asked her questions and encouraged visitors. We stuck her hands in crunchy granola or gooey pudding, we put different smells under her nose, we used cold packs on her skin, we moved her body parts for her and told her what was being moved. Anything, everything, some things that seemed completely ridiculous. We kept going.

Then one day we noticed that she was blinking her eyes differently when we would be talking to her. Soon we worked out a basic form of communication. One blink for NO two blinks for YES. And she did it. This was very hard for her and sometimes her two blinks were more like a blink with a squish at the end, but she was communicating. This was slow and difficult. Brooke was still in and out with her level of conscious arousal, but when she was alert, she would answer. It took her time to process what we were saying. Cognitively she was slow......really slow, but she was definitely understanding. During this time she mostly answered when something was directly related to her comfort or current wishes. She could not really engage in anything abstract or removed. We were so excited so we called in the professionals. Maybe now she could get some help.....some rehab.....some support. BAM, again we were hit with pessimism and discouragement. We were told the oh so popular phrase....."you are just seeing what you want to see, there really is no hope of any meaningful level of functioning here". There it was again NO HOPE.

I was crushed, depressed, defeated, and done. I didn't know if there was any fight left in me, then I thought no.........I'M MAD! How dare they! They don't know my child! They have not spent hundreds of hours pushing her! They have not cried and sobbed all night long just to get up in the morning, put on the happy face and keep going! They just don't know, and they are WRONG! So we fought some more. We kept working, pushing, researching, documenting, and fighting. We were not going to give up. We were going to HOPE ON. We knew that if there was any chance of her getting rehab services, we were going to have to find some way to PROVE what we were seeing. PROVE she was there and deserved rehab time and attention. So we kept working with her but this time we filmed her responses. She was so inconsistent at this point in her recovery that we needed to catch it on tape so we would have the proof needed to get her some help. More weeks, more work, more crying, and less sleep.....finally we had it. We contacted a pediatric rehab facility in a larger city to the north of us, told them what we had been seeing, told them that we knew all the professionals said it was not possible, and begged for an evaluation anyway. I remember that phone conversation so vividly. The woman on the other end of the phone said....."We have seen this before" The tears came so quickly after her words. Finally someone who might, just might help us. I could not stop crying. Was it possible that someone out there might actually help us? Was it possible that I actually was sane and not lost in my own delusional fantasy? Was it possible to end our time of fighting alone? And so began another new world.

Brooke entered her first inpatient rehab on April 9, 2006. She spent 6 weeks working on intense therapies to help her become more consistently alert. The doctors and therapists told us there was HOPE. What happened to that other word?

Brooke has been through 2 rounds of inpatient rehab so far and will continue to go back once or twice a year for several years. The doctors and therapists work WITH us now. They teach us what we need to know and how to best help Brooke reach the next level of recovery, and we go home and work on it. Brooke makes tiny bits of progress each and every day. She has never had a backslide. She will continue to recover. We are finally at a place where she has support and help. We can breathe a little easier now. We know that we are on our way and we don't have to fight and beg and plead as much. We still get overwhelmed, and wonder if we can keep going. We still have moments of weakness when we start to doubt ourselves and our own eyes, but we get through them. We can just work hard and keep going now. We can smile and continue to HOPE ON.

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