This online memorial was created in loving memory of Timothy Pancarowicz, whose life story is told throughout this memorial website. Please sign Timothy's guest book and let us know you came to visit. We will remember Timothy forever. The song "Hero" that is playing on this first page, was the song that was playing as Tim died. He is a hero.
On June 19, 1985, Timmy made his entrance into the world, ten weeks before his due date. I had placenta privia with full abruption. I woke during the night; home alone with my one year old daughter, Amanda. Tim's dad, Dave, was working third shift. My dad and his wife, Elaine came over, and Dad rushed me to the hospital while Elaine stayed with Amanda. Dave met us at the hospital. It was around 12:30 in the morning when we arrived. By this point I had lost so much blood that my doctor informed us that I needed a blood transfusion before he could deliver Tim by emergency c-section. Finally, at 4:01 Tim was born. I barely got to see him before he was rushed to a nearby neonatal intensive care unit twenty minutes away.
Tim had suffered lack of oxygen while we were waiting for my blood transfusion. Dave went to the hospital to talk with his doctors. While Tim was being kept alive by a respirator, the doctors hastily inquired Dave to make the decision of sustaining Tim’s life or letting him die. Without hesitation, Dave insisted they do all they could to save his life. We did not know then, the shadow that had been caste over Tim’s frail body because of “saving” his life and thus required a lifetime of medical issues. Being young and naïve, we assumed that once he got through these first hurdles, we would have a happy, healthy son.
On August 21, 1985, two days before my due date, Timmy was finally healthy enough to come home, and become part of our family of four. From the beginning, there were difficulties. The first was eating issues. We would sit for over an hour trying to feed him a four ounce bottle. He was extremely fussy, nothing seemed to calm him. His body was rigid; he couldn’t cuddle or snuggle up to me like Amanda had. At each doctor’s visit, I was told to be patient that he needed time, he was a preemie, and premature babies develop slower. I wanted to believe this, I prayed this was true, but as days turned to weeks, and weeks into months, I slowly began to lose faith and optimism in having a healthy son.
Tim also had many more health issues than other babies. The first cold he got turned into pneumonia and he was hospitalized. This would happen many times. He couldn’t seem to fight off any cold. By the time he was six months old, I was convinced that Tim was not going to develop normally. He was still very stiff and rigid, he still could not finish a bottle in less than an hour and he cried nearly non-stop. Finally, in desperation, I called the early intervention center (EI). I only needed to walk through the door and the doctor diagnosed him with Quadriplegic Cerebral Palsy (CP). What life this would mean for Tim, we had no idea. Of course the doctors tried to be optimistic and tell us that many people with CP go on to lead productive lives with the help of therapy. We started therapy immediately, but as time went by, there was not a lot of progress, and Tim continued to suffer from repeated respiratory problems.
Eating issues continued with Tim, by the time he was eighteen months old, he weighed only eleven pounds. We tried adding a substance to his formula to increase the calories, but he was still taking over an hour to finish his bottle, thus causing him to burn more calories than he was taking in during meal times. Finally, we were referred to Tufts New England Medical Center (NEMC) in Boston to see a growth and nutritionist doctor. He was a wonderful, caring doctor. He immediately admitted Tim because by this point he was literally malnourished. He stayed in the hospital for three weeks as they ran test after test to determine if Tim suffered from some rare disease. Each time they described some new disease, we waited anxiously for the results; and every time it came back negative. In the end, they labeled it as “failure to thrive”. He did not have the strength to suck and swallow as fast as most babies and was burning off all the calories. The solution was to supplement his feedings with a nasal gastric tube (NG-tube). He would be fed through this tube twenty-four hours a day along with bottle feedings. This way he would get his much needed nutrition. Slowly he began to gain strength and weight; and slowly we began to see some progress in his development. He was happier, and did not cry as much. He was still very stiff, but we were working on that with physical therapy. I cried with joy one day when Tim actually supported himself, briefly, in a sitting position three weeks before his second birthday. We were elated! There was hope, something to hang on to; maybe his disabilities would not be so bad. Tim may just have some developmental problems but lead a fairly active life.
On June 2, 1987, our world came crashing down. Tim had a simple ear infection. It was treated with antibiotics, but his fever would not subside. It reached 108 degrees. He was rushed to the hospital; Dave and I were put in the Family Room. We knew this was not good, they called a priest in to give Tim his last rights, but Tim was not ready to leave us. He was a fighter. They stabilized him and transferred him to our local children’s hospital. Again he crashed and they called a code blue. Once more, they stabilized him. They determined that Tim had gone into a septic shock and was discharged after one week. He was a different baby. Now he would not suck on his bottle at all. He made no effort to look at me or to grasp at toys. Something was drastically wrong.
Tim was admitted to NEMC again on his 2nd birthday. Once again, they ran a battery of tests. This time the news was devastating. Tim had lost the ability to suck and swallow and he was cortically blind. The sepsis had caused more brain damage. To this day, I do not know how we got through this time. I think we were still in shock, still in denial, not ready to comprehend our dismal news. We were skeptical on Timmy’s status, so when his doctor wanted to insert a feeding tube surgically into his stomach, I refused. I insisted that once he was home and relaxed, he would do just fine. I was wrong. That August, we agreed to the surgery, which also included tying off the bottom of his esophagus because he was aspirating frequently.
To say that this was an emotional time for us would be an understatement. We now had to accept that our little boy would never walk, talk, eat, or see. All of our dreams for him came crashing down at once. The only way to describe this feeling is like the death of the child you expect to have. We still had our son, but his life would forever be so much different from other children.
In February of 1988, we gave birth to our third child, David. He was born six weeks early but with no problems. We were on cloud nine. He was such a blessing, such a joy to watch grow. I think we took Amanda’s development for granted. Every milestone with David was so exciting. Yet, as he passed Tim in every way, it was bittersweet. It was a constant reminder for what had happened with Tim.
Each passing year, Tim’s health continued to decline. He was in and out of hospitals with pneumonia and severe seizures. His muscles were extremely tight and his orthopedic doctor convinced me to allow him to operate on his tendons and hamstrings in Tim’s legs. This required him to be in a full body cast (from his chest to his feet) for eight weeks. All of this was taking a toll on me. I was falling apart. I wanted to care for my son who so desperately needed me, but I also wanted to play with Amanda and David and take them places that other children did. It was extremely difficult. I was constantly at a doctor’s office or therapy or some sort of appointment. I felt as though I was on the verge of a nervous break down. Tim was still very irritable and crying continually. There were times when I would shut myself in bedroom and cry for an hour. We were desperately awaiting an absolution. I desperately needed help. Dave was working twelve hour days, seven days a week. Dave felt so helpless that working was the only way he knew of to support his family. He was partly in denial that his son would always be handicapped. He buried himself in work in order to block it all out. We barely saw each other. We barely knew each other. We both knew something needed to change.
Eventually we were introduced to the Tavares Pediatric Nursing Home. At first, we used them for respite; Tim was able to stay there for a few days each month. Eventually we decided to have Tim live there. He would receive the nursing care he needed. It was a difficult decision to make, but turned out to be the best. There was no longer the built up resentment, or frustration that I once had while he was living at home with us. We were finally able to enjoy our time with Tim. For the next several years, Tim thrived. He was happier, he laughed, he giggled he was so excited with his new environment. His health improved because he was away from the general-public. As a result, he was not exposed to so many germs. The staff was very supportive of our needs. They knew how to handle severely disabled children and they knew how to guide us through difficult decisions. Several other parents and I formed our own support system. We could share our fears, our frustrations and anything else that was happening at the time. All of our children have since passed away, but the bond we formed will last a lifetime.
Although Tim’s health was now stable, the CP was taking a toll on his body. He had severe scoliosis; his spine was shaped in an “S” with a 95 degree curve. Both of his hips were dislocated and his muscles were extremely spastic. His body was so rigid that getting him to sit in his wheelchair correctly was nearly impossible. His orthopedic doctor suggested an operation to put a rod in his back. If we didn’t do this, his spine would continue to curve, and his ribs would crush his lung. Unfortunately, when his pre-op tests were performed, it was found that Tim would more than likely not survive an operation such as this. We were told there was nothing more we could do for him with orthopedics. They told us within five years, he would begin to suffer more repertory problems. Tim was twelve years old. We resigned to the harsh reality that our son would not be with us much longer, we would enjoy whatever time we had left with him.
It started on January 3, 2001. Tim was hospitalized for the first time in years with pneumonia. His health continued to decline throughout that year. The episodes of pneumonia became more frequent. Each time he went to the hospital, Tim was frantic, he hated it there, he cried every time a doctor or nurse walked into his room. Finally, one night in August, Amanda was sitting with him. Tim had a mask, which forced oxygen into his lungs, strapped to his face. He cried non-stop. Amanda called Dave and begged him to make them stop. She cried that Tim did not want any of this. That was when we made the most difficult decision any parent could ever make for their child. We took him back to the nursing home and signed papers that stated Tim would be given comfort measures only. He would never go back to a hospital. Tim seemed relieved. He did recover from that bout with pneumonia, but three months later he was sick again. This time we knew would be the last. I whispered to him that it was OK for him to go now. I told him goodbye. He was given medication to keep him calm. He went to sleep. At 12:01 am on November 11, 2001, Tim gave up his fight for life. He died on Veteran’s Day, Tim was a true Veteran.
|
