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Reflections: Patt Beise

Kenji Hobbs

15 September 2021

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Reflections: Patt Beise

Chateau Retirement’s “Reflections” series highlights the rich life experiences of our residents. This month, Sue Calvin tells a fascinating tale of her family’s life in Prohibition-era Seattle.

 

 

Patt Beise

 

The dawning of every day brought hurdles I could hardly imagine and challenges that seemed insurmountable. The hand I was dealt in life was not of my choosing but I had a child, Stephen, and because of my love for Stephen I did things I once thought impossible and together we climbed mountains.

 

 

I met my husband Rob in 1966 when I was in nursing school at Clark College. He was stationed at McCord Air Force Base in Tacoma. My best friend, Ruth invited me up for her engagement party and had arranged a blind date for me with her fiance’s roommate, Rob. We hit it off, we dated a few months and he proposed at the end of May that same year and promptly got orders to go to Glasgow AFB in Montana.

 

 

We planned to marry when I finished nursing school in 2 years and went about communicating via letters and tapes. Rob was at my home in Vancouver for Christmas and the two-year wait quickly became the following summer. July 8, 1967 we were married, moved to Glasgow and I got my first taste of service life. The AFB was scheduled to close in 9 months and Rob planned to leave the service. Instead, he chose to reenlist for the next 16 years to receive the retirement pay benefit, but with the stipulation he would return to Tacoma so I could continue my education, plus, being separated was difficult on our relationship.

 

 

We decided to have a family and I got pregnant right away. Rob received orders for Vietnam but was granted a delay till after our child was born. Stephen was born June 11, 1969, and because I found out that night that I had a “borderline pelvis opening” in addition to Stephen being breach, an x-ray was ordered. The x-ray showed the head would not get through the birth canal, but the doctors were not telling me the rest of the x-ray story. I had a C-section and the next morning found out that I had a very sick child with hydrocephalus, spina bifida, club feet and paralysis below the waist. The hydrocephalus was pre-birth, and the bifida showed 11 open vertebrae. His back was not flat, and his head measured 16.5 inches, three inches larger than the normal 13 inches at birth. He had surgery on the bifida when he was 12 hours old to close the back and stop the spinal fluid from leaking. I prayed he would die because I couldn’t imagine taking care of this child.

 

 

At three weeks the doctors did an air study to determine if Stephen was a candidate for a brain shunt implant. He had enough brain tissue and the shunt implant was performed. Without enough brain tissue the operation would not have been performed and he would have died.

 

 

We brought Stephen home when he was 5 weeks old just before the astronauts landed on the moon, 1969. Why us? We wanted this baby. I can remember seeing a picture of a baby with hydrocephalus in my nurse’s training pediatric book and thinking to myself, I don’t know what I would do if I had a hydrocephalic child.

 

 

Casts were put on his feet and changed once a week to begin correcting the club feet. We worked with him to hold his head up. Because of the paralysis, if I overfed him by one bite, he would projectile vomit. While we sat in a recliner and held his hands, we continued to pull him up till he gradually held his head up. Our parents thought we should institutionalize him, but we said no. He was our baby and we would care for him. This was my full-time job! I exercised his body and he could finally hold his head up. He was growing and thriving.

 

 

When Stephen was a year old, Rob got orders for Thailand and I moved to Redmond to be closer to my mother. At 9 months old, I took Stephen to UW Hospital to be evaluated. He would never be able to walk but because he had strong arms, the doctors said he would do well in a wheelchair. That spring my father passed away due to a construction accident that broke his neck.

 

Stephen started to talk, picking up words quickly. He couldn’t crawl into a room and point so he had to learn words. At 15 months he said his first sentence, “I want a drink of water”. His favorite toy was a telephone, because he could talk to anyone, and he often said what he had heard me say on the phone.

 

At about 18 months. Stephen had surgery on his eyes and we didn’t know until he was well healed if both eyes were looking and focusing on the same thing. The doctor put 3-D glasses on Stephen and showed him a picture of a fly, telling him to pick up the fly’s wings and Stephen did. This was huge, and we celebrated. He learned to hold his head up and we celebrated. He learned to speak, and we celebrated. He managed to crawl using his fore arms to move his body and we celebrated.

 

 

We moved often with the military which was a challenge in and of itself and with each move, we were introduced to new doctors. In San Antonio, a doctor commented that Stephen’s body was very strong and there was a program at Wilford Hall, the main Air Force teaching hospital, for children like Stephen and they were going to try and get him up and walking with crutches. Slowly he went from standing for five minutes to an hour using metal crutches to move his body forward. He was three. Stephen was getting older, and things were going well.

 

 

1972 brought back surgery, 7 shunt revisions and a full body cast due to back surgery. While in the body cast, a nurse came in the middle of the night, took Stephen out of bed and gave him a drink of water. Stephen nearly drowned. When the doctor came in the next day, I told him that only he and I were to pick him up. No one else. The doctor said, “You must be more objective” and I said, “Get out, I can’t be objective about my child”.

 

 

That summer as I watched him walking with crutches, I thought he would be a good poster child for the March of Dimes. He was selected and spent two years as the poster child doing lots of new things including being photographed, attending events, meeting celebrities, and time at a day camp. He even experienced a broken leg after attempting a summer salt.

 

 

There were more military moves, more hospital visits, more body casts and body cast complications, sores that didn’t heal, and challenges with his education. I was vigilant in responding to new doctor’s reactions to Stephen. The medical staff didn’t see Stephen when he was doing well, and I found myself dealing with medical stereotypes.  What I felt Stephen could do and what the medical staff felt he could do differed, often putting me at odds with the medical staff.

 

 

In 1st grade Stephen was having trouble with math. His teacher was great about helping him and then another back surgery, this time to put a rod in his back to keep it straight, and another six weeks in the hospital and it was at this time I found out I was pregnant with Ryan. In 1st grade Stephen was in a regular school while Kindergarten had been spent in a handicap school. Back home Stephen couldn’t go back to school because he was in a cast and had to be lying down. The teacher came to the house to give him homework. National testing for first graders occurred during this time and he tested at the 4th grade level in vocabulary, math was terrible, and writing was not good enough.

 

 

Ryan was born in July and we moved to Ft. Worth, bought a house and Stephen was in a disabled class in a regular school of 2nd and 3rd graders. He met another boy with similar problems, but his language was not as good as Stephens. They became good friends and Stephen helped him learn words. There was a play, “Stone Soup” planned for the end of the school year and the teacher asked if Stephen could be the lead in the play and his friend was to be the other lead because his language had gotten much better. That summer Stephen went to a handicap camp in a wheelchair which enabled him to use both hands. He learned to operate the camera we gave him and he came home with photographs, lots of camp photographs.

 

 

I went to Washington to see my mom and took Stephen to Madigan Hospital because he had spinal fluid leaking. Ryan had his second birthday. Back home my mother said she didn’t like Stephen’s color. I went back to Madigan Hospital and Stephen had another shunt revision. My mom made another comment about Stephen’s color so I made a well-baby appointment with his regular doctor. When we arrived for the appointment, his regular pediatrician wasn’t there and we saw a new doctor. Stephen complained of his neck hurting and it didn’t seem to get better. One day in his room he asked if I could bring him some liquid. I took him a glass and he dropped the glass of water. I saw that his lip was drooping and I didn’t understand what he was saying. I suspected a stroke. I took him to the hospital to find out his right vocal cord was paralyzed and he couldn’t swallow so the medical staff began suctioning him. The next morning, I arrived and heard the nurse say, “Stephen be quiet, your mother is coming”. This nurse couldn’t understand him and thought he was only capable of babbling and assumed that I as his mother thought he could do more than he actually could. The truth was he could be understood as well as anyone else, but he had a paralyzed vocal cord which affected his speech. Once again, I encountered the stereotype. I often felt if nurses who saw him in his final hours had seen him when he was at his optimum, they would have observed a whole different child.

 

 

The medical staff came in to do blood work. Later in the day I left to have dinner and when I returned, equipment was being wheeled out of his room. The regular pediatrician came over to me and said, “I’m sorry”. Stephen was 9. I never got to say good-bye, give him a hug or tell him I loved him.

 

 

We had a wake and all his classmates were there as well as people I didn’t know. The funeral was the next day. The church was packed with all my friends. We flew home and Stephen was buried at Sunset Hills in Bellevue. We loved and cared for Stephen for as long as we had him. Together we healed, grieving the loss of Stephen but eternally grateful God had given us Ryan.

 

 

Stephen was not the child I expected and while years earlier I had viewed a picture of a hydrocephalic child and didn’t know what I would do if I had one, I found out. I have a strong faith and there is one thing I believe. Be careful what you pray for as God may answer your prayer in a way you never expected.

 

 

I advocated for him tirelessly.

 

 

I taught him every day.

 

 

I encouraged him.

 

 

I cared for him.

 

 

and

 

 

I loved him dearly.

 

 

The next Christmas Ryan had a cold and I didn’t like the way he was breathing. I took him to the hospital, and he was admitted. I wanted to take him home and use the equipment at home, but the doctor said he needed to be admitted. I agreed but told the doctor he would need to admit me also, which he did.

 

 

I truly feel Ryan was a gift from God, because, if I hadn’t had a two-year old to keep me busy that first year after Stephen’s death, I think I would have been committed to a mental hospital. I was grief-stricken but I had a reason to get up in the morning. I had someone who needed me, and I needed him. Ryan was so perfect and able to do everything that Stephen couldn’t. I was filled with joy watching him get into everything and never took his abilities for granted. Ryan has grown and matured into a very intelligent and talented man. He recently married Amy and they have a beautiful and clever son, Logan.

 

 

Chateau Retirement Communities are based in the Seattle, WA area. Chateau Retirement offers Independent Living, Assisted Living and Memory Care living options. Contact us today to learn more about our family owned and operated communities, or schedule a tour.

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