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“She was an angel her whole life, both on Earth and in Heaven !!!!”
Nicole Jennifer (Nikki) Waege, Trisomy 18, 2/10/86 – 2/12/04, Chetek WI, USA
My daughter, Nicole Jennifer Waege (Nikki) was born on 2/10/86 with Trisomy 18. I was 31 years old. The Dr.s said she wouldn’t live long. I recall early in my pregnancy rubbing my stomach as I stood in the shower and saying to myself “I hope my baby isn’t retarded”. Now, I didn’t care. I just wanted her to live. The Dr.’s also said she would not smile, show emotion nor would she know us. How wrong they were. She was very happy and she always had a smile for us, even if she was sick. She knew us and others because her face lit up. She loved to give hugs and touch us and others, but it had to be her idea. She didn’t like her hands touched. She sang to us in her own language. We took her with us wherever we went and she loved it. I dressed her up in costumes and put make-up on her and she went trick-or-treating on Halloween with her cousins. Many times during her life she would do something, but then never do it again. Like rolling over, crawling and sitting up in her bed to name a few.
I gavage fed her for a long time. I tried and tried to get her to eat orally so she wouldn’t have to have a G-tube, but she finally had to get one. She loved to eat orally, but she never ate enough to survive. She got pneumonia a few times and the Dr. wanted to cut out her voice box to prevent this, but I said no. I would never be able to hear that beautiful singing of hers. I worked diligently with her on many things to get her to do things. I put rolled up wash cloths in her clenched fists and rubbed them often and eventually got her to keep them open. She really knew how to wrap people around her little finger so she wouldn’t have to do anything for herself. I stood behind her and walked her all the time. She loved to be in her walker, but many times she would push more with one foot than the other and just turn in circles. She loved the water. Once she was caught at school playing in the water fountain. She loved to go swimming with us whether it was the lake or the pool. She loved to go bowling and being pushed in her wheelchair for long walks with me. She loved riding on the Tilt-A-Whirl. She loved music and things that lit up, but mostly she just loved to be around people. Eventually she had to have her spine fused so she could ne longer sit up on the floor with her legs crossed. We took her to 2 SOFT conferences. The first was when she was little and we flew to Philadelphia and the second was to Chicago because we could drive there. I so wanted to go to more conferences, but did not have the money. I wish to change it so that SOFT has the money to set aside funds for all parents that want to go but can’t so they will be able to do so.
I recall being seen by a physicians assistant once and this is what he said to me: “What good is she? She just eats, sleeps and poops”. He had me in tears. He left the room and did not come back in. I wish I would have reported him.
On 2/25/99, her sister, Mackenzie Nicole Curtis was born. I named her that because I wanted her to always have a little piece of her sister with her. Nikki loved Mackenzie, but I think she was a little jealous too. No emotions hah? These Doctors need to know that our children do live, they have every right to the best care possible and YES, they do show emotions, feel pain and know people. Just because they may not live long does not mean they should not get the care they deserve.
Around 2002 she was in the hospital in Minneapolis. I was there by myself with her because it was so far away from where we live. She had to go there when she was seriously ill. The Dr. said she was going to die. Soon she was awake and smiling at me. I held her and wondered when she was supposed to die. How could she when she was awake and smiling? I tried to get in touch with the Dr., but he was in surgery. When he came in later that day he looked at Nikki and said “she fooled us again”. She had to be put on oxygen and she had a C-pap and later a bi-pap machine at night. She also wore braces on her legs at night.
On February 10, 2004 she turned 18. Mackenzie and I brought cake and many balloons to her at school so her friends and classmates could celebrate with her. The next morning she was awake in bed when Mackenzie’s dad Steve went to feed her, but when I went to get her up for school about an hour later, she was fast asleep. I decided to keep her home since it was only a half day of school. At 11 AM she was still asleep, but since there was an aide coming, I got her up. I put her on her toilet, washed her up, brushed her teeth and dressed her. She remained asleep. I thought her CO 2 levels must be high so I increased her oxygen, but she still didn’t wake up. I called my sister to come and help me and we called the ambulance. Around midnight the Dr. thought she was doing a little better, even though she still hadn’t woken up, so we went home.
The next day I went to the hospital to be with her. She still did not wake up. The Dr. said she was not going to live. I knew she was going to die because I thought back to the time when she was in the hospital in Minneapolis and she had been awake and smiling, how could she be dying. She had an infection in her blood and everything was shutting down. She had to be suctioned a lot. Both nights that she was in the hospital she had a terrific nurse. Some teachers and aides came to see her. Some of my family that lived in the area came to see her and be with us. I told them to go home. I did not want them to watch her die and I wanted to be alone with her. I crawled into bed with her and held her in my arms. I sang the silly little song that I had made up for her over the years. I told her how much I loved her and would miss her, but that she could go and in the blink of an eye she was gone. My beautiful girl was gone.
A couple of days later I went to the hospital to see when the nurse she had worked again so I could bring her an angel bear and some balloons, but they said she had moved. I can’t help but think that she must have been an angel. How could she have moved away so fast?
We went to the SOFT conference in Chicago shortly after she passed away because I wanted to release a balloon for her. It was there that we met Carey Ann. She looked and acted like Nikki and she didn’t like her hands touched either. Oh how I wanted to take her home with me. I just found out a week or so ago from her dad, Craig, that she had passed away. I was devastated. It was almost like losing Nikki all over again.
She has been gone for 10 years. I remember her death like it was yesterday. I so miss that smile of hers and that beautiful singing!!!!!!!!!!!!! She was an angel her whole life, both on Earth and in Heaven !!!!