Josi

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located in central North Carolina, serving families in Wake, Durham and Orange and surrounding counties

A Local Story Printed Nationally

This article originally appeared in DOWN SYNDROME NEWS, April 1999

A Grandmother's Pride and Joy

Our daughter, Kristin Ferguson, and her husband, Jim Ferguson, presented us with our fifth grandchild on February 11, 1998. Her name is Josephine (Josi) Berkley Ferguson. We, as a family, have been blessed with her arrival and give thanks continually for her good health, her lovely, happy personality, and her steady growth and development.

Jim and Kristin have a 2 year old son, Allen, so when Kristin became pregnant, we naturally all hoped for a little girl. Our wishes came true. Kristin's obstetrician suggested she have an ultrasound done in her 4th or 5th month. It was at that time that they were told they were expecting a baby girl -- with Down syndrome. It honestly was devastating news -- simply because we didn't give that a thought. We grieved and reached out for each other, as a family. Kristin and Jim were asked by their doctor, "What do you want to do about it?" Without hesitation, they said they would bring their baby to full term.

The next step in all of our lives was information gathering. Kristin and Jim live in Raleigh, North Carolina, and we live in Wyomissing, Pennsylvania. They turned to the Internet and found the NDSC. I called Kristin's pediatrician, a good friend of our family (who has not treated our children for fifteen years), Dr. Peter Muhlenberg, who told me about our local Arc. They contacted the NDSC for us and we received a packet of information. The same packet was sent to our daughter and son-in-law. We read everything we could get our hands on. Our local hospital set up a time for my husband and I to view a wonderful video geared towards grandparents of children with DS (the people in the video are local folks). I recognized one set of grandparents as parents of a former sixth grade student of mine. Small world! An even smaller world-their grandchild is now included in my oldest grandson's first grade class!! Kristin and Jim began putting services into place prior to Josi's birth.

Josi was born two months premature because she was not eliminating the amniotic fluid. So Kristin had to have a C-section at the University of North Carolina Hospital. There were complications when Josi was born and she was on life support for two weeks. Kristin saved all her milk. We all (parents and two sets of grandparents, aunts and uncles, and Allen) visited Josi, talked to her, and sang to her. Every time they took her off the respirator during those first two weeks, she could not breathe on her own. People from all over this country were praying for her and our dear little Josi, a sweet little fighter, started breathing on her own. The doctors had to insert needles to remove all the built-up fluid in her lungs. She was a large baby for being two months premature. It wasn't too long after that they removed the feeding tube. The nurses did not give much hope for Josi to breastfeed. Kristin is a determined gal and Josi is just like her mommy. Josi did not do too well at first, but Kristin kept trying and within a week, Josi was suckling like a pro and she was allowed to go home. When she was born, the doctors told Jim and Kristin not to get their hopes up with regard to Josi's homecoming. They predicted she "might" be ready to go home on her own on her "real" birth date (the middle of April). She was home three weeks after her birth. Thankfully, Josi's heart, digestive system and bowels checked out normally. She did have leukemia blood levels, which had to be monitored every week for three months. Her blood work continues to indicate normal levels. We attribute Josi's miraculous growth and development to the many, constant prayers for her.

I cannot describe how wonderful it feels to just hold her and watch her! She is too sweet.

by Stella Jo Paul

Josi's Story as told by her mom

Four days after we moved into our new home I received a phone call from my doctor telling me that my AFP (alfa-feta protein) score was low and that I had the option of having an amniocentesis. He explained to me that the low score meant I was at risk of having a child with Down Syndrome. While surprised, I was not alarmed because many of my friends had told me stories of false positives in the AFP. Being a person who operates better with more information, I decided along with my husband to have the amniocentesis the next day. Luckily my parents were arriving that weekend to help us unpack the house so they were there the day of the procedure.

The amniocentesis was very uncomfortable but not painful and I was still in good cheer believing that I too was going to be a "false positive" statistic. But when the phone rang six days later and my doctor's voice was on the other end, I realized the tests were going to prove accurate in my case. As he said the words, "Your test results showed an extra 21st chromosome which tells us that your baby has Down Syndrome", I was listening as if I were an outsider eavesdropping on someone else's conversation. My 14 month old son was sitting in my lap drinking his milk and my husband was on the phone in his home office one room away. Little did I know that that very routine moment and that phone call were going to be etched in my mind as one of my most life changing memories.

As I told my husband the news I was still talking as if this were happening to someone else. It was only when my husband broke down into tears and we started calling our family and friends that it started to sink in that I was the one carrying a baby with Down Syndrome. Because we believe that all babies are a gift from God, we knew we would be keeping this baby. The real struggle was with accepting a gift we didn't consider one at the time. Intellectually, Jim and I both knew that God's ways are perfect and He always has our best interests at heart, but emotionally we needed to grieve the loss of our own worldly dreams of what we considered to be "the perfect daughter". This took some time.

My next step was to arm myself with as much information on Down Syndrome as possible. My brother-in-law,Carl, spent an entire afternoon the next day searching the internet and then faxing us (he lives in PA) 45 pages of information he had found. I found that I could read the factual stuff pretty easily and even the heartfelt stories weren't too bad, but I could not bring myself to look at the pictures just yet. I was really struggling with the whole idea that my daughter would look more like people with Down Syndrome than she would look like us. (In hindsight I realize this was my ignorance because Josi looks an awful lot like her Italian side of the family!) However, I finally got to the point where I had read all the information I wanted to read, made all the phone calls I was going to make, and had tapped into all the support resources I was going to investigate at that time. It was time to just be pregnant and get ready for our daughter the way I would any other baby.

In spite of the many ultrasounds and visits to Chapel Hill, my husband and I were definitely "healing" from the initial grieving process and anticipating our daughter's birth with more "normal" anxieties like whether we were going to have enough energy to handle two children under the age of two!! All the ultrasounds showed that our daughter was in wonderful health and would have none of the typical health problems related to Down Syndrome, so we felt very blessed by this prognosis. She did end up being delivered prematurely because of a condition called "hydropse" which is fluid around the lungs, but even with this sometimes fatal condition, Josi rose to the occasion and surprised all of us by leaving the hospital in half the amount of time predicted.

We named her Josephine Berkley Ferguson after her maternal grandmother and great-grandmother--two Italian women with strong faith and inner strength--something Josi has already exhibited in her 23 months with us. As parents, we still have our struggles in accepting certain things about life with Josi, but we have also seen how Josi is re-shaping our immediate and extended family for the better,as well as those who come into contact with her regularly or just at the grocery store. She has a smile that will warm even the most impatient shopper in the grocery line. She also has a temper that contradicts all the cliche remarks about how "good-natured these kinds of children are". We are thrilled to have Josi in our family and I even feel extra-special to be given the privilege of raising Josi because of the unique qualities she will bring to our lives that we may never have experienced otherwise.

Kristin

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