Atlanta, Georgia (GA) - Translocation 13q / 15q

9-1-07

Here is a photo of Rebecca's graduation. She actually wore a red robe with a black stole on graduation day, but the photographer who did her senior pictures provided this robe for the professional sitting, and I loved this photo.

The school also gave Rebecca a snow globe on a silver base with a picture of her in this white robe inside the globe and a nameplate engraved with her name and date of graduation affixed to the base. The base is a music box, which plays "Pomp and Circumstance."

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Update 8-1-07

Rebecca's 21st birthday is approaching!
The big day is August 3rd. Rebecca is excited, and so are we. We already took her to see the movie Ratatouille and out to eat, because she and I are traveling out-of-town in a couple of days to another family wedding (the third scheduled for this summer). We thank God for Rebecca and the blessing that she is to our family and friends!

Glenda Parkman, Wife to Mike (my sweetheart), Mom to Rebecca (13q/15q translocation, almost 21-years-old) and Aaron (18-years-old and preparing to enter GA TECH), and "Grandma" to Toby (our pup)

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8-3-05

What a great name for this web site site! I have a daughter with trisomy 13q. She also has trisomy for a portion of the long (q) arm of chromosome 15. These two "q" arms are attached to make an extra chromosome in each cell of Rebecca's body. This is called a translocation. (13q/15q). She is almost 20. Her whole life is a testimony to the faithfulness of our wonderful Father in Heaven!

My whole pregnancy with Rebecca was a challenge (very high blood pressure, horrible nausea, abdominal cramping, etc.). I just kept praying for my health and the health of my baby. I was hospitalized 3 days before Rebecca's birth, which gave me plenty of time to pray and to meditate on God's Word. I was especially drawn to Psalm 57:2 - "I will cry out to God Most High, To God who performs all things for me�" When my water broke and was stained with meconium, God had already prepared me for the next hours of contractions every 30 -90 seconds. (It was like nothing but third - stage labor the whole time.) Though in pain, I can honestly say that I felt the peace of God so strongly in and around me that I later described it as being so thick and tangible that I could have reached out and grasped fistfuls of it!

Rebecca was born with a craniofacial anomaly called Trigonocephaly, an extra toe on her right foot, strawberry birthmarks, and a funny sounding heart, which the pediatric cardiologist described as having one wall thicker than the other. For some reason ( maybe a blessing in disguise! ) the doctors did not seem to connect these anomalies to the presence of a syndrome. So, they proceeded to treat each issue separately. After the cardiologist had left my room, I remember praying a one- sentence prayer: "Oh Father, I think I can handle the ' head thing,' but I don't think I can handle the ' heart thing.' As if I could "handle" any of it! Six weeks later, a repeat echocardiogram showed that Rebecca's heart problem had resolved. I was told that this sometimes happened with preemies, but as I had sat waiting for Rebecca's repeat echocardiogram to begin, I had heard the doctor dictating a letter. She had told me when she finished that it was to the parents of a baby who was recovering from a surgery to correct the same heart condition Rebecca had been born with!

Rebecca cried for hours at a time when we took her home. Mike (my wonderful husband of 21 years) and I rocked her, sang to her, carried her, patted her, and dosed her with baby antacid drops until we thought WE'D drop. She had difficulty nursing, arched her back when I tried to cuddle her, and had difficulty making eye contact. Mike and I just "stayed in her face" constantly. Slowly, her nursing became better, her responsiveness to us became better, and she began to meet developmental milestones.

Then came the five-and-a-half hour craniofacial surgery when she was eight-and-a-half months old. The recovery period was months long, but God helped us through! A missionary nurse, who was between assignments, came to live with us for three weeks shortly after Rebecca's surgery while she waited for her travel arrangements to be finalized. She had been a neonatal nurse for several years.

Sweet brother Aaron was born when Rebecca was 2 years and 9 months old. Aaron walked and talked early and would not allow Rebecca to ignore him, so he was greatly used by God in breaking down the wall she kept between herself and most people. Sheri, a college student who lived with us for a few years, waited months before Rebecca would talk to her. She then became one of Rebecca's favorite people.

Rebecca was enrolled in kindergarten when she was five years old. For reasons too numerous to mention here, this did not work out. I took Rebecca home, began homeschooling her, and continued doing so until June of this year (2005). Until Rebecca had her strabismus surgery (shortly after we made the decision to homeschool her) she kept one eye closed during her reading lessons. We did not attempt writing yet because of the strabismus and because her hands were very weak, especially her thumbs. After the eye surgery, I bought her a MagnaDoodle (magnetic drawing board). By holding the stylus and pressing very lightly on the board, dark marks could be made. When we made the switch from the MagnaDoodle to paper, her hands were still weak, the pencil rubbing against paper created too much friction (causing her to continually drop the pencil), and her ability to copy letters by simply looking at them was almost nonexistent. I gave this some thought and came up with the following: 1) placing the pencil properly in her hand, 2) holding my hand firmly around her hand, and 3) saying clue words regarding the letter's shape as I wrote the letter with her. As her hands grew stronger, I let her move through the writing process as I lightly covered her hand with my own. Then I held her wrist, then her elbow. Why? This touch gave her confidence. After about a year and a half, she could print on her own.

We still had no idea about the trisomy. Why, you may ask? Because, though a lot of her conversational speech was parroted phrases from books and tapes, the fact that she could talk (and walk and read and write) led doctors away from a trisomy 13 diagnosis.

At about age 8, Rebecca began developing a noticeable spinal curvature.

At age 11 we sought help for the second time with Rebecca's seeming inability to get a complete night's sleep. She had never been able to develop a sleep pattern. The doctor who ordered her sleep study was a pulmonologist at a major children's hospital and was interested in her medical history. He stated that it seemed to indicate some sort of a syndrome and recommended two genetic tests. The results surprised the geneticist, who believed that Rebecca probably had something called Williams Syndrome.

Now that I've written my novel, I'll skip to the present! Rebecca has real conversations with us at this point, especially if they involve church or baseball, her two favorite things. She still has trouble forcing herself to make eye contact with people but is improving. Her favorite books are The Little House books, American Girl books, and books about baseball players. She LOVES praise and worship time in church and sings with such feeling! She says that her favorite song is the one that goes: "My life is in You, Lord./ My hope is in You, Lord./ My strength is in You, Lord, in You it's in You�" She plays on a special needs baseball team. She recently asked if she'd ever be able to drive like her 16 year old brother and asked if she could get a pink car. Even though she presently functions more like a middle to upper elementary - schooler, I won't say, "Not gonna happen," because only God knows!

She is my precious love!
Thanks for listening. I've never written about this to anyone before.

Glenda Parkman
 

Younger Sibling - Aaron is Rebecca's younger brother.