Point of View
The Tetrasomy/Pentasomy Parent Support Group would like to invite you to share your ‘Point of View’ on raising a child with special needs. Share your challenges, fears, and special people who have helped you along the way. The intention of this page is to share our common struggles as parents, mentors, and professionals. We welcome all points of view and opinions.
Poem By Katy Forrest, tetra x age 20 A new dawn rises clear skies all around the birds chirp and sing for the birth of the first day of spring. The sun shines brightly upon fresh green leaves wild flowers bloom in the woods as different kinds of blossom awaken upon the new branches of the trees. In the south is a river the breeze is warm and at it’s best silver waterfalls shimmer in the sunlight pixies, dwarfs and nymphs come out to cause mischief before their beloved spring ends. Deep in the woods within the flower beds lies a beautiful faery with golden hair. She is the princess of the faeries She is known as a nymph to some She is the spring maiden ruler of one of the four seasons her days of work have begun. Her eyes are lilac her dress is baby pink she is the most innocent of the seasons she loves everyone and everything. She is an inspiration A season of mythical life Unicorns roam the meadows Her and the unicorns share a mystical love. While she flies over the dark lands and showers them with love animals meet with each other and mate like they should. The ice maiden had destroyed everything that the Spring maiden loved though winter wasn’t her real enemy she still disliked the ice maiden so much. Clouds appear in the sky and bring the land a light shower of rain the animals flee and find shelter the Unicorns bathe in the spring rain. The rain showers pretty fast raindrops land on her wings luckily she can still fly she finishes her work before she falls from the sky. The sun peeks through a cloud slowly brightening up the land The spring maiden lands safety on a white fluffy cloud. A rainbow is created faeries dance upon it unicorn foals neigh in delight as the spring festivable begins under the rainbow’s light. A beautiful sunset rises after the banquet is done it is warning that spring is over and summer must come. As the night comes in the heat rises up the spring maiden is scared she does her best to hide herself. It gets hotter by the minute her skin burns from the inside out she hasn’t got long to live but she hopes she will die quickly before her sister sees her. Her wings begin break like the leaves in autumn her hair burns away until her head is bald and rotten. Her body is completely red and as hot as hell but it hasn’t stopped yet every second that she hangs on too makes her body get even hotter. In the sky right beside the moon hangs a bright blinding star shattering her view. In middle the of the star her sister comes into view her sister is the most terrifying creature out all of the sisterhood. Spring is a faery Autumn is an enchantress Winter is a spirit Summer is the worst she is a demon. The Summer maiden dives to the ground she grabs her sister’s heart Her sister’s insides fry up where she was touched. The Spring maiden bursts into flames her death finally over next year she’ll be resurrected again until then her season is over.
January, 2003 - On May 19, 2000 I gave birth at 32 weeks gestation to our miracle- Hannah Elizabeth. Weighing only 4 pounds and 8 ounces, we couldn’t believe how healthy she was. She was in transition for about 2 hours before coming back to the room with me where she was able to stay the rest of the time. The pediatrician that checked her out in the nursery couldn’t understand why she was in the nursery and not in the special care nursery with the other small babies. She was only half the size of the other babies. He checked her over and said she was just perfect, small but perfect. We took our bundle of joy home 2 days later.
Those first days were hard because she was so small, but I had already had a premature baby back in 1996, Michaella , Hannah’s big sister. I thought I knew all the rules, but boy was I wrong. Hannah could not nurse properly unless we used preemie nipples and watched her closely for choking. At one time they thought she had reflux because she was choking while trying to learn to swallow. The reflux meds didn’t work and we learned that it was her swallowing not reflux.
Hannah’s first year was very hard. She kept getting all kinds of broncular infections including RSV and others. We found out at her 2-month check-up that she had a heart murmur. During her first year hardly any milestones were ever accomplished on time. The doctors continued to tell us that it was because she was premature. My other daughter didn’t have the same issues, so of course I always wondered what the problem was. At 18 months Hannah was diagnosed with hypotonia, low muscle tone. She would still not bear weight on her feet so I insisted getting her evaluated and she was at a 9-month level. After beginning therapy and talking with her therapist and a social worker, they convinced me to get further testing done on her. Just a couple of months before Hannah turned 2, our little miracle was diagnosed with Tetrasomy X. We were in shock; I think I cried for 3 solid days. All I was told, over the phone was that she would be mentally retarded and that the disorder is very rare. I turned to the Internet for help and found the Unique Group and then was linked to the Tetrasomy/Pentasomy Group. What a miracle that was. I found help and relief from other parents out there just like us.
Since then our life has gotten much better with many parents to talk to and learn from. I have become a contact parent for the Unique Support Group and for Parents to Parents of Georgia. I have talked with many families since then with children with many different disorders. Some of them are so bad that I hate to say it but I feel like we have been blessed, that Hannah only has Tetrasomy X. There are so many more things that she could have had. My heart breaks that she has to be different but God doesn’t put more on us than we can handle. I still ask why us?? But then I realize how much joy Hannah has brought into our lives and how strong it has made me. Do I enjoy trying to juggle 3 therapies each week and all the extra doctors appointments? No of course not, but I wouldn’t have it any other way. Hannah is a true miracle in our life. The hardest thing we deal with on a daily basis is trying to remember that Hannah’s sister, Michaella needs special attention to. With all we have going on, it is easy to forget how sensitive her feelings are. To all you parents with special children, my advice is to make special times for all your children. Not just the special ones. They are all a gift from God and need to be treasured just the same. Count your blessings for what you do have. It can be taken away from you so fast. Thank God for each and every day and each and every minute. Thank Him for the health of your children and the time you are given to share with them. Hardships are not easy but they are better than not knowing what you would have missed without them. No matter how different our life has become, there actually does come a day when it seems "Normal" to us.
I am a 25 year old
divorced mom of two beautiful daughters. My oldest , Erika, was born February
9, 1998, she was diagnosed with Allergy induced Asthma at 15 months of age
after a severe attack came close to taking her away from us. At the time, I
thought “Why me?”, “Why my daughter?”. Little did I know that this was simply
a test that God (or whomever) felt I needed to go through. This was only a
trial run to prepare me for what was ahead in my life. May 11, 2000 I gave
birth to a “perfect” blonde haired, blue eyed angel we named Michelle. I had
the text book labor I was able to give birth completely drug free as I wished.
I had that euphoric high that almost all mothers feel after giving birth. We
were sent home with a clean bill of health and our beautiful 6lb 10oz bundle
August 9, 2002 - When becoming parents you dream of this ‘perfect’ child. The one who looks perfect in every way. Smartest kid in the class, you know all the typical things we all compete with other parents about. Well we didn’t get that. We got Kapri. Don’t get me wrong, Kapri is perfect. At least in my eyes. But she is no walk in the park. Kapri keeps me and her dad BUSY! Never a chance to exhale. We never know what is terrible twos and what is the Tetrasomy X/ Kapri. Kapri was born with not only Tetrasomy X, but also Hypoplastic Right Heart Syndrome, a rare congenital heart disorder. We knew ahead of birth about the heart defect, but was never prepared for the roller coaster ride we have been on for the past three years. Once we think we are safe to go on to the normal parent issues, or deal with the developmental side of Kapri’s syndrome, we face a new diagnosis or problem. We tend to make jokes about all our hospital stays. Kapri tends to get a little homesick from the hospital if we aren’t there at least once a month, and if she is healthy heart-wise she finds something else to keep us tied up with. This is our "Normal". Greg and I are both kids ourselves, me being 21 and he 23. We thought it was going to be scary raising a "normal" child, but having to face what we do on a daily basis, I can’t imagine having a "normal" child. Kapri makes our life a challenge. We have our struggles financially like all parents with medically fragile children, and the struggles of trying to understand her. But I would not change our life with her for anything in the world. The one thing I would change would be of course her heart defect and the pain it causes her. But in all honesty, Kapri is a very smart and happy child. She is "normal". Kapri loves adventure, and takes her parents along for the ride. We learn a new thing everyday. And our goals get bigger and bigger each day.