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.

Spring Maiden

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. 

My Miracle

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.

My Jewel

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 of joy.

Then, everything seemed to go downhill. I could not understand why my “perfect” baby couldn’t suck on her bottle without choking or falling asleep, I couldn’t figure out why she was so different then my first baby. Everyone kept saying “Oh, she’s just a laid back little girl”, but for SOME reason in the back of my mind I knew it was more complicated then that. My entire pregnancy, I felt that something just was not right with the baby even though I had no clinical reason to feel this way. I had this panic in my gut the entire 9 months. When Michelle was a few days old, she started passing blood with her stool which lead me to take her into the emergency room because she was also crying inconsolably for hours straight. The emergency room physicians decided it was best to admit Michelle for further testing. They did not tell me that they suspected my perfect baby girl was not so “perfect”. We were told that our baby may have a disorder, maybe even a mild form of Down Syndrome. Our pediatrician assured us not to worry, he thought the kayrotype would come back negative. We were released and told we would be informed when the test results came in.

At Michelle’s two week well baby check up our world was crushed. Not only did “perfect” Michelle have a disorder, she had a rare disorder called Tetrasomy X Syndrome. The kicker was that our pediatrician had never heard of this condition. We were sent to Johns Hopkins Hospital to supposedly get the answers we so desperately needed. But, SURPRISE!! The Geneticist, this “specialist” we were looking up to was as stumped as everyone else. We were left on our own, I should say I was left on my own because my Husband was in denial. He did not want to hear that Michelle was anything but “normal and perfect”. After many doctor/specialist appointments we found that on top of Tetrasomy X Syndrome, Michelle has low muscle tone, a heart condition, developmental delays, her vision is more farsighted then most other children her age, she had to wear braces on her legs to correct the unnatural curve in her lower leg. As an infant, she had to be taught how to suck/swallow and chew because she was too weak to do it. I found an amazing organization called UNIQUE a group based out of England for families like me. I felt so relieved to see I was not alone anymore. They put me in touch with Cyndi Bradley and Kim Jenny who were running a group for Tetrasomy X and Pentasomy X families. The key to getting through a diagnosis such as this, is to have shoulders to lean on, to know you are not alone. Through this group I have found out more information on this disorder then any doctor or specialist could have given.

After time, and a lot of tears and emotional/physical pain I learned that I had to move on with my life for my daughters and myself. I left my husband and the life that was destroying me. Life is hard and will probably never be easy. But, you learn to deal. Your life as you knew it of dreaming about the future full of brightness for your child will never be the same. The letters IEP’s, IFSP’s, OT, ST, CT, PT, MRI’s, EKG’s, ECHO’s are part of your daily vocabulary. You begin to despise the word “normal” Your personal life evolves around doctor appointments, therapy sessions, hospital stays, meetings to discuss progress or the lack there of in the development of your child. Those books that you bought during your pregnancy telling you how your baby will develop, throw them away! Because your “differently abled” child is special, there is no book, no magazine, no “specialist” who can tell you what’s to come. You are the one and only professional for your special jewel.

I have only been the parent of a special child for a little short of three years. But, in that time, Michelle has taught me to love more then anyone could love, to cherish the good - healthy times. And, to always expect the unexpected. Do I still cry, and say “why me?”? YES, all time! But deep down in my heart I know that Michelle was given to me because I needed to learn some things that only this situation could teach. Someone more powerful then myself, or a doctor, or a therapist thought that I would be the right kind of mom to take care of Michelle and nurture her, so it is my job to make sure I do the best I can. I sacrifice a lot, but I can only hope that when my girls grow up, they will see what I did for them, and hopefully they will see that I did my best, tried my hardest, and loved them with everything in me even when I thought I just couldn’t take it anymore.

Angela

Mom of Michelle born 5/11/00 Tetrasomy X Syndrome

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.