Naturally Beautiful Blog

In 2009 and 2010, during the month of December, I participated in the Giving is Awesome movement where I asked readers to nominate someone they felt would benefit and appreciate a free photo session.  There used to be a fabulous website where the photographers could sign up, and people could search to see who was participating in their area.  Unfortunately, that website is gone and the movement has pretty much disappeared.

I’m not letting that stop me!

I am changing things up a bit this year though.  I always found it difficult to select the recipient because the nominations were always very heartfelt and touching.  This year, I looked back at all the people who have become a part of my life and one person sticks out in my mind.  Although I have not met her in real life yet, we follow each other on Twitter and her story has really touched my heart.  Here is Tracey’s story about her 5th child, her son Jaxx:

Jaxx was born @39 weeks, typical pregnancy.  I had 4 Ultrasounds, 8 weeks, 18, 20 & 24. There were no markers visible for Downs Syndrome or AVSD (heart defect). I had the blood screening which also did not identify any risks for Downs Syndrome.

Labour was not going well, and I ended up having an emergency C-Section.  It was in the delivery room that the L&D nurse said to me “‘we think your baby might have Down Syndrome”. The words shocked me, I looked at my husband as if to say “what did she say?”. When my husband held him, all I could think about was how cute he was. How much he looked like my other kids, trying to see Down Syndrome in his face.

He was instantly taken to the NICU, and was being treated for a severe case of Jaundice. I heard the doctors discussing something about a heart murmur, but no one said anything to me. I think they were more concerned with straightening out his bilirubin because he was really sick. When Jaxx was approximately 2 weeks old, the Cardiologist gave me the news about his heart. He had an AVSD, basically this is two holes and deformed valves in his heart. He would definitely need surgery to repair his heart. He spent the first 6 weeks of his life in the NICU, and has been in and out of hospital ever since.

On September 13th, Jaxx had an AVSD repair. He suffered complications from the procedure, a Chylothorax and a partially paralyzed diaphragm. He was finally discharged on October 11th. The surgery pretty much repaired his heart, but he still has a small hole and a leaky valve.

During his stay in the NICU, I noticed that his pupils seemed a little cloudy. Unfortunately with all of his other problems he fell through the cracks, they neglected to give him an eye test. At his first pediatrician appt. I ask ‘the Dr. to check his eyes. She found no red reflection, and suspected cataracts. Jaxx was sent to an ophthalmologist, where his cataracts were confirmed. He has a fully ripe cataract in his right eye, and a partial one in the left. Which means he has no sight in one eye, and very limited sight in the other.  He will have to have surgery to remove the cataracts in January.

I’ve been following Jaxx’s “adventures” through Tracey and in December, offered her this “Giving is Awesome” photo session.  I’m so happy that she agreed!  We are going to schedule something later this year, once the weather has warmed up.  I can’t wait to meet Jaxx, his parents and his brothers and sisters!

I know Jaxx is going to have a lot of struggles to overcome in his life, but with such a great mom like Tracey, I know he’ll beat the odds as best as he can!

If you would like to follow Tracey on Twitter, she can be found at http://twitter.com/#!/Traceybaby.  I’m sure she will appreciate the supportive words that will come her way!