Our daughter Emma was born on November 20,2002 in Red Deer, Alberta, weighing 5 pounds 12 ounces. The pregnancy went great even though she was breech and came by c-section. She was sent to the Intensive Care Unit for the first 24 hours because she had an excessive amount of mucus in her stomach and lungs, which was a struggle for her for the next several months.
“Emma has taught us so much about life,
One of the first differences we noticed with our little Emma was her big, broad thumbs but thought nothing of it at the time. As the months went by we noticed she was very weak and she had a cry like a puppy’s wine. Also, when Emma cried, there were no tears at all for about six months. She ate very poorly and gagged and threw up frequently. At one point, the doctor, observing that Emma was quite small, said that she was not growing adequately and was failing to thrive. When she was about eleven months old she experienced a great deal of head shaking and would look up at the ceiling while shaking her head. The doctor's thought that they were seizers and tried controlling them with medicine. It took a long time for her to eat solids because she would always gag or choke due to her sensitivity level. She was behind on almost everything especially understanding and speech.
As she grew up a little and she was almost one we thought she was so different from our other children, there was just something that was really special about her. She went through many tests and was seen by many special doctors and the result of it was Emma was diagnosed with Rubinstein-Taybi Syndrome. That didn't surprise us because we were looking up different syndromes on the Internet and as soon as we saw the kids on our pages we were in tears. We said, “Wow, there's Emma's family.” She just looked like so many of the kids. From that point on, we were convinced that Emma had Rubinstein-Taybi Syndrome.
Emma has taught us so much about life, about what's really important and how precious it really is. Her personality is amazing. Emma loves to dance to music, which is one of her favorite things to do. She tries to do a lot of different kinds of dancing to different kinds of music. She has us in tears laughing and brings so much warmth to our hearts. Her spirit it so joyful and gentle and she is such a little angel.
On the other hand, Emma is always seeking lots of attention and her behavior can get quite out-of-hand. That's where Grandma, Emma's best friend, comes in. Grandma helps look after Emma so we can get the things done that we need to do. Life would be very challenging for us if we didn't have Grandma on the team.
Emma is currently receiving a lot of therapy for her speech as she can only say a few words. She understands very well now and her seizures did stop about half a year ago. She also sees an occupational and physiotherapist for her gross and fine motor skills and she has come a long way in those areas. She loves food but we have to be very careful because of the lack of feeling inside her mouth. Emma also has hypo plastic enamel on all of her back molars, which causes them to decay rapidly. She will be having surgery on her teeth this month to fix and protect her teeth.
Emma is teaching her big sister and two big brothers about patience. She always wants what they have and will kick up a big storm just to get her own way. They love her so much and they’ve sure learned a lot from her. They will be well trained, by the time they grow up, about special needs people.
We feel God has given us someone so special and so precious. We feel honoured and blessed to have Emma as our daughter. If we had a chance to change Emma in any way, we would not choose to do so. We feel that God created Emma exactly the way she was meant to be. We will continue to learn and grow with her and pray that she will live a long life, full of joy and adventure.
We would like to extend a thank you to all of our family, friends and therapists for all the support. Life wouldn’t be the same without all of you. May God Bless you always.
Please feel free to contact us anytime at firstname.lastname@example.org
Chris, Megan, Ashley, William, Kyle and Emma Dade