We hope this letter finds you well and enjoying this blessed holiday season. The girls are counting down the days until Christmas! Despite our efforts to keep the holiday focused on our Lord’s birth, I have to admit they are the most excited about presents and a reprieve from school. ☺
Emery
 |
| From Captiva Island Sunset Photos |
Her personality has always been very dichotomous and we knew she would either accept her new regimen with grace or she would fight us at every step. God blessed us all when Emery rapidly learned to take things in stride. She was undergoing multiple injections per day along with finger sticks every 2 hours to make sure her blood sugar was in control. She quickly decided she wanted to be the one to prick her finger and just before her 5th birthday started doing this on her own.
I ended up quitting my part time job and pulling Emery out of preschool as the needs were overwhelming at first. In March she started using the Omnipod, which is a tubeless pump, and it has afforded her convenience and better control without the daily shots. She only once has mourned her fate. She came to me crying and said, “Mom I just realized I will never know what it feels like to NOT have something stuck on my back!” It was a hard moment for us both, but we are thankful that she can live a long, happy, healthy life if we are vigilant in her care.
Emery is now in half day Kindergarten, doing really well. She is a silly little girl, and her intelligence weaves itself into her humor. I will miss my buddy next year when she is in school full time. She loves beyond measure and her friends and family are given tight hugs and multiple compliments when they are in her presence. She still adores babies and recently asked me if we could please adopt, “because you know I would take care of the baby all of the time!”. She’s getting a lifelike doll for Christmas!
Marley
 |
| From Captiva Island Sunset Photos |
She is extremely loyal and in 2nd grade still has her best friend from Kindergarten, even though they are no longer in the same class. She forwent her birthday party this year because she was afraid that her best friend, who is shy, would not be comfortable in a large group of people. So I took the two girls and we did whatever they wanted for the day. She had a blast and probably made out better than having a party, but how many 7 year olds do you know who would put the needs of their friend first? We are so proud of who Marley is! I think that is a great way to describe her actually, she knows JUST who she is and is comfortable and happy being Marley!
She took gymnastics in the spring and started playing soccer too. Marley is still obsessed with dogs and has recently started calling herself the dog whisperer and bought bones at the store to train our dog. She is still tiny and many people think that she and Emery are twins. This never bothers Marley, another testament to her confidence and love of her life. She is a blessing beyond measure to all of us.
Tarenne
 |
| From Captiva Island Sunset Photos |
She was taking riding lessons with a friend until we found out that she has atlantoaxial instability. This is a neck condition that is more common in people who have Down syndrome. It can mean a fall will cause paralysis and so riding is out for our girl. We will stick with dancing and swimming as her extracurricular activities.
This instability came as a surprise as previous x-rays had not shown its presence. We were visiting Shriner’s hospital to treat T’s scoliosis when it was discovered. Yep, that’s right, our girl is now dealing with scoliosis on top of her developmental delays and celiac disease. She is being treated with a pink night brace which she has named Bunny and has had everyone in her life sign. She tried to leave it in the examination room when the doctor told her it was hers to keep. She quipped, “NO, I don’t want it…. REALLY!” She has just had it 10 days and is not quite used to it, but doesn’t complain as much as most of us would if we had to sleep curved encompassed in a rigid plastic contraption. Her disposition, strength, and determination continue to teach our family daily. If only every family had the gift of Down syndrome in their lives!
She loves school this year and has made several good friends. She reads beautifully, has trouble with math, adores her teachers and most mornings runs into school. She has become quite a flirt and will bat her eyes at cute men who cross her path, while placing her hands over her heart. Occasionally she will even get down on her knees and propose to them. Mostly though she wants to marry Kevin Jonas. She has private concerts in her room, talks to her “boys” whose posters adorn her walls, and makes web shows like I-Carly (a TV show) and her sister Darrah.
Darrah
 |
| From Captiva Island Sunset Photos |
She even made a video trying to persuade Joe to allow her to have a cell phone. While he was unequivocally impressed he remains unswayed, and much to her dismay maintains his position that she is too young. This is the bane of her existence and she would welcome any harassment you would like to provide on her behalf. Ha ha!
We made her choose one activity to focus on this semester as we tried to cut back on the girls’ schedules and so she chose to drop guitar lessons. She still plays select soccer and travels around the state to play. We love to watch her and really enjoy being with the families on her team.
She started middle school this year and while it’s hard for us to accept that she is growing up, we can’t deny it as we look at our little girl who is quickly becoming a beautiful teenager. She is still as sweet as ever, and is my right hand girl around our home. She continues to be placed in honors classes and does well maintaining a balance in her life. God has blessed her with so many talents and we are thankful that she is so down to earth and realizes that all good things are from Him.
Us
 |
| From Captiva Island Sunset Photos |
In Him, Nicole for the Maher Family
