Before I had Abby, I remember feeling pity for parents of special needs kids, thinking, Oh, they have it so rough! Those poor people! But you know what? I know their secret now! 
WE are the lucky ones!!
My daughter Abigail Elizabeth Joy was diagnosed in utero with Pierre Robin’s Sequence, which is characterized by a small jaw and cleft soft palate. In the following weeks, she stopped being able to swallow, which caused my fluid levels to skyrocket and send me into labor. I was hospitalized at 29 weeks for five weeks on heavy amounts of drugs to keep my labor under control.
When Abby was born at 34 weeks on October 22, 2010, a routine NICU xray found that her ribs were in multiple pieces. Further examination found many additional anomalies that the geneticist was so kind to point out. When Abby was less than 12 hours old, she was diagnosed with Cerebrocostomandibular Syndrome. This syndrome is characterized by a small jaw, rib anomalies, and brain abnormalities. We were terrified of the unknown, and the doctors gave us very little hope. If she lived, they said she would not be much more than a vegetable.
There have been only approximately 65 diagnosed cases of CCMS, and the vast majority don’t make it out of the NICU. Of those that do get to go home, most die before their first birthday. Those that defy the odds blaze their own trail, because there haven’t been enough to do long-term case studies on. There are currently 10 known children living with CCMS in the world. I’m thankful to have connected with the families of most of them!
We prayed, cried, pleaded, and loved our girl until it hurt. We knew that we served a God who was bigger than statistics and that He had the power to heal Abby. The doctors continued to give us what they felt was the cold, hard, truth: she probably wasn’t going to make it. Little did our doctors know that Abby was born a fighter! After an emergency tracheostomy, we noticed immediate improvements in her breathing. Abby continued to progress and won the hearts of everyone she met! She came home to us at 12 weeks old and has changed our lives forever! Abby is one of the sassiest, spunkiest girls I have ever met.
My “vegetable” is cognitively right where she should be. She signs to communicate and her receptive language is awesome! At 15 months, she can crawl, pull up on furniture, cruise, and walk holding onto our hands or a push walker. We fully expect her to be walking on her own by 18 months, and we’ll be right there cheering her on when she does! 
Medically, Abby is doing great. Her ribs are calcifying and her sternum is now in tact. If things continue to progress, she will not need surgery. Her spine, which was curved and hunched at birth, is now completely straight. Her palate was repaired and her tiny airway is growing. While Abby came home on a ventilator 24/7, she now only uses it at night. The plan is for us to kick the vent out for good this summer! My girl is truly a miracle and we are so thankful that God chose to heal her! 
Abby gets speech services, occupational therapy, physical therapy, and feeding therapy. We have 12 specialists we see on a regular basis and usually have at least one doctor’s appointment a week at a hospital that is 2 hours away. But you know what? I wouldn’t change it for the world! Having my daughter and watching her grow and develop is worth all of the stress. And I can certainly say that our life is not boring!
I have found so many supportive groups for special needs families, but I really love MOM (Moms of Miracles) and Tracheostomy on Facebook. They are both really helpful and it’s so nice to have people who understand what you are going through! Because there are so few people with Abby’s syndrome, there’s no support group for it. Therefore, I started a Facebook group for anyone dealing with a rare syndrome called “Rare Love.” While we don’t share the same diagnoses, we do all yearn to have people who understand our concerns, heartaches, and frustrations! It’s been really helpful to have people who share our life!
If you’re just starting this wonderful (and it really is wonderful! Just wait and see!) journey of being a parent to a child of special needs, remember this: Your child’s diagnosis does not define him or her. There is LIFE after a diagnosis! Although the weight you carrying may seem overwhelming, make a constant choice to Choose Joy in every situation. Cherish the little day-to-day things because they will become the precious memories you will look back on in the tough times.
Abby’s Mommy, Julie, blogs about her journey at Life As A Leach
