These past few months have been such a struggle to stay positive and I wanted to share our story. Our daughter, Serenity, showed signs of Torticollis pretty much right at birth. At this time we were told this is something quite common and is nothing to worry about, and that her overall "scrunchiness" and head tilt could be a result of her departure from the tight quarters in my belly. After about a week at home with Serenity, we noticed that she'd always seemed to have her head tilted to that one side, even when laying flat on her back. Despite trying to convince ourselves that there was nothing wrong, we realized our baby had this condition, and it wasn't something that was just going to go away on its own. At her 2 week appointment with the pediatrician, we were able to diagnosed her with congenital muscular torticollis, and our journey began; we started taking her to physical therapy once a week.

There is nothing more frustrating as a parent than wanting so badly to help your child but not knowing how to. I started by desperately scouring the internet trying to understand this condition. Between the endless googling, facebook groups, and doctors appointments, I could never seem to find someone who could just give me reassurance. I wanted encouragement; hope. I wanted someone so badly to tell me that they had been where we were once, and that they had come out on top. I just wanted to know that I wasn't alone, and my efforts weren't in vain. Even though 1 in 250 babies have Torticollis, this condition still seems to be this mysterious black hole. No one can give straight-forward answers, or guarantee it will get better. For those unfamiliar with this condition, here is what we learned;

" Congenital muscular torticollis, also called twisted neck or wryneck, Is a condition in which an infant holds his or her head tilted to one side and has difficulty turning the head. In congenital torticollis, the muscle that extends down the side of the neck -the sternocleidomastoid muscle- is tight and shortened... The cause of congenital muscular torticollis is unknown, however it may be related to abnormal positioning or crowding of the baby while in the uterus. This results in an injury to the neck muscle that scars as it heals the amount of scar in the muscle determines how tight the muscle is."

In our case, our daughter was most likely scrunched up in my belly with her head cranked to one side for so long that it affected the development of her left Sternocleidomastoid muscle. As a result, we have to take action to avoid abnormal head growth, delayed motor skill development, and issues with her balance that could escalate into larger issues regarding her ability to eat, wright, and function normally. If left untreated, this could affect many basic tasks, and my baby's everyday life; pretty much anything involving holding her head up.

At physical therapy we learned stretches and exercises we would need to do at home with her and we started off stretching her 10 to 12 times a day. Our physical therapist was happy with our commitment to help her, and although this was one of the most severe cases she had seen she expected her to have full range of motion by 3 to 6 months, or by the time she became mobile. As of now she's 4 months old. We are going to physical therapy twice a week now. Despite feeling like I'm spending all day every day stretching my child and obsessing over her head positioning, I have yet to see my little girl straighten her head on her own. Due to a lack of results we are seeing, we have started ruling out other potential underlying problems that might be causing torticollis. She has had an appointment with Phoenix children's hospital, where we met with more specialists to discuss other options. Well at this point, there is nothing new for us to try. When she is 6 months old, she will be taken in again to Phoenix Childrens Hospital where we will go ahead and meet with the Neurosurgeon and start with Botox injections to try to relax the muscle, so that we can continue with the stretches and hopefully see additional progress. She will also be getting a neck support which she will wear to keep her neck in an upright position.

We have spent the majority of our baby's life doing exercises and taking her to appointments, instead of snuggling and enjoying our time with her. I feel stuck and impatient. Her tilt is still so strong at times it seems like all our efforts have been for nothing. We continue to search for help and answers but at this point it seems like everyone is just telling us to try all of the same things we have already been trying. All I want is to take my baby for a walk in her stroller or play with her on the floor without worrying every second about adjusting her head, and whether or not I am doing enough for her. I just want to be able to go back to work to make money to provide for her. It's been difficult to keep patience. Some days I lie my baby girl down for a nap, and lie down on my own bed and cry. I cry out of frustration, confusion, and out of feelings of pure helplessness. I ask God why we had to go through this and beg him to just heal our baby's neck so that I can be a normal mom. What seems to be getting me through all the this, is knowing that although this condition is frustrating, I still have a healthy, happy, and thriving child. Even though one day I hope that I wake up to a baby whose neck has been miraculously healed, I know that this will not happen, and we just have to have the strength to keep on fighting.

I have created a GoFundMe in order for us to continue to pay for treatments and doctors, as well as be able to pay bills while I continue to not work in order to provide at home care. 

"Photographer: www.instagram.com/creativeedgephotographyAZ"