Such a lonely road

I had an over abundance of support while pregnant.  Friends and family were supportive, excited and were looking forward to the same thing we were...a healthy baby girl. Well...thats not the plan the powers that be had for us apparently. 
As the days, weeks, and months passed as Jaylyn's diagnoses began to unfold, it seemed to scare people away. I even went so far as to post a Facebook status explaining and apologizing like an asshole! I explained that due to our schedules, Jaylyn's appointments and therapies that we just cant pack up and go to cater to everyone else that wants to see her. I extended an open invitation to anyone who wants to be in her life. No one came. No one called. We even got stood up a few times. And some that chose to reach out, were not exactly doing so out of concern. I was told I post way too many pics of my baby girl. I was also questioned as to whether or not Jaylyn's diagnosis and prognosis were legit.  Someone is an over paranoid twat that watched 1 too many episodes of "Catfish".  Its all good, how could we possibly understand what being busy is like, let alone deserve a phone call or text saying you aren't coming?  Being that we are a 1 vehicle household and I am the sole driver, even my days off are not my own. I am responsible for getting 5 people to work, school, practices,  appointments, etc . I couldn't go anywhere or visit my family in New York even if I wanted to, unless of course I can squeeze it into the window of time before my next taxi services are needed. I am by no means complaining. After all, even Jays days off are often arranged to accompany me on this, that or the other appointment.  Jaylyn only gets physical therapy once a week. She will be starting other therapies in the very near future, which will be on other days of the week. For the next 3 years that she is under Early Intervention services, this will be my life. Most people sleep more in a night than I average in a week. So I do like to unwind, relax, spend time with my family and maybe have a lazy day where I sleep more that a couple hours.  Social media support groups are my social life. Sometimes I can go days without speaking to another adult human being. Because Jay and I work crazy conflicting hours, I have to settle for cyber support, cyber hugs and an occasional kissy face emoji. Im not even sure wtf an emoji really is. All that I do know is I love this little girl with all my heart and I will do anything and everything I can for her. That includes advocating and educating. That includes explaining that just because Jaylyn "looks healthy", it does not mean that she is. Do not judge a book by its cover based on a few smiling pics of my baby. Do not down play the severity of something you cant possibly understand. We are still trying to understand ourselves. We are still trying to accept the prognosis. I am honestly still in awe over the outpouring of support we have gotten from complete strangers, friends from high school I hadn't seen....well, since high school. We are still working on collecting funds for her bills and I appreciate all thats been done and hope to one day pay it forward to another family with a special needs child. All the cyber aupport and love in the world absolutely cannot replace a real life hug.