In the beginning people asked me if I had the support I needed. I really didn't know what that meant. I was always a rather independent person. Ainsley came home from the hospital in December 2006 and rocked our world. Things that were once moderately difficult like, for example, grocery shopping with 2 young children, were now practically impossible given the amount of medical equipment I had to drag along. I was "lucky" that I was already a stay-at-home mom so I didn't have to quit my job. But the flip-side to that was the despair over the fact I never got a break from the overwhelming amount of care Ainsley (and my other two children) needed. I would have never made it without the internet pediatric tracheostomy support group I was, and still am, an active member of. I also received a lot of help transporting my older children to and from school, something that was very difficult due to Ainsley's medical issues. My sister would, and still does, come to my house and babysit my older kids when Ainsley has a surgery or doctor appointments.
In August 2008 after getting onto a Medicaid waiver for children with intense medical needs (Ainsley qualifies due to the trach and g-tube and the fact that she has no income) we were finally able to get a day nurse consistently to help out (our private insurance would not cover this necessity). Although we were approved to receive 10 hours a day of help 7 days a week we chose to get by with 2. For us that has made all the difference in the world. I can take care of things that are difficult to do with Ainsley (largely due to her need for suctioning and the fact that it is unsafe to drive her without a designated caregiver).
Support looks different for each person. We all need some help. Parents of children with special needs need it more than you can imagine. Offer your help. Accept help. If it takes a village to raise a child it takes a small city to raise a special needs child.
We are fortunate that Ainsley's medical costs are covered while she has a tracheostomy. Hopefully we will continue to be so fortunate. If you'd like to give money on Ainsley's behalf I would suggest a donation to http://www.tracheostomy.com/ , without them we would be lost. Or to http://www.worldcf.org/ who provides craniofacial surgeries to those who cannot otherwise afford the types of surgeries that Ainsley has needed.
