However, I recently met one of my dear "Facebook friends" in person, Ashley. And now I know that there is real strength out there. She has been through so much. I'm not sure if I could have the kind of strength she has. She has a Trisomy 18 daughter (Miss Mariah), is only 19 years old (actually 20 years tomorrow), and is a SINGLE MOM...living on her own. She also doesn't have the best support from family.
She is a pillar of strength to me. I am so lucky in that I have my husband, my older son to keep me wacky, and pretty good family support. I just don't know how she does it.
Recently her daughter became very sick and was transported to an Orlando area children's hospital. I met up with two more dear special needs mommies and we went and visited Ashley and Mariah. Ashley is so good with Mariah. Due to Mariah having Trisomy 18 any little sickness can be the difference between life and death, she is currently in the Pediactric ICU, but is doing much better. Mariah has a feeding tube and has a trach. Kaleb has never had either and to see her move around them in ease and know what to do, was just amazing. When the nurse came by and said she needed to start Mariah on a feed, Ashley quickly responded she would do it, knew the size of her trach, and really knew a lot more in some areas than the nurses did.
Obviously if you have a child with medical devices you are going to learn these, but I never have had to...and I thank God for that. It was just breathtaking watching her take charge and know every little thing about her daughter and her medical care, especially at the age of 19 years old. I believe she had Mariah at the age of 16 or 17 (ahhh I can't remember) and having a baby for ANY teen mom, especially a single teen mom is really difficult. But to be a single teen mom with a child with special needs, especially Trisomy 18...and SUCCEED at being a wonderful mother...that's truly amazing.
I'm so glad to call Ashley a friend and know that we live closer than most Trisomy mommies so we can continue to support each other in our journeys. It also doesn't hurt to have our other wonderful mommies Jeannette and Chontee. After spending time with Ashley and Mariah in their PICU room we went downstairs to the cafeteria and sat around a big round table. We talked for what seemed to be hours. It was wonderful. We ALL cried. People around us must have thought we were nuts, but it did help being in a hospital I guess. It's so nice to be around others who truly understand what you are going through and they don't stop talking to you because you are doing things that they aren't doing or understand.
I love being a special needs mommy and I am so glad to know the wonderful people that I do, especially Ashley and Mariah!
By the way...
Happy Trisomy Awareness Month