During my pregnancy with Kaleb and since I've had him so many people tell me how proud they are that I am so strong and I'm just amazing. I know I've said before but you do what you have to do, anyone can do it when you are pushed. I HAVE to be strong. When your child has an illness, disorder, different abilities, or any area where they need a little push in, you put on your big girl panties and take it head on. It's all instinctual.

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

3 thoughts:

Caleb's Journey

Absolutely beautiful Erin. Thank you for posting about our special day. I think Ashley is so amazing and I'm so proud of her. I'm blessed to have you all to walk this journey with. Love you


Great post!! Love the pictures too! XOXO!!


Thank you so much this was so sweet. It means so much that u all think so much of me. But just like you said in the begining we do it because we love our kids and we do what we have to its not like we picked it its just what we got dealt and we are making the best of it. I love the pictures btw thanks again Chontee I tell you I have no friends like my trisomy mommies I love oyu all so much. Also btw i reached out to my bio dads fiance from the time of his death. Learned some very interestng things I am so much like him personality wise as well. An I read the Heaven is for real book talk about rocking my world. LOVED IT Got so deep bible talk ready for you Jeanette <3 You all mean so much tome and I think your all soo amazing and find it even more amazing that u guys think im so amazing because to me I see it different but it makes me feel better knowing how you guys think of me. <3 I hope we can get togetehr again soon and not in a hospital! Your all so strong amazing inspiring thanks for being there for us and being the amazing ppl you all are I look up to you all!

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