Strength.

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

;) 

Damn You Trisomy

I've been mad lately. Not at anyone person or specialist but at Trisomy in general. There is so little known about Trisomy and it's so frustrating. Every new diagnosis that my son gets I wonder if it has to do with Trisomy or something seperate that if he was born without Trisomy he would still have. This has been a very rough past couple of months.

Kaleb has been diagnosed with moderate hearing loss, some type of blood disorder, is very delayed, his stomach is not working properly, his feet are a whole 'nother issue, anemia, soft tissue inflammation, fluid behind his ears, and I'm sure I'm leaving some things out...all in the past month or so.

My frustration has been growing day by day with news that there are still no answers. The specialists are completely stumped. How am I supposed to help my baby if we are all just guessing?

I am normally very happy and don't let these things bother me. I haven't really cried or stressed over health and developmental issues that Kaleb has but as he gets older it's hard for me not to. I know there are parents out there are are dealing with even more than we are and I feel for them. I am so lucky to have Kaleb in my life...I am truly blessed. But dammit....I hate you Trisomy. There are mother's out there that don't know what NILMDTS is (Now I Lay Me Down to Sleep), or what congenital heart defects are, or stenosis (I swear all Trisomy parents know about stenosis...stenosis of everything!)...I'm not one of those mother's. Unfortunately I know about all of those things and a billion medical terms and medications and therapies. However, those same mother's also do not know about the special fingers and toes our Trisomy babies have (and oooo do I love those special piggies!), or know about that special one crease in our babie's hands, and they also don't get to same excitement over a child doing something that seems to be small...like opening their hands, putting pressure on a leg...and lets not even talk about the bigger milestones like walking and crawling. I bet I'll fall out of my chair when those happen. I guess it's a love-hate relationship that I have with Trisomy.

I just want answers. If there is something wrong with my son, I want to know so it can be fixed or treated or whatever needs to be done. I feel like there is something really going on that is causing the anemia, his bone marrow to not work properly, and the soft tissue inflammation...I feel they are all linked and no one has a clue. What if it's getting worse or doing more harm than we know and it isn't being treated? Ugh.

Sorry for my soap box...I just needed to write and get some things off of my mind.

Wow...I just "googled" Trisomy 9 to find a page I had been looking for and my blog came up on the first search page. Wow. Hopefully my blog can help educate pregnant moms or new moms in the future about Trisomy 9. When I was pregnant there was not much information on the internet and finding someone's personal blog would have been amazing.