A Whole New World

Autumn sleeping on mommy, snuggled with her burp rag

Autumn has learned how to hold the pacifier in her mouth by herself

Sometimes she uses her hand instead of her arm but I haven't snapped a picture of that one yet.

I have entered into this whole new world of "friends" on the internet of mothers who have children with SB or trachs. I find myself talking to these people more than my regular friends these days. I guess there is this bond of mothers knowing EXACTLY what the other mother goes through on a daily basis and you have someone you can actually talk to about your daily ups and downs. At first I was just on this site that has over 150 moms of SB kids and even though my daughter has the same birth defect she is more severe than most of the other SB babies so I then found this site of moms who have kids with various health issues but we all have kids with a trach. At this time I am relating more with those moms since Autumn's SB is secondary to all her trach issues even though it is the SB that has caused all her trach issues. Most of these moms have nursing and know what a struggle it is. Anyways, I've caught myself with this whole new language I know that I can use with these SB and trach moms that my regular friends and family don't understand. Words like: AFO's, SMIV, Peep, 3.5 Boniva Flex, 8 Fr, HME, CPT, and all the numerous medical terminology we use on a daily basis now. I just never realized how many disabled children are out there and it is a whole new world of reality for me. I hardly ever see special needs kids when I go about my daily activities--I've never ever seen another kid with a trach before Autumn got hers. When we do to our dr. appts now at Scottish Rite the norm is every kid being in a wheel chair or at our ENT appts. with kids with trachs filling the waiting rooms and you will hear all the suction machines being turned off and on. I am comfortable now around those sounds. When we do find ourselves without other trach kids around I get nervous about having to suction my daughter with others around because of course you get the stares but the sound is not pleasant as well. I hope there comes the day when we can take Autumn to do "normal" activites with the family like taking her into a restaurant. I mean what's the proper protocol with that? Is she banned from those places because we may have to suction her while someone is at the next table trying to eat or she may start beeping and we disturb the people next to us with her beeping. I know now why I don't see these special needs kids out in public but I wish they were there and could be who they are without worrying about offending the person at the next table. This is all a learning process to us so we'll see what the future holds with introducing Autumn to the real world. I am very humbled and blessed to meet so many special moms taking care of these special kids. When we first heard about Autumn's disability and people would say, "God chooses special people to raise these kids" I would just be rolling my eyes on the inside thinking yeah right-I don't want to be special and is that suppose to make me feel better? Well, now that I'm in this category I've realized it is true that God decided He wanted to make me into this new person I was not before and give me strength, patience, and compassion to deal with my special daughter and that without His complete help there is no way I could be handling all that He has given me and that is does take certain people to accept this and take it all each and everyday. So, to all you special moms--keep up the great work and know you are doing what God has designed for you to do.