What I have learned since becoming a mom of a little girl who is medically complax

I have spent a good amount of time in self reflection the past few days. I was really hurt by several things that someone said to me this week and I left that conversation feeling like my heart had been beaten as this person attached on of the things that we dearest to me, me being a mom. After the sting went away and the reality of talking to some people in my corner in life I remembered that this person's words came from their own hurts and were not truth about me. It got me thinking about what I have learned since I became a mom of a child who is medically complex.

1. I learned who is there for me. When life is not easy people leave. In just normal ebb and flow of live people come into your life and people leave your life. Over the past two years I have really figured out who is in my corner. Who will listen as I rant about doctors, who will try to look up Jillian's stuff online so they know what I am talking about, who is not offended when we change plans last minute because Jilli is ill, who will do all they can to keep Jilli healthy including not coming over if they are sick. I have learned who has my back and who does not. At times this process has been painful but I know I contribute as well. I can't just hang out whenever. I know most of what comes out of my mouth has to do with Jilli. I know I am sleep deprived and that sleep deprived people do not always make the best friends. Trust me I know that I play a huge factor in this, but I am so thankful for the people that have stuck around. I treasure them more then I can express and I really value them. These people are not all ones that are right here all the time, but people from all over that have stuck by us in all of this.

2. I have found my voice. I am a person who runs from conflict. I am a "this is right" kind of person who sees a rule and will follow it because it is the rule, however I have learned to speak up for myself and my child in the last two years. There have been times were I have disagreed with specialists and I am learning when I have to jump through their hoops so they see what I am talking about and when I need to stand up and say no. I was brought up that you respect authority, so I use to always take that as doing what I was told, however I am learning how to respectfully disagree. Yelling at a doctor most likely will not get the best care for Jilli however having a respectful conversation will. I am learning how to let go of my personal dislike for conflict and learning how to have a productive conversation about something we disagree about.

3. I have learned how to do a lot of things I did not know how to do before. I have a degree in special education and I use to work as an in-home autism therapist. I baby sat for a child with a feeding tube when I was a teenager, but it is different when it is your own. I know so much that I did not know before. My knowledge has grown a lot. I can hold high level conversations with doctors. I know what they are talking about. I understand respiratory rate, pulse ox, pulse rate, stoma conditions. I have to get it because I live it and to be the best parent I can for Jillian it is my job to educate myself.

4. I have learned the love that special needs parents have for each other. I have asked other special needs parents odd questions at odd hours and they have lovingly helped me. There is no manual to parenting, there is defiantly no manual to special needs parenting. We got about 12 hours of training before they sent us home with a child that had an NG tube. Trust me in none of that training did they tell you how you were going to dress, bathe, change, ect a child with a tube running out of their nose. Then we had to learn it all over again when she had her tube placed in her stomach. It was other special needs parents that helped us by giving us pointers and telling us what worked for them. For that I am very grateful for social media.

5. I have learned to enjoy the little things, that everything does not need to be over the top. Sometimes the best thing in a week is making it 48hours without a neb treatment. Some of the most exciting things are watching her finally do something after months of therapy working on it. Its not all about the huge, the little things matter just as much, if not more, as the big things.

6.I have learned to realize the value in things. When I was pregnant and looking at baby shoes I thought the prices were crazy and why would someone pay that much for kids shoes. Frankly I don't pay very much for my shoes. Then I had a child with low muscle tone that walks best in expensive shoes because they are well made and have the best support. Trust me I don't just go with things because they cost more, but I have learned that sometimes it really is worth it to spend more. (like with her bed, we tried cheep options first, they all failed so we ended up with the pricy option)

7. I have learned the volume it speaks about a person if they are bothered or grossed out by someone's special needs. Most people are bothered from lack of knowledge, other people truly don't care to know, and I am learning when to teach and then to walk away. If I have told someone the same thing over and over about my child and they don't care to listen and it is something that impacts my child, then the person does not want to know and it is my job then to politely end the conversation.

8. I have learned to care less what other people think. When Jilli was first on a feeding tube we did not go out of the house while she was hooked up to her pump (it ran overnight) then she got an NJ tube and ran for 24 hours a day. Life had to go on. I still needed to run errand and do things so I figured out tube feeding in public. Trust me we have gotten a lot of glares, but I don't care anymore. I use to try to hide it when I was doing something with Jillian's pump, now  I do it right out in the open. At a restaurant this morning her pump went off. I filled and and did everything right on the top of the table and I did not even look to see if anyone else was looking because I did not care. My kid needs to eat, she eats through her stomach, she needs a pump to get it there, so I will take care of that were we are.

9. I learned how loving many people in the medical community are. Some of Jillian's favorite people are in her medical team. I have watch these people love my child as more then a patient. They truly care about my kid as more then just a name on a chart, they want the best for her.

10. I have learned how much one little girl can teach the world. I am blessed to be her mom. She have brought so much joy, love, laughter and amazement into my life. She is a very special little girl that teaches the world to love and lights a room with her smile.