While I once spent free time reading articles on education my focus has now shifted and most articles I read are about special needs. You focus and spend your time and energy reading about things that are important to you. I have read a few different articles this week that have made my brain spin and ponder.
One I read was about when you live a life that is other people's greatest fear. Being pregnant and in online mom groups this one feels so real to me right now. I see women who are beyond scared of living my life. I remember having a "come to Jesus" moment when I was pregnant with Jillian about special needs. I was driving and the thoughts just kept going through my mind about what if Jillian had special needs. We tried for 18 months to get pregnant and at that point my heart just longed to be a mom so badly. I remember praying and telling God that I was laying it in His hands because me worrying about it was not going to change anything. I remember feeling at such peace about it after that point (remember we had NO prenatal testing with Jillian that gave any indication that something was up). I would still worry about it for passing moments but I kept giving it back to God. Looking back I see how God was preparing my heart for what was to come. He knew I needed to work on giving this to Him before I even knew what was going on, and while there have been many times over the last 3 years that I have taken the worry back and tried to carry it myself, I am thankful that God started working on my heart then because it gave me a foundation.
But it still hurts and stings a little bit when I see people saying things like "as long as the baby is healthy, that is all that matters," cause I can tell you, its not all that matters. You will still love your kid even if they are not healthy. They are still your baby. Honestly this time around Brent and I keep joking about what if we have a "typical" child, are we going to know what to do. We had some friends over a couple of months ago and their kid asked for a snack and Brent looked at the dad and asked what in the world an appropriate snack for this child would be, cause if you ask Jillian what her snack is she will tell you about her afternoon oral med that she gets, that is what she is asking for when she asks for a snack. Special needs parenting is our normal and sometimes we forget about things that other kids require that ours does not. When something is your life you live it, and sometimes you forget about the fact that other people do different things. I get why looking at our life could look intimidating to some, but honestly their are things about other peoples lives that look intimidating to me. You do what you have to do. We are blessed that there have been so many situations in our lives pre Jillian that prepared us for different things in our lives now (not to say that we came in all prepared, or heck that we are even prepared now) but God brought us through different things to give us skills that would help us. I am really at peace about the fact that if Jilli has "this" then there is a 50% chance of having a second child with it. I know that sounds crazy, but if God decides that He wants us to take care of a second child with "this" that is ok, He will be with us and will help us. Yes I am sure it will feel overwhelming at times, but no matter what, there will be times life feels overwhelming. God has a plan for this kiddo and I feel privileged that He is letting me be their mom not matter the circumstances.
Our society is very open with the fact that special needs parenting is not something you want to do. Sometime I feel like the special needs community is a little to blame for that, because I see far too many things about how special needs parenting is that hardest thing in life... newsflash... I don't know where anyone gets the thought that anyone else's life is easy, EVERYONE has struggles, hurts and pains. Yours are different then mine, but when we play the "this is the hardest thing in the world card" we build walls the divide us from people we are looking for support and acceptance from and it invalidates other people's lives and feelings. I full understand how overwhelming special needs parenting can feel and I understand how hard it is to explain something to someone and have them get the weight of it if they have never experienced it. I was talking with two amazing special needs mommas this week about some situations going on in their lives that have to do with their kiddos needs and I remember thinking how my reaction to what they were saying is different because I have been there before and can relate in a way that 4 years ago I would not have been able to, but I also think that as humans we have a certain level of empathy that we should all be able to extend to each other, if you can relate to the situation or not. Yes I can relate to these mommas differently because I am in the same situation but that does not make the way that others without kids with special needs relate to me invalid, just different, and sometimes different is a really good thing!
I was reading an another article this week about types of friends families with special needs need in their lives. I smiled as I thought of different people that are involved in our lives and the way that they love us. Honestly for almost everyone I thought of, the way they treat us and love us is no different since having Jillian. It works in both directions, people who treated me like crap before Jillian, still treat me like crap now, her needs did not change that. The people who really care about me, really care about me. Yes some of the people who were more of acquaintances before Jillian have left, and at times that has really hurt, but people are always going to come in and out of your life, it is part of how life works. I am thankful for the people who love and care about me. Some are close and I talk to them frequently, some are people that I don't get to see or talk to often but I still know they pray for us and wish us the best.
I really debated posting that article on my facebook page though. I did because I wanted to say thank you to the people in our lives that are amazing, but there was a part of me that worried about giving the online everything is perfect image. There have been times where I see people getting something or doing something and I feel jealous of why don't I get that or why does someone not do that for me, spend some time online and I am sure at some point you will feel that way too, so I was nervous of making it look like we have amazing perfect relationships with everyone in our lives and that we always feel 110% of the support we need... lets be honest, no one has that. We are humans loving other humans... that is messy, and none of us can fill anyone up 100%. There are always going to be times in your life that you feel let down by other people. One of the situations that sticks out to me is when I was younger and would have school events and such my parents were never the ones to bring flowers or balloons (pre really bad allergy) or things like that and I would see other kids parents do that and feel bummed and left out but had a conversation with someone once who's parents did bring showy flashy things to those events and hated it... because it was fake and a show for other people. Their home life rather sucked but in public it was a big show that everything was perfect, so to them they hated the flowers and balloons that I was throwing a pitty party for myself about. It made me stop and think and reflect. Would I rather have my parents love and respect and encouragement all the time and know they supported me, or a 60 second show in public? Honestly I would rather have the love and support without the objects to show for it but the stability that comes from love, respect and encouragement is so much more rewarding. My parents showed me they love me in so many other ways, but in the moment you get caught up about what someone else is getting. Sometimes I really struggle about writing about highs and lows. Sometime I feel like it is just easier to list the facts. I feel like if I talk about how I feel about something that is hard for me that I will sound like I am whining or ungrateful or that I don't have joy. I worry that if I only write about what makes me happy then I am painting a fake picture. This is one of those things I ponder from time to time, about how to write the balance. There are times when I write more about happy things, and it does not mean that everything is rainbows and sunshine but that I am working hard to focus on the positive, but then someone comments how my life looks perfect and then I feel bad for giving off that impression, not because I don't love my life but because painting a picture that your life is perfect does nothing to help others, it just makes others feel bad and no one wants to be around someone who pretends to have it all together. It also does not admit that sometimes you need help. But at the same token I don't want the pendulum to swing the other way and only portray negative because there are so many amazing things in our lives. I don't want to live with a rain cloud above my head because then I miss out on the great things around me and the things that God is trying to teach me. Yup there will be times I feel overwhelmed or exhausted and my writing will reflect that, but it is about balance. I think back to the verse about being happy with others when they are happy and morn with others when they morn and it reminds we that sometimes I need to apply that verse to how I view my own emotions. You hear the saying that life is like a roller coaster and to some extent that is true but in other ways it dismisses that fact that sometimes you are going through highs and lows at the exact same time... that is life!
So there is where my brain has been lately.
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| The strength does not come from me... it comes from Him and helped by the love and support of others |
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