I can honestly say that from the beginning of this new journey I never got upset, angry, or cried about the fact that I have a child with autism. It wasn't this 'Why us?', 'This isn't fair', 'This can't be happening to us' or 'What are we going to do.' Our lives were forever changed, but we never struggled with it being this awful, doomsday type of occurrence. Not because we are these super strong, resilient super humans, but because we were able to filter it all through our belief that God is in control, and He has a specific purpose, meant for our good, through all of this.
I was looking for a quote to share from 'The Shack' that came to mind when I was thinking of this post and I ran into this one as well, and thought it also fit well with our situation:
"Just because I work incredible good out of unspeakable tragedies doesn't mean I orchestrate the tragedies. Don't ever assume that my using something means I caused it or that I need it to accomplish my purposes. That will only lead you to false notions about me. Grace doesn't depend on suffering to exist, but where there is suffering you will find grace in many facets and colors."
It just reminded of how God is good all the time! Even though through Adam death came and we see the effects of it everyday in our own lives and all around us. God's grace is soooo amazing that He then turns the very things that sin, that was willingly chosen, causes in our lives to bless us with it. The problem is that we don't always see things like strength, humility, righteousness, and learning to give unconditional love as blessings. We tend to think more along the lines of success, health, finances, as blessings. So then not only do we deal with the struggles and pain a tough situation might cause, but we add to it by thinking that God is punishing us or worse has forgotten about and doesn't care for us, and totally miss how He is actually loving us through it all!!
Ok, sorry about the tangent, back to what I wanted to share about my heart today!
But what has brought me to tears many times is Naomi's heart. In the sense that as her mom, I don't want to see her be rejected and/or hurt by others. I don't want her to be labeled and shunned, because something is 'wrong' with her.
So last Thursday, I got side swiped with this reality. That some people simply won't be able to see beyond her new 'label.' And the other hard part of this journey is that you never know when you will have to deal with this. You never know when someone will give you 'that look' while in public and she's having a meltdown. Or when you will get a phone call that says no one wants her. Well, that wasn't really what the phone call I received said, but that is what I heard! For better or worse, we set up these filters and preconceived notions based on our experiences and emotions. Here I was struggling to keep Naomi awake getting her ready for an EEG when Jerod calls me and tells me that the wonderful weekend away that some of our friends had planned on giving us, wouldn't be able to happen because they weren't able to find someone to take Naomi. I wasn't angry or thinking of anyone in particular to be mad at or blame, but I was hurt nevertheless. Maybe it was coincidence, but why was she the only one that no one seemed to want to keep?? It didn't help that the first words that came to my mind was those of someone I considered a good friend, someone that Naomi has always had a special affection for. I remember crying with her at the very beginning of this journey, before we even had the official diagnosis. Crying about how people were going to treat her differently, and people wouldn't want to be around her, or want to watch her for us anymore. And I suppose it wasn't fair to do this, but I had said this to this person expecting a specific response back, expecting to hear kind words of encouragement and comfort. Instead I got back, 'I suppose there are specially trained people that you can pay to watch her when you need it' And on that day it didn't affect me as much as it did a few months later after the official diagnosis, and this person didn't seem at all concerned about what we might be dealing with. Not that I think everyone else should be so consumed with our problems, but I thought I had meant more to this person, I had thought that Naomi meant more to this person. So again, when I got that phone call, these same words were echoing through my mind. And I all I kept hearing was, No one wants her, no one will want to love her!
I think too, as her mom, it is hard for me to put myself in someone else's shoe. Someone from the outside looking in. There are a lot of stigmas and negative information out there about autism, or any disability really. And I do understand that it isn't something everyone was cut out to deal with it. It doesn't make me feel any better or hurt any less, but it does help me to not be angry and/or bitter.
When we look at Naomi we don't see this child that has a bunch of issues that needs correcting, causes us embarrassment, or makes our life difficult. Not at all, not even at her worst. What we see is all of the wonderful things that make her, her. Some of them make us laugh, some make us feel blessed and loved by her and God, and some make us really have to work on our self-control and patience! But isn't it like that with all of our kids?? I think of my other 3, and they make me feel the same way!!
I love this quote from 'The Shack' the one that I was originally looking for to share:
"Each relationship between two persons is absolutely unique. That is why you cannot love two people the same. It simply is not possible. You love each person differently because of who they are and the uniqueness that they draw out of you. And the more you know another, the richer the colors of that relationship."
I remember talking with a friend and she asked us moms of multiple kids to be honest and share whether or not we truly didn't love one child just a little tiny bit more than the other, and I had shared how honestly no, and how when I had read this quote I had thought of how it perfectly described the situation. How you can have 4 different children, and truly love them all the same amount. It might be for different reasons, but you love them all the same.
I think of Isaac, he is our funny guy. He has an amazing memory and once the rules make sense to him, he'll stick by them. And he is sooooo tender-hearted. He melts my heart with the things he says and does, and I generally get at least 10 hugs a day, and am often being told that he loves me! He grasps some concepts that blow me away, especially for how young he is. But he also challenges us in great ways. Being the first born, or perhaps just being the genetic combination of his daddy and I, he things he knows everything. We always has an answer for everything, he always feels he should get an explanation before he needs to comply with what we are asking. He at times honestly thinks that he knows more than we do, that his way would be better! And we have to seek out new ways to teach him lessons, and we need a lot of self-control and patience with him. To take the time to teach him important life lessons, to really change the way his heart is working things out at times, not simply change his behavior.
Jojo is our uber girly-girl. She loves jewelry and looking pretty. When I get dressed at times she will tell me 'Mommy you look beautiful' She's also our little dancer, you can tell she has some brasilian in her by the way she will swings her hips! Which is also why her dad and I decided she'll be home-schooled through college, not just 4th grade (Just kidding...maybe! ;) She can be as sweet as she wants to at times and do things just to make you laugh. But she has a real bad temper, coupled with some great whining skills! She thinks she is 15 and everyone else's boss. She has gotten the idea pretty good that she won't boss mom and dad around, but not so much with her siblings. She goes around shaking her finger at them and snatching things away that she feels they shouldn't be doing. She also wants to be the center of attention often, and will immediately imitate whatever it is we might highlight someone else doing. So we know we need to work extra hard at making sure she knows she's worthy and special just as God made her, she doesn't need to be like anyone else. We also need to hone in her bossy-ness and harness it into some good and useful purposes.
Elijah is still perfect! :) We are simply trying to take it all in with him and really enjoy him being this little. With this being our 4th time around, we truly know how fast it all goes by, and since as far as we know he is our last, we don't want to rush anything! Although, we can already see traces of a temper and impatience with him...and as he grows, I am sure so will the challenges he will bring us!
So back to Naomi. Yes we need to keep a closer eye with her. The girl has some amazing upper body strength and a curious mind that gets her into all sorts of (usually messy) situations. But there really isn't any special way to 'deal' with her. Does she have special needs, sure, but so do my other three children. Since we experience first hand and often all of the good things she brings into our lives, it is hard for me to imagine someone pushing her away because of a label she now has, because of these challenges. The way I see it, all this label does is create a more specific road map on how to meet some of the challenges. Since we know what is affecting her, we can choose from a more specific list on what to help her with.
Back to that Thursday...it was a rough day all around. Just after the phone call, I had to deal with her having major meltdowns in the waiting room because she was absolutely exhausted from being up most of the night, as well as some medicine they had me give her to get her to fall asleep for sure during the exam. And since our appointment was delayed by 40 min, it wasn't good! Then I went into a room where I had to hold her down while a nurse tied down her arms with a white blanket, then wrapped her up into a cocoon with the same blanket, and then grabbed an actual restraint and strapped her onto the bed. Then while my heart was already broken into a thousand pieces, I had to hold her down for about 30 min while little electrodes where placed, glued, and blow dried onto her head. I was doing all I could to hold back tears and my urge to just hold my baby. At that moment everything was reminding me that she wasn't 'normal', that our lives weren't typical. I wanted to make it all go away and just hold her and let her know she is special and loved.
But God is good, and that very night he worked on my heart and calmed me down. (Since this post is long enough I will go into more details on that on another one). He calmed my emotions, helping me to not allow the hurt become anger. He also blessed us with some great people in our lives that are able to see past her autism, past the unknown, and be with her. So we did still have our weekend away. And Naomi had a great time with a great friend of ours. And we were thoroughly blessed by the love of God that was shown to us through so many friends who worked real hard on our home for us!! (more on that later as well!)
Most people wouldn't know very much about autism, and how to deal with it. And that is ok, it doesn't make them bad people. I also have to remind myself that perhaps they don't even mean to hurt me and aren't even aware that they do. There is still so much not known about Autism and it certainly isn't talked about very much, so no wonder people may not know how to react.
For those reading this that are in our life and may be uncomfortable because you don't quite know what to expect, what to do, how to act, how to be around Naomi, or anyone else with Autism. Please don't hesitate to talk to us! We won't be offended or hurt, we'll be touched that you care enough to take the time to learn about it. I remember just a day or two after her appointment sitting at a friend's basement, supposed to be watching a Brasil World Cup game. And Naomi's recent appointment came up. I remember how this person was really intrigued and kept asking me all of these questions about it. I hadn't realized it at the time, but I remember laying in bed that night thinking how good that made me feel. That someone cared enough to take time away from what they were supposed to be doing to step into our world!!
It also helps when I am reminded that we aren't the only ones that have to deal with this. That is isn't a personal thing, it's not a reflection of us. It isn't because we aren't worthy of that kind of love or deserve that kind of friendship. I am reading Mother Warriors and this quote from someone's story with autism really jumped out at me.
'Jack has a few people in his life who stayed dear to him and I bless those people every day because it takes a lot of unconditional love, patience, and understanding to be in someone's life who has autism and the few who have stuck by us I will be forever indebted to.' - Becky Behnan
It reminded me that this is a hard road, it isn't something that just anyone can handle. And that I need to focus and be blessed by the people God has given the strength to travel on it with us!! Yes, Naomi may have some special needs, but there are special people out there that are willing to help us meet them!!
Overall, I am grateful for some amazing people God has placed around us at this time. I just have to remember to make a more conscientious effort to focus on that during the moments that I feel alone and heart-broken! Like the Israelites leaving Egypt and going through the dessert...I focus too much on the problem right in front of me, and forget to look at the big picture of all that God has done for us, and Naomi!!
