It’s no secret that my life isn’t easy. It’s also not a secret that I’m not the strongest person in the world and often find myself struggling to cope with the responsibility I have.
If I’m to be honest with you all, I would have to say that I’m going through a rough patch. I’m not really sure how to explain where I’m at.
Right now I feel like I’m drowning in so many problems that I can’t even get my head above water long enough to catch my breath.
There are of course, the problems that everyone has, like bills, car problems and repairs to the house.
However, that’s not what really weighs me down. I guess weigh my down sounds really bad. I suppose that I mean something more along the lines of what I really struggle with.
The biggest thing that is crushing me right now is Gavin’s declining health. I’m absolutely terrified that he’s dying. I can’t believe I even said that out loud but there it is. His health has declined so much that I can’t imagine it working out any other way and it breaks my heart.
In truth, I’m so overwhelmed by this that I literally can’t focus on anything. I don’t even write like I used to.
This is very much consuming me and I can’t find a way out. I can’t find him the help he needs and feel like I’ve failed him.
Some of you may not be aware of this because I haven’t talked about it in a while but I’m still mourning Gavin. Let me explain. Gavin developed typically until he was about four years old. It was literally like we put him to bed Gavin and he woke up a shell of his former self. His personality was gone and the child that I had known and loved was gone.
Now I feel like I’m going through this all over again, only this time it’s different.
I’m at a total loss and in top of everything else, Lizze isn’t doing well. There is no reprieve from the challenge and pain.
I wish I could fix everything but I can’t. Living with that knowledge is something that I find crushing.
That’s all I got right now. Thanks for listening..
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Wow – I love your response. If one more person tells me “God only give you what you can handle” I think I will snap! My response – why would God give me this – why would God do this to someone – why, why, why? And, all the answers back are ones I don’t agree with. I went to Sunday school every Sunday of my childhood. I have attended church occasionally as an adult. I understand people need religion to help them through tough times. But, in my opinion, no matter what answer people give about God giving me what I can handle, I will NEVER agree. If they believe that, then God is not a very nice God. And, I don’t think they want to believe that.
Tammy McCann: every experience is relative and mine is no worse than yours, just different. I totally get it. Hence Lost and Tired. 🙂
I understand. I completely understand. It's really hard to understand why God would allow some of these things to happen. I tend to look at God and what we are going through as two separate things. When I was a paramedic and I had to treat an 3 year old little girl that was playing in her own front yard when she was run down by a drunk driver. How could that be part of God's plan? Sheri, I totally get it. Hang in there.
rjones22 eeyorekitty88 AutismAdventure sheridyer2 I come from a really solid religious background. I went to Catholic grade school, high school and college. I’ve found that I shy away from organized religion. Having the high level of religious education I do, I’ve surmised that “God only gives you what you can handle” or “it’s all part of God’s plan” is something that people say when they know they should say something but are at a loss for words.
I’ve always considered these cop out answers. They come from well intentioned people but done want to believe in a God who’s plan is make my oldest sons go through all that he does?
I pray. I pray all the time but I never look at what we go through as being part of God’s plan for me because if I did, I think I would be angry.
I’m not against God or religion at all but I just look at things a bit differently having been through all I’ve personally been through in my life. Does that make sense to anyone? I appreciate all the prayers we get, don’t get me wrong. 🙂
I just want to let you know that when you click on the link to read this blog post, it brings you to some sort of Google page. But that didn't matter to me. I wanted to know what was breaking your heart. And to a very, very, very minute degree . . . I understand. This is going to sound SO PETTY in comparison!!! But my husband and I are going on a trip to Disney with a huge group of friends in a few weeks (WITHOUT Jack). I will be wearing MATERNITY SHORTS. Am I pregnant? Nope! It's just that the stress of raising a child like Jack has caused me to become a fat shell of my former self. And I feel like I have ABSOLUTELY NO CONTROL over my life. PLEASE, read my two most recent blog posts at http://www.celiacsquirrel.com and you'll discover what Jack's two LATEST diagnoses are. I'm tired. I'm sooooo tired. So no, I'm not dealing with the terror/horror/confusion of what you're going through with Gavin, but I DO know what it's like to wake up every morning, wondering if you're actually "a person" anymore, or just some sort of robot who exists for the sole purpose of helping your children. I've lost my identity. I have a feeling that you have too. So, in a small way, I understand. 🙁
eeyorekitty88 I want to let you know that I do understand what you are saying. I sometimes think God’s plan really sucks and I have a fairly “high functioning” but, not easy kid as well as a complicated medical mess for myself. I don’t know if my blog post might help you understand at all how I look at things but, I thought perhaps it could help you see it from that perspective. http://www.autism-adventure.blogspot.com/2013/09/god-gives-special-kids-to-special.html
In order to answer your questions, I would have to be God. I have opinions and evidence from the lives of those around me and what I read in the Bible but, how God’s plan intersects with free will and the natural consequences of human frailty is in large part, a mystery and anyone who tells you they have the actual answer to that is confusing fact with opinion.
What do I know – I know that God does use pain, suffering and struggle. I don’t always do a good job at accepting it or trusting Him about it. There is something about looking at situations with an eternal perspective that does help my outlook. Also, trying to see everything, good and bad as an opportunity to grow. I don’t always like it, in fact, I often do not but, I know it to be true. I think spending time in church in countries in different parts of the world has helped. Places where you can be arrested for being in church, places where they literally have to trust in God for their survival day to day. One of the countries I was in was lowest country on the WHO list for living conditions. No other countries living conditions were worse.
I don’t know if that was of any help at all, the questions were complex but, I didn’t want to let that keep me from responding at least a little bit.
eeyorekitty88 I just want you to hear me out – the only way that I was able to put it all together (really when my son was 11 and 1st diagnosed he put it together for me) was that it was not all about “me, Raynette”. I hate my son having to go thru this and his brother (who is so great) having to deal with it. But when I come back to it is not all about “raynette” it really helps because we have touched so many lives, such as 1) a black lady at the ss office was at church the sunday before we came to the office and they were saying give blood, put on your licence to give your organs, and get on the bone marrow registry (because there is not enough black people bone marrow matches – now they are starting to do transplants for sickle cell), she would not have gotten on the registry if she had not met my son and he told her his story- she said she was going back to church that wednesday to tell everybody you have to get on the registry. 2) when he was getting him bone marrow transplant i wasnt as worn down as the other mothers who had been dealing with it forever and I was able to see thru the fog they were in and get them to get the nurses to help them, simple things like change the bedding to auful things such as change the dressing on the central line, put pride away and ask churches for help cause they will help with food to going to the library for you and i made sure all of them had a social worker before i left. out of 7 bone marrow transplants only 2 made it and one was my son. 3) my oldest son was at college and the head of his fraternaty. they paired off to get an angel from the angel tree for christmas. when him and his buddy came back with an x box, name brand shoes and clothes. everyone was comparing what they had gotten which wasnt much (it wasnt because they didnt have the money). they asked him why he got what he did for the angel tree kid and he said you have to think “what if this were my brother” they all knew and loved his brother and immeidately the light went on. they ALL went back and got what they then thought their angel would want. The gift in that is that it was not going to be a one time deal. for the rest of those fraternity brothers lives when they did toys for tots or the angel tree they were going to get the best that they could. 4) my sick son changed the way the information was gathered for the whole bone marrow transplant program from the donor. they normally would ask if donor had allergies to medicines (because the patient would get those allergies) but the registry didnt ask about food or animal allergies. it is kind of important to know if they were allergic to shell fish because they could die, or if they were allergic to cats which my son was not untill after transplant and had an ordeal from hell and at least 100K in test before they tested for pet allergies (they were stupid). Because of him it is now standard procedure to ask those life threatening/altering things. I can’t even imagine how many peoples lives have changed because of just those four things. I won’t go on (even though i have so many other examples) but once I figured out that this horribleness (that has been going on for 10 years now) may not be about my son or me or his brother really changed how i thought/coped. It is way bigger than us. Do I wish all his sickness and the hurt and pain we all endured didnt happen heck yeah!! I figure you are having a lot of bad days but try and make a list of other people that your situation has probably helped even though it is so terrible. I have said before my son has said when the pain is so bad (like right now) “at least I am not on the cross” so yes it could be so worse and Jesus went thru that and it was way past horrible so we could have eternity. I hope this explanation helped. if not it helped me which means your post helped me (so put that on your list of who your situation has touched) with my sanity for the day to get this all out. there is no rule that says you cant be mad at God because we don’t understand. Since in God’s plan we have free will which means other have free will, we might be harmed in the process. Please take this post in the best possible light as it is meant that way
Ok- I am completely not “against” the God route. I just would like anyone to explain – and yes, I’ve had this explained many times to me – and it NEVER makes sense. Why on earth would God give anyone such a “plan” for life? No, you will not convince me that it is God’s plan – because I find that ridiculous. Did God really PLAN for me to live like this – the hell no one will every really know – Did God PLAN for my son to have to live like this? Well, I think his PLAN stinks! If people find peace in believing that- all the power to them. But, really???? Really??? If God is so great why put people through this? And, I know, we don’t understand His PLAN – but you know, his plan sucks. My son is almost 18 and the hell I’m going through now and have been through SUCKS! Rob – I’m sorry – but I’m like you, realistic. I’m sorry you are feeling this way–I’m feeling cruddy about everything, too. I take it literally day by day.
Proud for you and of you, Sheri. We, observers, can see the mighty woman you have to be, the strong faith that is growing, the strong love that you have that you share everyday. It's so very hard to understand God's way, but he has a plan for each and everyone of us. You've helped my friend who has an Autistic child and I know you've helped so many more, and along the way you've helped yourself.
oh, rob. Now I realize (and could be wrong) why this whole math/points thing was getting to you like it was, maybe you were trying to figure out something you could control. and here i am trying to "fix" it. when you say "there are problems everyone has, bills, car house" it sounds like that is in the normal category. No, you have to realize those are extra hard for anyone with everything else you have going on. YOU HAVE A BIG LOAD YOU ARE CARRYING. sounds to me you are feeling exactly what you are feeling with all the REAL stuff you are dealing with. When Sheri said below "well, he is alive another day" I have been to that point. Going into my small son's room and praying he was still alive that morning. sometimes i would have to close the door and go cry in relief. The sheer terror of not knowing if your kid is going to live another day is overwhelming in itself and causes some more ptsd.It is crushing!!You are also a man who is a fixer and in your head you are going around in circles trying to figure what to do next and that is OVERWHELMING for anyone. what you are going thru is heart breaking, rough, and scary at hell. I also (even though different) remember the before sick/after sick kid. Hell I am still trying to fix him and wont stop. it is heartbreaking. Please know that I think (and who am I) it sounds pretty normal to "mourn the old Gavin". I want to say again, he is absolutely beautiful on that video. It might make you feel better to make some more "good" videos" when he is being fun or talking about whatever he is obsessing about. tell/ask in advance we are making a fun/good video. Also, i couldn't get thru this without my anti anxeity meds. they really cant be working as i have been on the same dose of clonipin for 9 years lol. but for real, make sure you talked to the dr about your anti depressent being the right one and also make sure if not already to get an anti anxiety meds or more or different ones. You are having anxiety. Also, like Sheri, I am in to the whole Jesus deal. you have to believe in it for it to make you feel better but when my son's pain is so bad and he says "at least I am not on the cross" I am like "oh my God help me". if you ever saw the movie Passion of the Christ – when my son says "at least I am not on the cross" I just want to go down the street running and instead I start saying what I am grateful for and it helps. think good things, do what you can do and get some rest. thank you for my therapy of the day
I have to agree a bit with Sheri. I don’t know what I would do without God. I really can’t even comprehend how anyone can do this without some sort of eternal perspective. Focusing on gratitude does help. That being said, I am so sorry! It is one thing to be dealing with one or two major crisis but, with so many it makes each one seem worse. I know it happens for me. With my own health issues, sons issues, financial issues, house problems, job issues, it can pile on so fast and seem like there is no end in sight. I would like a reprieve please! I am sure you could use one as well.
I wanted to be angry and hurt and mad at God. Why would he LET this happen to any child. It was when I came to the realization that my role is to act as a steward. My son is a child of God before he is MY child, if that makes much sense. In that moment, I put it all back on God. I don't have to understand his plan. Once I let go of that, I noticed that the fog I had been living in lifted. It was my duty to see the bright spots. I made a promise to myself to find something ANYTHING positive about my child, even on his hardest days. At first, it was…. Well, he is alive another day, and although it was a rough day, there HAS to be something positive…. Then, it was the fact that he ate a new food, or that his hair looked awesome that day.
The point I am making is I couldn't handle things in the state they were in and I had to just let the anger and frustration go. Instead, I became grateful for everything I could. Grateful for another day, another chance to have him in my life, regardless if he was on my last nerve or not.
I realize the whole Christianity/God thing isn't everyone's cup of tea.
The best thing I CAN do now is to think of ANY positive of the day…..
It also didn't hurt for anti anxiety meds. 🙂
Rob, I haven't really read how you feel on the topic of spirituality, but It hurts me to read what you have written, only because I know those feelings very well. This may not be how you will go about coping, but i want to share how I have been able to get through life's challenges. I am not in any way looking to offend you, but maybe to provide some insight that can assist. I hope that makes sense. Sorry if this gets lengthy, and if you want to just talk about anything I write on here in a more private discussion, I am here for you.
My son Cameron was around 15 months old, and he literally went to bed one night and said nigh nigh, kisses. The next day he awoke, and has yet to say those words, even to this day. He is 4. I saw his near constant smile that night and it took years before the spark in his eyes came back. At that time, I was in a mixture of denial, ignorance, and grief. I also discovered that same month that I was pregnant, and that just exacerbated the situation for me.
I was also struggling with my faith as a Christian. I spoke with a man who had a child that was terminally ill and in the last stages of life numerous times. He told me that my child, like his has a role in God's plan.