"You can't stay in your corner of the forest waiting for others to come to you. You have to go to them sometimes."
A. A. Milne
"Carve a tunnel of HOPE through the dark mountain of disappointment."
Martin Luther King, Jr.
So many thoughts going in and out of my head since yesterday and I went to MOPS today and those thoughts have gone from flowing like a creek to now like a river, not a raging river but definitely has picked up speed. Not in a bad way overall but just so much to chew and digest on.....
It really started yesterday morning. We had the stomach bug here this weekend (goodie) and my son who got it first, was home with me yesterday and we went for a short walk. He's at his school today yet I have been on edge hoping I don't get a call..... During that walk, I saw yellow butterflies and thought to myself, sometimes being able to live so carelessly, with so little burden would be such a blessing...
I won't get into specifics here but I know a lady who's husband was just diagnosed with cancer and is now starting to go through all the technicality stuff with doctors, hospitals, insurance, traveling and all of that. My journey is not cancer. I thank God for that. Yet I know all too well what she is facing in all the dramatics of the planning, traveling, scheduling and all of that. All too well...
At MOPS today a mom was talking about the allergies her two boys have and how that has changed their lives, including having to have Epi-Pens. We talked about the Teal Project (Halloween treats vs non-edible treats) She was sharing how at least at this point in time, there are things he will never be able to eat and the fears of parties and places that she has no control over.
BOOM!!! I almost lost it there.... It was a year and a week ago today that I was sitting at Children's Medical Center with my son blatantly unaware just how bad the MRI and report was, of course it could have been much worse but my world was crashing, my safety net had broken and I was falling into God knows what next. I remember calling my husband sitting in the cafeteria with people looking at me bawling my eyes out because I was scared to death of the future.
MOPS today brought some of that back in knowing that my son will never get to ride a rollercoaster, never get to bounce on a trampoline, never get to play in a bounce house, never get to participate in contact sports, drag race, skydive, bungee jump, or anything else that has any G-force. Big deal right? "There's tons more he can do! Why think about that?" Think on this: Those things that you are told you can never do or shouldn't do, are the first things you WANT to do. Think on this though: like someone with a severe allergy could die from contact with an allergen, so could my son for those things that he can't do. Likewise how kids and adults don't even think about it day to day what they do because it doesn't affect them, someone else does that and it could kill them. Right now he's too young for bounce houses, but what do I tell him then when he is old enough and they are at church VBS (Just generally speaking here) or a friend's birthday party? How do I tell him no without breaking his heart and leaving his heart open for attack from peers because he can't do this or that?
It also got me thinking to our trip to Dallas two weeks ago. Cleared for a year. Good right? Absolutely! Was I ready to hear that? Honestly, no..... I can't let go. I am not ready. Pending good sleep studies and checks for papilledema, we are cleared from Dallas for a year for my son. Yet his syrinx is unchanged and I was told it could take years. Years.... No pressure on his brain stem now thank God so just waiting and watching.
Waiting and watching..... God knows, He knows I hate those words..... For one who likes to know the ins and outs and whens of stuff going on around me, that is the ultimate form of torture, especially when it involves my kids..... So the best way I deal with that is to stay busy. Times in the car though, gives my mind too much to think.
After posting on several groups recently, I found one parent who like me has a child with Muenke AND chiari. My first family I knew that had two with a similar craniofacial syndrome, I have talked A LOT with her and it's really interesting how similar yet different our sons are. Her and her two kids have the same syndrome, likewise me and my two kids have the same one. SCS vs Muenke. Come to find out, there is one who has a child with Muenke AND chiari that I got to connect with too. Social media really has blessings sometimes. Sometimes. :) I have not tortured the new one yet like I have probably tortured the one I have known longer. lol
I have also admittedly struggled with some of the feelings that I have had before about feeling insignificant. Of course I matter, for one my children and husband would be really suffering without me. Yet would anyone else? Do any of those who know we are gone on medical trips, or just had a big one, or having a surgery, do I or my children matter to them? That's a struggle I admit. I posted about that after my son's last surgery somewhat. Is it wrong of me to hope that maybe me or my children are missed when we miss church, a Bible study, MOPS or other things like that? Was I wrong that I felt down about the fact that nobody in this community but one even asked me till today at all "How was Dallas?" Prior to today, nobody but the one prior asked. BUT when I have been casually asked, "How are you?" "I'm good, glad to be back from Dallas." "Oh? How did that go? Why were you there THIS time?" kind of thing. (Dallas was September 27th-30th)
As part of a study I'm doing, one question asked that I will answer for the most part here because I want to be real. It was asking who or what are we jealous of and why. My answer was: "I have had many things over the years at times but most are minute and insignificant now. Two things that come to mind though now. (Off and on struggle for years) How come do some families in need get so much support (Not just money here) yet others are ignored? Is it really about social status or popularity? I often feel like we are forgotten. The other thing is that sometimes I feel that people look at me as a social leper or my kids are because I feel like I don't matter to them. I'm barely talked to while out and about, I usually initiate any conversation and it usually ends just as quickly. When I'm not present because of Dallas or whatever, they know about it but 99% of the time, nobody around here checks in on us, at least not till after all is said and done. That's why I am so self reliant and make sure everything gets done myself because to everyone else, I'm crap. Maybe not the reality of it but that is what message people give off. I'll expand more into that shortly.
I'm probably going to get questioned about this post now that I have said what I did but the struggle is real..... It's a common echo in the special needs community yet nobody wants to face it head on. Why? Is it because the population is small enough that it's easier to just sweep it under the rug and focus on the general population?
I don't talk about the other stuff. Today I will. Some of you will understand what I say, many will think I'm nuts. When you are traveling so often, you often still hear road noise even when not driving, you hear the DART transit train whizzing by, even when you are not by the rail, let alone in Dallas. When you close your eyes, you can still smell the hospital, you can still smell the Ronald McDonald House, you can still smell the medical grade sanitizer used. Walking into a different church we go one of our Bible studies at, something they use makes one of the halls smell like a hospital floor. Nobody but medical parents/caregivers/professionals think of that. When you wake up to use the bathroom, you swear sometimes you heard a monitor beeping or a child crying. When your phone rings, you automatically brace yourself for it being a doctor, school or some other medical related call that has to be handled. When you go to your mailbox and automatically pray it's not another fight coming with SSI, insurance or a doctor's office, then feel relief when it's just an electric bill or some other thing. When you open your primary insurance statements and can already tell before opening which child it was and what EOB it likely is. Then think "Thank God for primary AND secondary insurance" when you see what the charges are vs what you would have to pay out. When your son's craniofacial surgeon says we don't need to do another vault till he's five, you start thinking about the insurance battle ahead just to get it covered. Then you think back to making sure you never forget the sleep cot so you don't sleep in that crappy recliner EVER AGAIN! THEN the next part comes in.
That's not the worst though. The worst is the thoughts of the future.... The what if's, the whens, the whys...... "Just give it to God, He won't give you more than you can handle." That's a lie, He will and He does. The only way I get through it without being in a looney bin is by His grace and patience with me......
I have always struggled I admit also with feeling like God truly loves ME. Oh yeah, I know what the Bible says and all of that but to really FEEL it, that's always been a struggle. Is that why I feel the way I do about people or is it because of how people and even other Christians treat each other, it makes it harder to connect to what God says He feels about us? I still struggle with figuring that the only one that will take care of me and my family is myself. If I don’t get it done, and keep on everyone else to get what they should do, done, it just won’t be. I also admit that I struggle with people giving up on me or just quitting because all before have. They either always quit because it was supposedly my faults or because I didn't do as they wanted me to do. Always. Teachers, counselors, "friends", etc. Every single person who has been around me has except my husband, at least at one time or another. Sometimes I'm amazed he has not...... I know some family and "friends" in the past have told him that he should just quit and give up on me, that I wasn't good enough for him or for anyone.
See why it's hard for me to stay connected to the idea that God won't give up on me either?
How can we show others who God is if we don't act like how God would? How?
Not to get a debate started but how also then if we are so hypocritical and judgmental over what people wear, say, watch, do, etc, are we willing to compromise for our upcoming POTUS? Those that know me know I am NOT happy with either option. Voting the lesser of two evils here in my opinion and there is no winning side. I am also reading post after post of evangelicals saying to vote for Trump because at least he has not done "this or that". Well, let me also enlighten you. Trump isn't conservative either, he's as liberal as Hillary. Look it all up for yourself. Unless he has radically changed (And a 11 year old video to me is no basis on either side of that because of how OLD it is) he has also supported the same things that Clinton has. They used to be friends. Prove to me that either side has or has not changed to the point they are worthy to be POTUS.
See my point? No? Let me expand a bit.
Not long ago I shared a post about a nine year old child who had committed suicide. Nine years old. The same age as my daughter...... He killed himself because of bullies at school. I went off on my Facebook page about that.... Ripping up parents and schools and bullies. I did say a few words I shouldn't have said. I admitted it and it was taken down. It was not before I got others angry with me over my words. I am not denying that I shouldn't have used those words but for people to get more upset with the words said over the story that was shared, that to me says a lot also.
What is my point?
How is it then that what people say, watch, do, wear, etc is not okay but it is okay to elect either of the two options for POTUS AND they are actually blowing off poor choices in behavior in order to say, "Well anyone but this one". Justify that for me please..... Why is it that everyone is up in arms over things Trump has said (NOT JUSTIFYING) but so nonchalant over everything Hillary and even Bill has done?
Can that be explained? (And no I don't really want to vote at ALL this year. First time since I turned 18 I dread election day.)
I look at us as a species and just shake my head... Nature says it's predator vs prey. Humans are the top of the food chain. We kill and destroy everything we want, even ourselves. Any of you know what the latest with Russia is? We are on the brink of another cold war if not worse and all we talk about is the Kardashians, Hillary and Trump and how much we hate the other side and how evil each side is. Politics of itself is evil. This is not what God created us to be but this is what we made ourselves to be instead.
God help us because this nation really is getting what we wished for.....
https://iamchrisgilmore.com/2016/10/08/church-we-have-no-dog-this-fight/
Now off politics; (I heard you say THANK YOU!) :D
How are we really going to bring about change in this world IF we aren't willing to do any ourselves? How are we to really help people understand God's love if we aren't going to SHOW love ourselves?
Maybe my issue with FEELING God's love is because all my life I have struggled with that. I was taught by so many that love is conditional, REAL love doesn't exist. "You are only loved if you do this or that or do ___ right" "Nobody loves you because you _____" type of thing.
You can tell someone you love them all you want but unless you show it, you are the liar.
So think on that this week. How are you going to truly show love? I'm not saying be a doormat but also don't be a jerk and not care at all. What about that "disgusting homeless looking man that always peddles on the highway for attention." guy? Do you really look at people like that? If someone doesn't fit into YOUR mold of how they should or they do not fit into YOUR mold of how exactly they should act 24/7, are they then unworthy and deserve whatever they get? Do they then deserve to be unloved? Do they deserve to be treated like a social leper? Like they deserve to wear a scarlet letter of whatever sin you think is the worst in them? Think on that. Would you want God making you wear a literal or figurative scarlet letter of your own for the world to see? No? Then please don't treat others the same. If God could have brought Saul to become Paul, He really can transform the "worst human you have seen" into one of His best messengers.
How will you encourage that? Will you snuff their spark out or will you feed it into a raging bonfire that helps many?
Sometimes those who we think are the most unworthy are sometimes more valuable then the most precious stones.
~ Special Momma ~
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