Too Beautiful to Not Share

This came across a mitochondrial disease group that I am a member of on Facebook. This family is so sweet and their story will break your heart but will also give you hope.

For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory; While we look not at the things which are seen, but at the things which are not seen: for the things which are seen are temporal; but the things which are not seen are eternal. 2 Corinthians 4:16-18

When Life Isn't Easy

When our older son regressed at 2 years old in a single day we had a very new world introduced to us. When our younger son couldn't sleep, couldn't stop crying, and was throwing up all of his meals as an infant, we have a very new world introduced to us. But, eventually, we felt we would understand the new world, get used to how it worked, and the heartache would lessen because it would become our new normal. Eventually even hard becomes your routine so you don't have the constant ache of the newness.

The problem with that thought is ... life doesn't work that way with special needs.

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What we thought was a one time regression, was just the first of many regressions our son would have throughout his life. We didn't realize he would learn to add, subtract, and write only to lose them in the blink of an eye. We had no clue he would learn to pay for his little toy he had saved up for only to not understand what that process was overnight. None of this was explained to us and I never read it on a blog, website, magazine, or medical journal. This keeps the heartache fresh. Just as you finally peel off the band aid from the wound, it's like you hear "not so fast, friend" and it starts to hurt all over again.

When our younger son got older we felt he would grow out of some of his anxiety and other issues that seemed to have plagued him since he was a few days old. When he got his feeding tube we figured this is as bad as his eating will get. We got this under control. We didn't realize after a year on the tube we would put a child to bed after a small supper and a small tube feed and wake up with a child that needed 100% meal replacement because he wouldn't eat a single bite. We didn't know. No one told us it could cycle that like.

To make it all worse, most doctors don't seem to grasp any of this. You go to them in a state of shock and sadness to ask for their help and they tell you they haven't ever seen this or, they have seen it and have no idea what causes it. They send you home to deal with what they, as medical professionals, don't even know how to deal with themselves. You, as a parent, are supposed to know what they haven't been taught.

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It's a hard place to be, and it doesn't seem to let up for so many. It's also a situation that is foreign to most people in our world. When you grieve, have heartache, or have pain, it's usually for a time, for a season. You lose a loved one and are stricken with sadness, but you eventually move to a lesser and lesser amount of pain as you carry the wonderful memories of that person and, if you are a believer in Christ, with hope. But, when you live a life where you start to get your feet under you finally after a huge shock or loss, only to have the rug pulled out again and again, that point doesn't seem to truly come.

What can you do? 

Here's what I have learned:

1) Allow yourself to feel the pain - No, don't live in it. Don't let it consume every part of you. But allow yourself to feel that initial grief, sadness, pain, frustration, and whatever other feelings come. 

2) Find your strength - MY strength comes from my faith, my deeply held belief that there is a God, a Creator of all, a lover of souls, a Savior, a comforter and friend. Honestly, without that, there are days I would completely crumble. I have seen miraculous things and my hope is in one who cannot be changed or destroyed. 

3) Accept this is your new normal - Eventually you have to say to yourself, "OK, this is where I live" and learn to navigate it. You have to. If you want to thrive, you MUST. I know it stinks. It's not where you wanted to be, but reality is ... it's where you are. You have to deal with reality. 

4) Accept that your new normal might change at any minute - I hate change. I like knowing what's coming over the horizon. Yeah, well, joke's on me. I live in an environment where the child I put to bed is often very different from the child I wake up with in the morning. So, I have to take each day, each moment, as it comes. I have to look at a situation and say, "wait, is this a new normal again or just a temporary hiccup". Then I make a battle plan and move forward. The enemy is moving, living, and changing, just like in a war. You have to allow yourself to change with it. Period. 

I would love to say I have this down pat. I don't. I cried to my husband this week that it wasn't fair and was too hard. He held me and told me he knew and understood. He didn't tell me to "allow yourself to feel the pain, find your strength, accept this is your new normal ... " He just held me and let me cry. But, eventually I start to move forward with it, I do work to move to a healthier view of what's happening, and I make a new plan to help my kids. Honestly, I am so grateful to have my husband beside me, and even more thankful I have a Savior that loves and strengthens me because I truly don't know how I would make it another step some days without it. 

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Weighted Blanket Giveaway

We are big believers in weighted blankets. They comfort my high anxiety child, bring peace to my child who is very stimmy, and honestly I like it when I am not feeling well. But, they can be a bit pricey. That's why I wanted to share a giveaway with you. 

I am not affiliated with this company in any way. However, I did win a blanket from them earlier this year and I can attest to it's quality. 

Before you enter Lifetime Sensory Solution's giveaway, where you will need to know what weight blanket to ask for, make sure you know how to calculate the proper weight. More weight is NOT better and too little isn't going to help much. 

You need to know the weight of the person who will be using it. Unless your kids, or you and whomever you live with, are very close in weight range, it will serve one person. Now, take 10% of the person's body weight, add 1lb, and that's your blanket weight. 

For example:

If your child weighs 52lbs = 5.2lbs (10%) + 1lb (for growth) = 6lb blanket (actually equals 6.2 but you would round down for anything under 6.5 and up for anything over and including 6.5). 

Head on over to Lifetime Sensory Solution's Facebook page to sign up. I will include the link below. 

I receive no compensation, award, notoriety, or any other payment if you click or use this link. 

When Mom Is Sick

This weekend has been hard. This Mom was sick! It all started on Friday when my incredible husband took me to a fabric store. I know, I know. He IS the perfect man. Want to know more? He bought me "I Love Lucy" fabric. Stand back ladies, he's mine.

As we were coming home, because living in the country means an hour drive anywhere you want to go, my throat and ear started to hurt. I don't mean they started to ache a bit. It was full on pain. Sweet guy that he is, he stopped to get me a drink at Sonic to help alleviate the ouchies with something cold. It didn't work.

I went home, smiled at my new additions to my fabric stash, and laid down. I felt like poop. Actually, poop would have been an improvement. I laid around all evening and convinced my family that sandwiches and such was a wonderful supper -- mainly because it's all I was going to fix. I went to wash up after supper and found out the water was turned off. I called the water department -- though I am not sure why since they are only open 9 hours/week (not a joke, serious) and their last time to work is 12pm on Wednesday. Oh, also, there is no answering service, not even an old fashioned machine. However, I guess the pain was too much and I gave it a whirl only to find them in. They told me that they were getting calls from all over town and they weren't sure what was wrong. They also couldn't get in touch with the guy that fixed it. I admit to panicking a bit.

Thankfully we keep a 5 gallon jug of water for our water dispenser just in case. We needed it because I just given the kids a tube feed and had dirty supplies. Did I mention I felt horrible?

Hubby took over all the kid care and I went to bed.

And then he went to bed because ... he worked the next day. This means on Saturday and Sunday I would have the kids by myself while I was sick.

What's a Mom to do when sleeping all day can't happen? I went BASIC.

• We all stayed in pajamas all day long. I knew I didn't want to change, and I really didn't want to help the boys find underwear or whatever piece of clothing they suddenly couldn't find. 
• We ate simply. Sandwiches, cereal, and other quick foods were the order of the day. Yes, I still had to tube feed. So, I used baby food pouches that I could just draw up and push. 
• I made camp in the living room. I gave the boys the floor in the morning as I laid on the sofa. By mid-afternoon I stretched out in the floor and gave them a DVD and the couch. If I could see them all was good. This made it so much easier. 
• I let go of some of my rules. Juice twice a day never happens. But, my kids can pour their own juice so have at it. When Mom is sick, rules have to take a back seat. 
• I allowed every toy and book imaginable to surround me as I rested. Toys were everywhere. I figured I could demand their clean up after I didn't feel like I was hit by a Mack truck. 
• Take out was also on order. I called my husband and asked him to pick up something for us. I texted him what we wanted and waited right where I was under the covers on the floor until he got there. 
• I let hubby take control. Shocker, I know. Us women have a hard time with that one. But he's smart, has a job that requires mental and physical agility on a daily basis, and he has a very high IQ. He can handle things like taking trash to the kitchen from dinner, getting the kids in pajamas, helping with tooth brushing, etc. He did great. I didn't have to move. 

I think all of these boil down to simplify, simplify, simplify and ask for help. We just can't do it all. And, the more rest we get, the quicker we will heal. Ladies, it's OK to slow down and allow others to do things for us when we are sick. It also blesses them as they are able to serve us in our hard time. Allow that blessing to come to your family. 

Tracking Problems

Our sons both have feeding tube which obviously means feeding issues. Getting enough calories is one small part of tube feeding. We also have to make sure our sons have all their nutritional needs met, as well. And that part is a pain! After asking on my board on Facebook for tubies who use a blended diet, I have the answer.

I downloaded the Cronometer app on my iPhone, entered my sons information, and off I went. Now, if you have multiple people to follow you will need to create two accounts. I simply made two gmail accounts that were VERY similar and all I have to do is make the very simple change on the login page and I am in the other son's account. Right now you can't track multiple people. I hope they will change that eventually.

There are a few screens at the simple touch of the screen. With one touch you can add a new food. You can either type in the name of the item or scan the barcode. You will see every food, their calorie content, and how much that your child ate through the day.

Once you have entered things like their food intake, biometrics, etc, you  can click on "Trends" to see nutritional and biometric reports for any time frame you want. It defaults to the previous 7 days, but changing that setting takes seconds.

You can also touch "Macros" and see a quick synopsis of calories, fats, carbs, etc.

Last, and my favorite part, you can click on "Targets" and get a detailed breakdown of every nutritional need your child has. This enables you to make recipes that are tailored to get all of their nutrients each day, lets you follow trends to see where there are deficits, and makes sure you aren't getting TOO much of something that might have negative effects.

You can also add in foods that the huge database doesn't contain. So far I have only had to do this with two items and both were smaller brand organic baby food pouches. But, once I enter the information I never have to again as I can scan the barcode of the package and it will pull up what I entered before.

I can't recommend the Cronometer app enough. Just check it out, you won't be disappointed.

Short and Sweet

12 years old.

1 year from 13.

365 days from the teen years.

Add in Autism.

It is already kicking my tail.

That is all.