Wednesday, November 25, 2015

Happy Thankgiving!

I just wanted to take time and thank each and every one of you for supporting our family through this blog and the X Linked Facebook page!
Your love and support have given me strength to keep going and hope for the future. I know this time of year can be very hard for people with disabilities, those missing loved ones, and those dealing with everyday stress, but I want you to know that you are in my thoughts and prayers during this holiday season.

Our year has not been stress free, but we still have a lot to be thankful for. We have all been pretty healthy. We have a roof over our head and food in our belly's. We have toys all over the floor, and piles of laundry. Our house is rarely quite and we have beds to sleep in. Just recently, we finally have a really good set of nurses to help care for our oldest son. We have each other, and most of the time we even love each other!
Here is to all the things we can be thankful for... Happy Thanksgiving!
As always; if there is something you would like me to pray for, please let me know. I want to help ease any pain you may be feeling during this holiday. 

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Monday, November 16, 2015

What's the big deal about Starbucks red cup?

Normally I don't have the time or energy to post anything about what is going on in the news but this really bothered me.


OK people, look it's a cup! I am a Christian and I love God. I hope I am living a life that glorifies Him, but this is a cup...
I am not offended that they stopped putting snowflakes or trees or whatever else on this cup. I don't care what they have on the cups, and neither should you.
If you can afford one of these cups, consider yourself privileged. Some don't have enough money to buy a can of corn.
I personally chose to never buy from Starbucks anyway! Did you know that they contribute money to Planned Parenthood? (Is planned Parenthood doing good or harming babies should be a topic for a different day, but not today) As a Christian, I am more concerned with innocent babies being killed every day, then I am about a red cup.
As a Christian, I am more concerned about the thousands of people that go hungry every day, right here in the good old USA.
I am concerned about the billions of dollars being spent by our government. (Democrats and Republicans are equal in my book as far as that goes)
I am concerned about all of the violence that is happening all over the world. I am concerned about human trafficking and children being sold as sex slaves. I am concerned about 2 year old's that got on a shady boat in hopes for a better life and ended up loosing theirs.

I am concerned about the environment and what we are leaving the next generation.

I am concerned with what  is going to happen to my family when I am gone.


Why is there such an uproar about a cup? Why are we not trying to fix any number of other things? Why, as Christians, are we giving any attention to a cup when there are so many other things that need our help and our prayers.

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Thursday, November 12, 2015

Here is the equipment we love, and why you should too!

In the life a special needs, we get used to many different kinds of equipment. Monitors, feeding pumps, standers, gait trainers, AFO foot braces, hand splints, helmets, and special chairs.
I had NO IDEA that any of this stuff even existed until 3 1/2 years ago! I am always learning about new things and new companies...most from other parents. 
I thought I would share a few of our favorites and the reasons why we love them...
We use a wheelchair called a "Kid Cart"
  This can come with different colors and accessories. The seat lifts off and the frame folds down. Our biggest complaints are that we can't use the seat as a car seat which makes it bulky, and we were told that the 5 point harness is not crash tested therefore we can't transport him in the chair in a vehicle. This means we still have to transfer into a car seat and find room in the car if we want to go anywhere.
Otherwise we love it! It offers good support, has a few different harnesses to hold him in, and is fully adjustable so it can grow when he does. We got a bunch of accessories too. We got a canopy (like the one pictured), a lap tray, an attachable IV pole, and a rain cover that covers the whole chair with him sitting in it. 
We have also used it for other things, like floor time, and shopping...

And playing on the playground...
The seat is a bit heavy, even by itself, but he loves being able to go places and we love seeing him smile!
The newest addition to our "stuff" is a supportive bed called the Comfy-Lift bed.

We had tried rolling blankets, blocks under two of the bed feet, and different wedges to get him at the recommended angle for his night-time tube feedings and his Bi-pap. But nothing worked well. This has helped him sleep better and be ready to start his day. This also helps the taller nurses that care for him get him in and out of bed without straining their back. My only complaint is that I can't cuddle with him while laying in bed.
Insurance covered ours and may cover yours too! In their own words...
Does your child suffer from... 
Acid Reflux

Sleep Apnea
Cerbral Palsy
Sleep Breathing Disorders
Gastroesophageal Reflux
Choking or Gagging
Esinophilic Esophagitis
Aspiration Pneumonia
Acute/Chronic Respiratory Issues
G-Tube Feeding

Why chose us?
The Comfy-Lift™ Bed has a patented design that features an elevated head rest to lift the upper body of the sleeper. This elevation will keep stomach acid out of the esophagus, as well as assist in breathing. 

Since children tend to roll off the side of the bed during sleep, a side barrier has been strategically implemented on each side of the mattress to create a concave design that will cradle the child in the center of the bed.
The Comfy-Lift™ Bed is designed with the growing child in mind, using a foot-adjusting feature to account for growth of the child. This feature makes the Comfy-Lift™ Bed a long-term form of treatment for your child's sleep-related disorders. 

 Our mission here is to help the most helpless among us - the children, as well as adults who suffer from sleep breathing disorders. All children deserve the highest quality of life and healthcare possible.

If you would like to know more about the kid cart talk to your doctor or click HERE.
If you would like to learn more about the Comfy- Lift bed click HERE


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Sunday, November 8, 2015

So, this happened...

I could hardly believe my eyes! The occupational therapist came to our house (like every other week) and wanted to work on trying to get him to sit on his own.
Well he did!

For 3 minutes!
On his own!!!
Now for a boy who couldn't be carried like a normal child for over a year because he didn't have enough head control or trunk support, THIS is AMAZING!
For a long time we had to cradle him in both arms, or have him upright but have both arms on him to support his head. For a little bit, I grieved. I was envious of parents that could just carry their 8-10 month old into a store, on their hip, and plop them into a cart seat like it was no big deal. I didn't think I would ever be able to do that.
I still can't. He now weighs over 30 pounds and still doesn't have the endurance to last a whole shopping trip; but that's ok. I have learned to not compare our life, him, or myself to any other family, kid or mom that I see because I know that none of them have gone what we have gone through...(except for the other families with kiddos like him that I know through Facebook)
For him, at 3.5 years old, this is HUGE and I am so proud of him. He has come so far and we have seen him grow at an even faster rate now that he is in school. We love you buddy! 

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Thursday, November 5, 2015

To my baby that won't stop crying,


 To my baby that won’t stop crying, 

Me and you are not so different these days. I am not satisfied with my situation and cry a lot too. 

I look to someone else to fix my problems. When God gives me a solution that He thinks will do the trick and make me satisfied; it doesn’t work. I cry more. 

When I lose my faith and don’t trust him, I get scared and cry. When I can’t see the plan, and think that I know what is best, I end up crying because it’s not right.

 It is only when I completely surrender my own ways, and just be held tight, that I am truly comforted. When I am held close, and can feel His arms holding me tight, that is when I am calm. That is when I am at peace and can slowly drift off to sleep, knowing that everything will be ok. 

So go ahead baby and cry; I will cry with you. I will hold you tight knowing that I am also being held tight. Everything will be ok. Trust me; and I will trust Him.

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Tuesday, October 27, 2015

Then there are good days

You ever have those days when you feel like super woman/man? 
 I have had a days like that.
Me in my Super woman cape :)
(It's not about how you look on the outside but how you feel on the inside. :) )
I was super excited because I had gotten the company we order our son's food through to fix their order screw up, by sending one man on a 6 hour round trip drive to deliver what they forgot. Then we have been trying to get a part on his wheelchair fixed for awhile now and that company picked the wheelchair up in the morning, dropped it off in the afternoon and had it completely fixed! That same company was also able to get the correct headrest for his chair, one I had asked for over 6 months ago but the wrong was ordered. They also brought a new bed that I had been also trying to get for over 3 months!
The next day I felt like Super Mom. I made this for our middle child to play in...
Can you see me mom?
Then I got a bunch of house work done like 3 loads of laundry (washed, dried, folded, and put away!), cleaned the bathroom, did the dishes and invited friends and family to the Baptism that is taking place this weekend for our youngest child!

Playing outside
Then, it was such a beautiful day that we had to go out and play! This really was the highlight of my day. We got some work done but took time to play on the playground and bump in the yard. Hearing my kids laugh will bring me out of almost any kind of funk I may have been in the day before.

Life is full of ups and downs. I seem to go through them on a daily, sometimes hourly, basis. I hope you are having a good day today too.

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Friday, October 23, 2015

One of those days

 Ever have one of those days? Where one little thing can throw your whole day off?
I am having one of those days.
The kind of day were you don't have the time, energy or urge to make chocolate chip cookies so you head straight to the good part anyway. You grab the chocolate chips and eat right from the the closet so you don't have to share and no one sees you.
  •   It started with our nurse having car problems and not being able to come in to work. (I really think I would go crazy if I didn't have them to talk to and today is proof. I am a mess.)
  • Then the hubby and I NEEDED to talk about money stuff because tomorrow is pay day. (Don't we all just LOVE those talks? Kind of depressing)
  • Then the hubby left me alone with the kids and went to work. (Yep all 3. Most days this may not be an issue, but I feel so alone when I don't have some adult to talk to)
  • In an attempt to do the "grown up/responsible" thing, I asked a friend to take the middle child so I could get some work done on that money stuff. (Sooo, you know, I am writing this blog post instead)
  • The middle child is sent off and 10 minutes later I am bawling my eyes out because I miss him and his cuteness. (Even though, when he is here, he can be in the way and I think about how much cleaner my house would be if he wasn't around taking every toy out of the toy box)
  • Missing my kid got me thinking about a family that I have only met online, but they feel like blood relatives, that just lost their 6 year old son that has the same condition as our oldest. (My heart breaks from them and I think about how we may know that kind of loss someday too. I think about how much I am missing our middle child, and I know he is having fun at a friends house. The tears flow harder now as I reach for that bag of chocolate chips)
    Life is hard. Life is messy. Sometimes our lives get thrown off course and we have NO ONE to blame, not even ourselves. I am having one of those days.
Well things are ok now. Turns out, my dad came over and bounced the baby so I could still get the money stuff finished.
This day got me thinking though. Thinking about how hard life is on some days. Hearing the news of any boy, like my oldest son, dying hits me hard and affect me for days...and I still can squeeze my boy. I can still hear him laugh. I don't know how I will survive the day when we have to bury him and I have so much respect for the parents that have gone ahead of me. (I know, I know prayer is powerful and maybe God will look down on our boy and let him out-live us, but the reality is that this disease SUCKS and it has taken too many boys way too soon, and it will probably take our son before we are ready to say good bye)
I got thinking about our money situation. No one like to talk about money issues to their friends or family for fear of being judged and labeled as a failure. There are millions of people filing bankruptcy every year through no fault of their own. Our money issues steamed from me being forced to quit my job when our oldest was born and we were farming. That year was a bad year for farmers too. It was a drought, the amount of money that we were getting paid for our milk was at a 10 year low, and the cost of feed for the cows was at a 10 year high (or something like that. You get the picture was a bad situation) We are still trying to pay off those bills from 3ish years ago...but no one wants to talk about it. And some people think that we should not ever take a night and go out to eat. We should stay home and pay our bills. Well we work really hard and need to stay connected to each other and NEED a date night at least once a year! Most people in this country file for bankruptcy because they got sick. THEY GOT SICK! I am sure they didn't want to get sick. I am sure that they would have rather do anything else besides going to the doctor all the time. Why do we judge these people? Why do we think that they should just stay home all the time? and why can't we talk about it?
Then I got thinking about what a bitch I feel like on some days. Why can't the companies that supply my son's food or fix his chair or supply his medications all walk a day in my shoes? Why can't they just do their jobs? Why do I have to call three times and yell in order to get one thing right? The process I have to go through EVERY MONTH has made me a mean and bitter woman who thinks that no one can doing anything right, unless they are getting yelled at. I hate this. I hate who I have become and others are starting to notice. I am mean and very intolerable with most people in these companies, even if I am in a good mood and they are being helpful. I wish I wasn't like this. I wish I didn't have to deal with these companies!
Then I thought about how I want to be a better others, to my family, to my husband, to myself. So I signed up for an online "Improve your marriage in 5 simple steps." and I bought books at the woman's conference I went to recently. They say something like "God is here for you, You will get through this. It will be better." I love all these things. I try to make time for these things. I think "I need to listen to these things so I can get to be a better person. I need to make time for this" AAAnd then I go and sit in my bed to read out of this great book or listen to this 15 minute video and I fall asleep. Lets face it, we all do a lot in day. Whether we have kids or a 9-5 job; we are busy people and try to get so much done in one day that by the end of it we pass out...or lay awake because we have to much we are thinking about. Either way, we are tired and sleep deprived. 
So many thoughts. So much on my plate. So many frustrations. These are just a few of the ones I am thinking about this day. It is time to grab that bag of chocolate chips and head to the closet. Don't even get me started on health care, the news, humanitarian issues, politics, animal abuse, or weight loss; those are for a different day. It really is amazing that we can even function as adults. Give yourself a high five and a pat on the back, because you deserve it! Yep, I know tomorrow will be better. I will get through this day. I will deal with the equipment company tomorrow. I will try and read one more page from one of those great books I have. I am thankful for the few good things that have happened today. I will. And you will too. We will get through this together. Please don't feel ashamed of who you are. Please don't curl up in a ball and try to hide day or one week, ok, but please don't stay there. I love you. Other people love you too, even if it doesn't feel like it today. 
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