An Open Letter to the Parents of Charlie Gard

Dear Chris and Connie,

I remember when I first read your story via a link on twitter. It has been maybe 2-3 months now. I remember the emotions that welled up inside my own heart as I read about your precious baby and his battle. I remember looking at my own boys. I have a 2 year old and a 4 month old. I saw my babies in the picture of your son. I cried. I cried so hard. From that moment my heart, my thoughts and prayers have been with you and your sweet little boy.

The phrase “I’m sorry” seems such a shallow thing to say to you both in this time of immense heart ache and pain. I could add a couple hundred “so”s in between  the “I’m” and the “sorry”. But somehow I feel that would make the phrase even less meaningful. So I will have to stick with I’m sorry.

I’m sorry your little boy was the 1 in a million to be diagnosed with this illness.

I’m sorry that for whatever the reason, the Dr’s in London were not able to treat him.

I’m sorry you had to watch your little boys health decline.

I’m sorry the courts and hospital would not let you leave even though you had raised your own funds to save your baby boy.

I’m sorry that it took the US congress so long to make you a US resident so we could have some power to bring you to New York.

I’m sorry that so much time was wasted in court proceedings and bureaucratic nonsense that your precious angel slipped into a state of hopelessness where there was no return.

I’m sorry that it doesn’t look like you will even be able to take your baby home with you to let him go in peace. But that he will be stuck in the hospital that held him a captive while there was hope.

But let me tell you… What I am the most sorry about… I am so sorry and so angry that your rights as the parents to your child were stripped from you by a bunch of damn suit and tie government bureaucrats that most likely went home to no kids or healthy kids every night. People biologically and emotionally removed from your child got to make the choice about the most important thing about him. His life.

As Charlie’s parents you had every right to do everything within your power to save his life. I would have done exactly what you did. And I would have fought like hell. Exactly like you did. I know that because of your story being known all over the world at this point lots of people will have their own opinions about what you should or should not have done. ANYONE who would side against your decisions for your baby is not worthy of second of your thoughts. Connie, no one criticizing your choices for your baby carried him for 9 months in their body or pushed him out during hard labor. Anyone that doesn’t 100% support you both in your choices  for your son and in the grief you are/ will be going through is not worthy of your time.

And for every jerk out there on social media that thinks they know how you should have lived your life, there are thousands that stand with you.

You are in my thoughts and prayers as you prepare to send your baby to the angels. He will be safe. He will be free. He will be in no more pain. He will be able to see and hear. He will run and jump. He will be watching over you from above. He will spend all eternity with Jesus and the angels. And he will know that his parents fought for his life until the end. He will love you forever.

I hope and pray you will continue in fighting for the rights of parents to love, protect and do whats best for their children. I know you are not the only parents that this kind of tragedy has happened to. The all knowing government courts and officials put you through hell on earth. So you give em hell right back. Charlies Army is behind you.

From one parent to another, with love, sympathy and a really big hug,

Kate ❤

Open Mom Diary #1

I went to the grocery store with my youngest son. It was such a peaceful experience. I arrived at the store and put my sweet baby boy in his carrier. I got a shopping cart with a cup holder and proceeded directly to the Starbucks strategically located at the entrance to the store. I walked through the store sipping on my favorite drink and picking out food for my little family. I was silent except for the periodic whispered “I love you” to my baby followed by a kiss on his head.

I did not have to explain to a 30 lb toddler to put his feet in holes for his legs in the grocery cart while holding him in the air. I didn’t have to talk about all the vegetables we walked past. I didn’t have to explain that you can only have 1 free cookie or no free cookie if a sweet had already been had. I didn’t have to rush to keep jelly jars on the shelf as Godzilla toddler thrust his arms out as the shopping cart went down the aisle. I didn’t have to tell him to sit down in the cart. I didn’t have to tell him to stop grabbing the candy in the check out line and I didn’t have to say “No you cant hold the eggs.”

It was glorious. But I felt guilty…

I did not feel guilty for reveling in the break from my toddler. I felt guilty for not talking to my baby. I felt guilty for the silence.

Before my first son was born I read an article somewhere on the interwebs about a study that had been performed on babies through their toddler years when it came to adult verbal interactions. I can’t for the life of me remember where I found this article. I took from it that verbal communication is absolutely necessary for your childs development(duh. I don’t know why I needed to read this online) and that there are parents out there that do not talk to their kids which messes them up for life. I determined that I would fill my childs ears with the sound of my voice constantly and he would be an excellent communicator by the age of 2.  I did. And he is.

I talked to my son ALL DAY LONG. EVERY SINGLE DAY. I explained everything we did and everywhere we went. I sang or talked to him continually even if there was really nothing to say or talk about. He now talks. CONSTANTLY. This probably has more to do with him being a toddler but because of my neurotic ideas about not wanting him to be intellectually deficient, I missed out on the silent moments.

So here I am. Baby #2 and I feel like I am short changing him on my time and attention. I talk so much to my older child because he is always talking that when I’m alone with my youngest the last thing I want is words to break the silence.

There is not much of a conclusion to these thoughts. More of wondering musings of how to parent two instead of one. Now that we have hit the 6th month its easier to interact simply because he is more attentive. I include him in the conversations about Thomas the train, towers, bulldozers and cookies. But I also don’t want to feel guilty about enjoying my quiet times with him. The silence will only become more scarce in my house. I didn’t cherish it with my first. I wan to cherish it with my second. I want him to know I don’t love him less because I’m quiet.

I am going to have to accept that I will not have the same kind of time with my youngest that I did with my oldest.  So from now I want to intentionally get my alone time with him. So I can talk to him or just be silent.

One thing is for sure I can’t spend my periodic moments with him feeling guilty. That is a waste of my precious time with him.

 

 

 

I am not the Compassion Police

Ok Ladies and Gentlemen. I have done the work for you. We will refute the top health care myths (along with a stupid meme) that are circulating the facebook, twitter and news networks. We will do this using… (Get ready for it…) !!! H.R.1628!!! Don’t know what that is? Its the healthcare bill.

First of all I would just like to say that these people up there on the hill wearing their expensive suits, driving expensive cars and drinking expensive coffee were elected for us and buy us. I should not have to wade through lawyer jargon to figure out what you are doing with my money and my freedom. I’m a relatively intelligent person. I troubleshoot aircraft electrical systems people. But for the love of God release these bills that affect me in normal person speak. please. If you did that there probably would not be a need for this ranting post.

Here is the meme that has sparked my rant. I like to follow and listen to all kinds of people with whom I disagree (#Idontneedasafespace). It makes life more interesting and its way easier to have a civil discussion when you actually know the other persons argument. I don’t usually argue or engage much on social media posts. I just take in the information. But every once in a while an argument is so stupid that my brain cant take it and I have to call it out for what it is. BullSh*t.

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I picked this meme apart in a comment on FaceBook but I think this meme encompasses the top myths being pushed to combat the new healthcare bill. I will address the whole stupid gospel and christian comparison later but for now we will focus on the whole poor and sick thing.

 

Myth #1 Preexisting conditions won’t be covered.

This is just a flat out lie and flies directly in the face of what Amendment #33 says. Allow me to quote the summary for you. “Health insurers would not be allowed to [deny coverage,] discriminate based on gender or [limit access based on] preexisting conditions.” There. Any questions? If you would still like to argue that point you may click on my link for Amendment#33 and then click the pdf of the 8 pages it took to say exactly what I quoted from the summary. Good luck.

Myth #2 Medicaid is getting cut.

Not exactly. Medicaid EXPANSIONS are getting cut. This is kinda hard to break down but Im going to do my best so hang with me. As it is right now able bodied working adults under the age of 65 can get medicaid if they make between 133% -400% of the poverty line. That means you could have a fully functioning, single 25 year old man making 40k a year on medicaid. That’s going away now.

As it is right now, medicaid has to provide coverage for children at 133% of the poverty line or below. Most states provide medicaid for children up to 400% of the poverty line but the requirement was 133%. That is changing to 100%. Medicaid must cover anyone under this threshold. States can still choose to cover higher.

“Essential benefits”(include ambulatory patient services, emergency services, hospitalization, maternity and newborn care, mental health and substance use disorder services, prescription drugs, rehabilitative services, laboratory services, preventative and wellness services, and pediatric services) are being eliminated as a requirement for all medicaid and private insurance. This is happening in a form of a waiver system which they will only be granted if they can prove the “waiver will reduce average premiums for patients, increase enrollment for residents, stabilize the state’s health insurance market, stabilize premiums for individuals living with preexisting conditions, or increase patients’ health care plan options.”  What this means is that if your state goes through with this waiver you don’t have to be covered for things you don’t need. Like I don’t need coverage for substance use disorder and my husband doesn’t need maternity coverage. Neither private insurance or medicaid has to cover that if they can prove that by not covering it they have made the market better as a whole.

Medicaid will also have spending caps. That means instead of having constant cash flow the program will be given its lump sum for the year and be told to chose wisely.

You can click here and here to read the actual bill amendments and summary where I am getting all this info from. Please don’t just take my word for it. We NEED an educated populace.

Myth #3 People will die!

This is just ridiculous. Sanders says “When you throw 23 million off of health insurance, people with cancer, people with health care, people with diabetes, thousands of people will die..” These numbers are from the Congressional Budget Offices analysis of the bill. They are wrong. They are off by about 13 million. About 10 million is the actual number 7 million of which would not lose coverage. They would drop their expensive plans because of the mandate being gone. That leaves 3 million losing coverage through medicaid. Not poor sick woman and children. People who don’t need it. Like the family of 4 making 100k a year. Its asinine to make the jump from “people above the poverty line won’t have medicaid” to “people will die”.

I want to spend just a little more time here. Lets say your a diabetic that is at 200% of the poverty level (for a family of 4 that’s about 40k a year.) You lose coverage through medicaid. Because preexisting conditions must be covered you will be able to find coverage through the market place if you can not get it through work. The bill has allocated about 15 billion dollars  for you to be able to have an affordable premiums and coverage. And there are still subsidies in place for sick, poor and old people. What does this mean? You probably are not going to die. Even if nothing works for you and your not insured from that 15 billion dollars being injected into the market place you have a safety net. Emergency rooms cant deny treatment. So if you are in a life or death situation with your diabetes you can go to the emergency room. Yes that will be a big bill but hospitals have financial assistance!!! In the state of Iowa, if you are below 400% of the poverty line you qualify for financial assistance and significantly reduced costs. And if your below 200% you can get out your bill completely. No citation here because this is personal experience and a conversation and the financial aid coordinator at the hospital where I delivered my son.

So your not going to die. These are scare tactics.

Myth #4 Planned Parenthood will be defunded!

Yea… for a year. That’s it.

Myth #5 Anyone who doesn’t like obamacare hates poor and sick people.

I want to spend sometime here as well. We will bring the meme back in from earlier. This whole idea is generally aimed at republicans for making the changes to the health care bill. The purpose of these changes are to cut spending and some of the regulations. The whole point is to try to make things more affordable. Republicans (in general) believe they can make things more affordable for everyone by cutting regulations and taxes. Democrats (in general) believe they can make things more affordable for the marginalized by taxing people with more money. Their favorite phrase is the top 1% (that is anyone who makes about 200k a year or more.) Democrats like to say that we must care about our fellow humans and a way to do that is redistributing wealth to those less fortunate. If anyone opposes this they hate poor and sick people. Just because someone opposes government mandated theft (which is what wealth redistribution is) does not mean they hate sick and poor people. This is just asinine. Both parties want people to have affordable health care. That’s why they stuck their hands into the bowl to begin with.  They have 2 different ideologies to achieve that goal. Both could work. Demonizing the other party that you don’t agree with accomplishes nothing.

Now the whole gospel and claiming Christianity thing… *sigh* I love the fact that the bible is used to virtue signal constantly and chances are people sharing their bible meme for political reasons have not opened their dusty NKJV bible in decades.

Yes! Christians are supposed to love the poor, sick and marginalized. Yes Christians are supposed to be kind, compassionate and generous with our money! Yes Christians are supposed to show Christs love to all! This is all over the New Testament and Old. NOWHERE does it say that Christians are supposed to force others to behave in a kind compassionate and loving way! NOWHERE does it say that we are supposed to purposely take money from others and give it away in the name of compassion! I am a Christian. I love my Savior Jesus Christ. I am in charge of my compassion, kindness and love. I am not in charge of forcing the guy down the street with the 2017 Audi to give more to charity or buy groceries for a single mom with 2 kids. I SHOULD DO THOSE THING IF I AM ABLE! Christians are not the compassion and kindness police. Therefore, to use this argument of kindness, gospel and Jesus to support theft (which is preached against in both testaments of scripture) is a complete misuse of Gods word. So just stop it.

My personal opinion is this health care bill is crap. I want government out of my health care completely. That’s not their job. But apparently alot of people want their congress person to dictate their health care so I guess that’s here to stay unfortunately.

Ok I’m done. Sorry for possibly destroying a narrative… Sorry for not agreeing with your Jesus argument… Please just please… think for your self. Read the information for your self before you jump on the meme bandwagon. Work together with people of different opinions. Question everything.

 

So Where is my Parenting Manual?

Today my son had a tantrum. You know like every toddler and like everyday. This is the following conversation that took place with my self and with my son simultaneously:

“Caspian you don’t need to have a tantrum about this” *I guess I should count him instead of reasoning with him. Its not like he is going to say “Oh golly mom your right!”*

“Caspian I’m sorry your disappointed” *I want to have empathy for him*

“One.” *He is yelling louder. Should I just take him straight to time out?*

“Do you want to go to your room?” *Like he is going to say yes you idiot…Should I do a time in? Isn’t that where I just hug him and tell him I love him when he is naughty? Ok he is just yelling louder and stomping.*

“Two” * In the 123 magic book it says to not reason with them. Maybe I have not given enough choices today. Love and logic says give choices… and reason?*

(Toddler picks up toy to throw at 5 mos old)

“Don’t even think about it!” *Should I spank him if he hits? It doesn’t make sense to hit him for hitting someone else*

(Toddler throws toy at 5 mos old)

“THREE!!!” *There is no way on earth he should have a time in for hitting his brother*

(Picks toddler up and puts in room for time out.)

All the while still second guessing my self about my discipline methods. This happens in my house EVERY. SINGLE. DAY.

The reason I decided to share this story is because of a video I watched a few days ago from prageru. Here it is for some context.

 

 

I read the comments. Always a mistake. The guy in this video is a child physiologist and an author. Everything in this video is  EXACTLY how my mom raised me. She did a pretty good job. I am not emotionally scarred and I am a functioning, contributing human in society. Yet the comment section was filled with people basically saying that this guy did not know what he was talking about. If the professional (according to the people in the comments) doesn’t know anything about kids and discipline how can these people be so confident in their chosen methods… and more importantly… WHAT THE ACTUAL H E *DOUBLE HOCKEY STICK AM I SUPPOSED TO DO???

But for real this is a serious question that I wrestle with everyday. I have read 3 different parenting books, watch these kind of videos that come up on my social media feeds and read the comments. Everyone claims there method works  and that it is best. Some times I find myself going through several different techniques a day. But that is bad because its not consistent (or so I have heard). It literally doesn’t matter how many time outs, promised rewards, toys taken away or scoldings he gets. Sometimes he does the same naughty thing 12 million times in 37 seconds.

Its not like I hadn’t picked a parenting method before I had kids. I was not planning on winging discipline. I was the perfect parent before I had kids…

To be honest, I like what this professional had to say in this video. I don’t know if it was because it seemed easier to me then what I am currently doing or if it seemed familiar because its how my mom raised me. So I did what most 27 year old moms do. I called my mom (I swear my mom is like the smartest person in the universe). I told her my woes and struggles. And like most moms she had sound and wise advice. She told me that the “professionals sort of know your kid, the people in the comments know nothing about your kid and you are the professional when it comes to your kid. There are different methods. Some work well, some work for some kids and some are just stupid. Only you know what will work for your kid and its ok to spend some time figuring it out.”

I will say this. I know for sure that my attitude and demeanor affects my sons behavior. When I am cheerful, calm, patient,kind and engaging with him we are much more likely to have a successful day. If I am short, irritated and focused on what I want to do… oh boy… its world war 3 in my house until I check my attitude. And cookies. Cookies make everything better always.

I guess I have no real profound conclusion to this post. More of an open diary on the struggles of a mom with young kids. I hope it encourage someone else who is wondering where the heck is the manual on parenting. Your not alone. 🙂

Get a drink (coffee, wine, chocolate milk whatever) put your feet up and know that you are are the professional with your kid.