Life Updating: Moving Forward

I feel like it’s been forever since I sat down to post. So many things have gone on in the last few months, both financial and personal, and my brain has been living in constant overload. If I am being honest I feel like I’ve been living in a cloud of guilt and shame that my financial goals, as well as my household and family goals, are not coming to fruition. And it’s lead to a revolving door of anxiety and depression.

For example, while I am happy to say that we have not taken on any more debt since May, it comes with a sense of shame that it took me that long to get my husband on board with doing so. And on top of that our debt has still increased from then to now because of interest and such, and we’ve also had to pull money from savings several times since May to make ends meet.

We are making progress in our income, the hubs’ business is now up and running and doing good, we started it with no debt, and were even able to pay ourselves a bit each month since our second month being open. I am hopeful that this month we will be able to fully fulfill our budget with income from my job and the business, meaning no more money coming out of savings.

On top of finances, my house is a mess, and my kids are constantly going insane. Flu season is kicking our butts this year. We battled a PICU stay with Austen due to the adenovirus in November, influenza A in Atlas right after that, and so many rounds of the norovirus that I can’t honestly count. I’ve become so desperate I no longer let people wear shoes inside and everyone has to use hand sanitizer as soon as they come in, then I sanitize doorknobs each day. But the everyday clutter? It has me beat.

Basically this a whiney, I can’t do anything right kind of post, and I’m sorry. I want to be upbeat and happy all the time, but lately, I just can’t.

What I can tell you is that I am taking steps to get on top of things. I am human, I fall, we all do. I’m a real mom, a real person, and if you’re wanting to read a blog about a perfect wife, with a perfect house, and perfect kids and finances…well you need to look somewhere else. I will always try, but I will fail a lot and I know that it’s life.

So what am I doing? A new approach to therapy for one. I switched to a therapist who focuses on CBT (Cognitive Behavioral Therapy) to get ahold of my anxiety. I think that will be a big thing to allow me to focus on other aspects of my life. If I can get past my ‘stinkin thinkin’ I can move on top more positive thoughts and move on with my days instead of spending all day fixating on one mistake and the next on all the things I didn’t accomplish while I was fixating on that thought (I told you it was a brutal cycle). I’m also working on my internal health. I’m exercising, and making sure to take my vitamins, I’m eating healthier, and taking time to myself each day. I’ve also found a natural antidepressant supplement that I am giving a try, to hope that takes the edge off of my really bad days.

And thanks to marriage therapy (yep, we’re in it and I’m not ashamed) my marriage is starting to improve. We’re on the same page with our finances, we’re going over our budgets and spending together, and we’re starting to get on the same page with parenting as well. Thanks to our awesome therapist we are on the same page in so many areas, where before I don’t even think we were reading the same book…or sitting in the same library. It’s amazing to see what progress can be made when we are working together. Who would have thought?!

Finally, to jump start my new mindset I’ve given up extra spending for Lent. No more picking up this or that in my Target trips. So far I’ve been successful, although I’ve mostly been avoiding going shopping. I did actually go to Target on Sunday and come out with exactly the six items on my list, nothing more. I was very proud.

I think 2018 has some pretty good things in store for me, despite all the muck of the last few years. I’m excited. I’m persisting. And I’m moving forward into a brighter future.

 

 

Experiences Over Gifts-Why We Stopped Spending Money On Birthday Presents

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Last year my husband and I made what many people think is a pretty crazy decision. We decided to stop buying our kids birthday presents. For real. They might get one small present on their big day, Austen got a doctors kit, for example, but other than that not much. Not much material at least.

You see we used to go all out for the kids birthdays. Big parties, lots of presents, the works. But all that money was wasted. It was money down the drain and if I’m being perfectly honest my kids weren’t getting a lot out of it. So we decided to change our mindset, we decided to focus on things that could last. You see, those parties were over within an hour, the toys broke within a week. Heck, some of them didn’t even last 24 hours.

These things that we spent so much money on didn’t last. If we were going to be forking out so much, we wanted it to be something that would stand the test of time, tangible or not.

We decided that memories were the thing to focus on.

So we made the choice to shift our perspective, we chose to believe that our children would get more out of experiences than they would out of toys that did not last.

For Addi’s birthday we went to Great Wolf Lodge.

For Atlas’ birthday we took him to see Thomas.

For Austen’s birthday we went to the Denver Children’s Museum.

Each of these things did cost us money, but the joy on our children’s faces, and the memories they talk about months afterward are worth so much more than those toys. We are choosing to give our children something they can take with them into adulthood.

Something that will never leave them.

Choosing Seizures

Last fall Austen went 48 days without a seizure, but as January turned to February she was having seizures every four days on average. On March 13th we decided to try another non-traditional approach and admitted Austen into the hospital with the hopes of transitioning her onto the ketogenic diet. The diet is hard, with everything that goes in her mouth being carefully weighed an measured, but we had high hopes that this would help our girl.

That was not the case.

Within 12 hours her potassium levels skyrocketed and she developed a cardiac arrhythmia. We stopped the diet immediately and were told it was simply not going to be an option for her at this time. I was devastated. We had made the difficult decision to put her on this diet with the hopes that it would help her, instead it very likely could have killed her.

I want to pause here to say the her reaction to the diet is super, super rare. Her dietician had never seen it, and the epileptologist had only seen it once in his career.

Ever since the fall when Austen’s 48 day seizure free streak ended people have been asking the same few questions on repeat. These questions picked up momentum in January when the seizure frequency picked up, and again a few weeks ago when the diet failed.

“Do you think it’s time to add another med?” “Do you think it’s maybe time to stop this whole cannabis thing?” “Have you thought about that new med trial?” and my personal favorite,  “Maybe it’s time to consider Onfi?”

My answer to all of these is NO.  If it comes to choosing between another drug and all of it’s side effects, and choosing seizures, I will choose seizures every single time at this point in our journey.

Why? To me it’s simple:

With Austen’s Cannabis nasal spray her seizures last less than 2 minutes on average, with only Diazepam and Clonazepam her average was about 11. That is a huge difference. In addition to that new meds are highly addictive and come with new side effects including, dizziness, sleepiness, nausea, slurred speech, aggression, and hallucinations.* Shorter seizures with fewer side effects gives us the opportunity to give Austen a life worth living. Before cannabis a seizure would incapacitate her for an entire day, now she is up and going within an hour like nothing ever happened. Losing days of your life at a time is no way to live, and neither is living the days you are awake dealing with all those horrible side effects.

The fact of the matter is Austen will probably never be 100% seizure free. Her epilepsy is caused by a gene mutation, and unless the CRISPR gene editing reaches human trials during her lifetime there is really no chance of her getting a shiny new SCN1A gene. It sucks, but facts are facts.

So no, our goal is not seizure freedom, instead our goal is as few seizures as possible, as short of seizures as possible, with as little day to day side effects as possible. Even though she is still having some seizures, Austen’s disease is progressing slower than doctors thought it would based on her history. We attribute that in large part to cannabis.

So yes, we are choosing seizures, even though conventional meds might give us more seizure free days. The seizure free days are never guaranteed, and the side effects are not worth it to us. To us choosing seizures means choosing life, choosing to really live. And as long as that is the case we will continue to do so.

…………………

*All side effects are listed as possibilities for the drug Onfi. We are not against Onfi indefinitely but it is a very highly addictive drug with very serious side effects, we moved here in large part to hold off on adding Onfi and would like to hold off on adding it as long as possible.

 

Sick Day Soup

We just finished our second week in a row of having a house full of sick kids. First it was a nasty respiratory virus, and then a stomach virus made its rounds as well. This past weekend was filled with a lot of snuggles, many loads of laundry, and too many bodily fluids than I would care to recount.

We all know that with a virus there isn’t much we can do to speed along the healing process, rest, snuggles, lots of fluids, and bits of food are generally all we can do to help. When my kids are sick like this I find myself struggling to get something, anything, in them that will bring some nourishment without upsetting their little tummies more.

And so I give you my feel good soup. It’s simple, healthy, and tasty while not packing with too much flavor (to help keep the tummies at ease). But it feels good going down, I find that it’s just what my littles call for on days such as these.

Feel Good Soup

1 Tbsp Extra Virgin Olive Oil
1 lb stew beef, cut into bit size bits
4-5 cloves of garlic, minced
2 quarts beef broth
2 Tbsp Worcestershire Sauce
2 tsp Salt
1/2 cup of rice, uncooked
Parsley to garnish

In a 3qt dutch oven place olive oil, stew beef, and garlic. Brown on medium high heat for 2 minutes. Add water, worcestershire sauce, and salt. Bring to a boil on medium high, then lower to simmering. Cover and allow to simmer for two and a half hours. Add uncooked rice, stir, recover and allow to simmer for 30 minutes or until rice is tender and cooked through. Garnish with dried parsley and enjoy.

 

 

4 Lessons from 7 Days Without Social Media


“I bet you a hundred dollars you can’t go a week without that.” my Uncle Cas said, rather smugly I might say, as we sat in the living room after Thanksgiving dinner.

By that he meant the internet. Never one to back down from a bet, I accepted his challenge.

And I failed, I failed miserably. Cyber Monday, need I say more? But after I had clicked order on my children’s final Christmas presents I decided I would not completely give up. I had gone three days already without social media of any kind (no Twitter, Facebook, Instagram, or even YouTube) and although I would not be celebrating Christmas with another Ben Franklin hanging out in my pocket I figured I could at least see if I could keep part of my commitment.

I’m not going to lie and say it was easy, in fact it was really, really hard. I, like many in my generation, have become dependent on the the constant connection that social media gives me. The constant constant entertainment and feeling of connection without zero effort. But I did it, I pulled through, and I even learned some valuable lessons during the process.

Lessons such as:

I do not have to be constantly plugged in to maintain connections.

My generation are the pioneers of social media. Yahoo chat, MySpace, Facebook, Twitter; we’ve had it all at our fingertips since keeping up with our friends outside of homeroom became necessary. It is so easy to send a quick Facebook message or DM someone on Instagram that it becomes a go-to form of communication.

But during my week without social media I found that these methods of communication were not necessary for me to maintain communications, instead I found that I still connected with the people most important to me, and in even more meaningful ways. A call to my grandmother or best friend left me feeling a lot more fulfilled than a chat message. That’s because during the call, however brief it was, both parties were fully engaged in the conversation, it wasn’t given in little snippets broken up by chores, work, or other daily activities.

Social media costs.

This one was a big one. We hear people often talk about how much time is wasted on social media. We look at our phones so frequently they become another appendage, so much so that I don’t think we can fully fathom just how dependent we are on them until they are taken away. By taking myself away from social media, I took away my need to look at my phone. Believe me, the first few days it felt like I had lost an appendage, like my left leg had suddenly walked away on it’s own and I was left me wobbly and uneven.

And while I felt unsteady without my phone, like I had lost something or was missing something, I soon realized how much I had gained by giving it up. I had gained time with my children, moments that had once been lost while staring at a screen. I had lost the effort and motivation to take care of my home and family, and the relationships I would should have been building with them.

It’s a lot more enjoyable to experience the moments instead of worrying about posting them online.

By day three without social media, I started to feel a little more steady. I started to breath, and to see my surroundings clearer. When I played with my kids I was seeing them through my own eyes, and not through the eyes of my iPhone camera. I experienced moments with them fully engaged instead of planning out how I would put it into a Facebook status.

I started really living these moments with my family, and I enjoyed every minute of it.

I’m not the only one with this problem.

This one seems very obvious, and maybe I am silly for even thinking that it is something worth noting. But I really was taken aback that once I unattached myself from social media for a little while, and coincidentally unattached myself from my phone simultaneously, I noticed how many there were out there like me. Not just moms and dads, and contrary to popular belief definitely not just millennials. No, this problem is one is felt by seemingly all generations, races, and religions. It does not discriminate; and whether that is a good or bad thing I do not know.

After my seven days were done and over I would be a liar to say that I was not happy to have social media back once my little experiment was over. In fact, the first thing I did was check my Facebook feed. But while I have not fully given up on social media altogether, my experiment did give me a sense of the freedom that I can have without it. Although I still use it to connect to my friends and family, my days are no longer wasted away on the screen of my phone. And I really, really like it.

 

 

An Open Letter to the Parents of a Child Recently Diagnosed with a Rare Disease

Dear Parent,

I do not know you, and I can’t even really say that I know how you feel, but I know how I felt last May when we received our daughters diagnosis. I thought why us? Why me? Why her? I wanted to cry and crawl into a tunnel and disappear in my despair. In reality I cried on and off for several days, ignored a lot of phone calls, made a few others, and watched my babies every single move.

Was that the healthiest way to cope? Probably not, but it got me through. And as time went by I learned to pick myself up and as time went on the reality of dealing with the disease eventually became second nature. Do I still hate Dravet? Hell yes. But I have learned some important realities of dealing with a child who has a rare disease, realities that I learned on my own but I want to pass on to you.

Knowledge is power.

Recently it was announced that a new study would take place across 44 hospitals in the US in regards to which of three anti-seizure medications would work best to treat a status seizure. The point of the study to is create a national protocol for emergency room doctors to follow in regards to treating these kinds of seizures. Sounds decent enough, right? The problem was that this is a completely blind study and federal regulations allow it to be done without patient or parent approval, meaning the doctors do not have to tell you they are doing the study on your child before they do it. If that isn’t scary enough one of the three anti-epileptic drugs in the trial (fosphenytoin) is a complete no-go for kids with Dravet Syndrome, instead of stopping a status seizure in a child with Dravet it will actually make it worse. Thankfully they have come out with a list of hospitals that are participating in the study and IF you know about the study beforehand you can get an bracelet for your child to wear letting the doctors and emergency room staff know that you have declined the study.

I am so grateful to know that this option is available for us, but what if I didn’t?

You might be a parent like me, who already googled and searched through the information about my child’s diagnosis before the test results came back. You have an idea what your child will face in the days, weeks, and years to come and you continue to frantically search more information each day.  Or you might be the complete opposite, you chose not to look up the disease before you knew the results, you didn’t want to scare yourself with ‘what ifs’. Both options are totally okay, but remember that you can never know too much about your child’s condition.  In fact, the thing with rare diseases is that you will probably end up knowing more about your child’s condition than many of the professionals that you will come in contact with. You will be the one that is up to date on new trials and therapies that could benefit your child, and you will be the one that is often informed of studies like the one above in which you are the only one who can keep your child’s best interest in mind. At this point being educated about your child’s disease is not an option, it is a must.

Be your child’s advocate. 

Chances are that your child will see quite a few people throughout their medical journey.  Doctors, therapists, specialists, etc. And it is not always easy for them to connect to you and your child because, well lets face it, they see a lot of kids every day. Some, like my daughters neurologist, will focus on kids solely with your child’s condition. But more often than not they might see thirty different kids, with thirty different issues coming in and out of their office each day. They don’t always know all the nitty gritty details, and it’s not that they don’t care, it’s that it is impossible for them to do so.

But those details could make or break your child, and it is up to you to advocate. If your child is put on a new med that your doctor seems very excited about, but you see it having adverse reactions at home it is your job to be your child’s voice and talk to the doctor about a change. If you think your child would benefit from a certain type of therapy, or you a new piece of medical equipment at home speak up! You don’t have to be rude, but you also cannot expect for the doctors to know what is going on unless you let them know.

Use the power of social media to your advantage.

Social media is a great way to get your child’s story out there for others to pray and think encouraging thoughts, we set up the Hope for Austen page back before we ever moved from Texas because we had so many friends and family members wanting to be kept up to date.

But what I love even more about social media is my ability to connect with other moms going through the same thing. Facebook is filled with pages and groups directed towards parents of children fighting similar conditions. If your child’s condition has a name, I would be willing to be that there is a group out there for it. These are awesome because these are the people who know exactly what you are going through, they can help you through the ups and downs of day to day living. From my experience it is these people who will be your biggest supporters, and will pray the hardest for you on your bad days.  Which brings me to my last point…

You matter too.

This is probably the hardest point to remember of my topics today, but I speculate that it is the most important. I read a blog post earlier today that spoke about how for parents of special needs kids often do not just have PTSD, it’s more like TSD because the trauma is continual, it never goes away.

I remember the first time Austen was in the hospital, she was intubated and in the picu at Dallas Children’s.  On day two or three of her stay they were taking her back to get an MRI as well as CT scan to let us know what, if any, damage had occurred from her big 35 minute seizure. So far her dad and I had only left the room to eat or take a quick shower, but never left the hospital itself. In fact, when we did leave the room it was for as short amount of time as we could stand because we did not want to leave her alone. On this day the nurse came in and told us that they would have Austen out of the room for several hours. We could stay in the room she said, but she really encouraged us to leave.  To get out and go to lunch, to take a walk, to breath. We went to Denny’s and then to Target to get Austen a toy. In the Target checkout line I broke down bawling and the poor cashier had no idea what to do with me.  It was then that all the trauma, all the stress came crashing down on me.

You matter too.  You matter too. One more time for the people in the back YOU MATTER TOO. As a parent in general it is very easy to wrap ourselves into our kids lives until we eventually lose who we are without them, this happens sevenfold when our children have special needs. But you must take care of yourself, if for no other reason than if you lose your sanity who else does your child have?

So talk to a therapist, join a support group, take that respite care that the hospital is offering you. Get a pedicure, take a nap, heck even go grocery shopping by yourself. Do whatever it takes to keep you as 100% as possible, because you absolutely cannot make it unless you take care of you too.

 

Dear parent, I know right now you are scared, and I do not know if that will ever go away. I know that the road ahead of you is probably a hard one, and definitely a tiring one. But I also know you are not alone, you have joined a club that no one ever wants to join, but whose members are some of the greatest and most inspiring people in this world. I want you to know you are in my prayers now, and will continue to be in them until I draw my last breath. You are not alone, nor will you ever be.

With Love-

Meagan

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Sick Days

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Atlas is a very energetic little boy.  He is always on the go, building things, taking things apart, and just generally making a mess.  Sometimes I find myself wishing he had an off button, or even a pause button.  It often seems like nothing could ever slow him down.

And then he gets sick. And through all of the coughs, sneezes, and naps I find myself missing my energetic little boy.  At first he always tries to deny the existence of the bug.

“I’m not sick, mama.” he will say through watery eyes while wiping his nose with his sleeve.  His little eyes are already red and puffy, there’s no denying what’s coming.  I know that in just a little while he will give in, and quietly whisper in my ear “Mama, I think I need a nap.”  That’s how I know it’s real, that he has admitted defeat and is really, really sick.  Atlas never wants to nap.

Unfortunately for Atlas this sick day is also falling on the first good snow playing day of the year. I can’t count how many times he has looked longingly out the window today and asked to play for ‘just a little bit’.  And now I can hear Austen coughing from the other room as well: two runny noses, two coughing babies, and lots of snuggles for mama.

I know there isn’t much I can do.  The soup is on the stove, our diffuser is up and running, and they have been thoroughly doused in my favorite essential oil blends from Plant Therapy’s Kid Safe line. We are watching, waiting, and have our seizure stuff out and ready to go.  Hopefully we won’t have to use it though.

In the meantime it will be couch cuddles, Thomas & Friends in the dvd player, and I quiet afternoon with my littlest littles.  Maybe this afternoon we can muster up the energy to play with some homemade play-doh, and hopefully tomorrow we will all be back to our energetic and mess making selves.