DC Recap

So, I will do two recaps on our trip. This is a more grown up version with a bit more incite as it is my personal blog. On Willow's Wishes, I will do a 'Willow version' of how the trip went. Maybe even do a Q&A interview.

I will spare you the boring details of the drive (13 hours down, 14 back home), as well as any and all fights between children that I am sure, could have been prevented if only they were to follow directions. I will say travel bags with new books (coloring, puzzle, reading) are a great thing to have, while magnetic hangman not so much (not sure we found all the pieces after the 3-year-old got to the game).

Thursday was the meet and greet dinner. A night for all of the families to meet other families traveling the same journey of hydrocephalus, (who are we kidding, no one's journey is the same - it's the conditions name that is shared, but there is also a great understanding that goes along with that), and share stories. It gives our kiddos a chance to meet others who have laid in the hospital bed long hours as they have thought no one gets it - but they do. Willow and Evan also got to sign books that night which she thought was not so great (she signed about 30 copies that night!) and so had a sore wrist. LOL

Friday was the meeting day, we met with three offices in DC, Rep. Amash from West Michigan, Sen. Stabenow, and Sen. Peters.  For the first time in all my years of going to these meetings, I actually felt that Amash's office received us and Willow's story well. They made it clear he will not sign on to the Caucus to help raise awareness in Congress - but they now have a health aide on his staff, which is new. I like to call that a very small baby step, but at least a step in the right direction. The other two offices have always been quite supportive which is great, but this year almost felt above what has been said in the past. They both loved that there are events happening in MI to help raise awareness and have said that they will love to hear more about them in hopes to come to our walks or help raise awareness in September when it is National Hydrocephalus Month. Those are great things to hear at this point. So, now we will wait and see what happens as more events and awareness is raised.

Saturday our family took a trip to Salisbury, MD and then on to Ocean City. Our stop in Salisbury was not very long at all, it was a moment to pay respects and get a photo with Jon's dad who passed away before I met him. So, none of our kids had the chance to know that grandpa; but I felt it was a great piece of family history for them to know. Maybe because Jonathan runs off to college next year, maybe because we picked Orion's middle name after grandpa's middle name... Maybe because we were close enough to see it, and that was all the reason needed. Either way, Willow was very excited to stop and 'see' grandpa. We then drove on to Ocean City so the kids could go jump some ocean waves and taste the salty ocean (more to come on that in Willow's version). Then homeward bound on Sunday, all in all, a great trip.

Yet, so much more came out of this trip. I go on these trips and bring our family to raise awareness in Congress. I need them to see how hydrocephalus has affected our children - not just Willow. Something that I was reminded of on this trip, is that I have no memory of Jonathan's 6th-grade year at Blandford, that was the year Willow received 12 surgeries in a short 12 months. The memories I have of that year, are of Jonathan asking not to go on overnight trips away from home because what if Willow ends up in the hospital? What if Willow doesn't make it out? What if....

Or how about the comments made to me about how amazing I am as a mom because I am there?! I am there speaking out for my daughter, I allowed her to have a voice in a book, and share her story with others. I am THERE every day she is in the hospital.... I get it; some parents can't be there in the hospital, bedside for every minute. I do not judge... but to have a few teenage girls thanking me for being there, just being THERE... hits you in the heart.

What about the time the research doctor who is there, set to speak the next day at our conference also thanks you for allowing your child to write a book so that they can hear from a different perspective and remind them of WHY they are in the lab day in and day out? It puts a heart to the reason they do their job, and she had tears in her eyes.

You see, this year there was a lot of awareness raised, I am certain of that. It may not have been the awareness I left my house for, but it was awareness none the less. It put a new fire in me, reminding me why I joined the PHF, why I decided to get involved and be the voice for those that don't want to or can't speak. Why I will, every day, take it personally when something I plan as a way to raise awareness or funds doesn't go well, and it will make me try harder next time and not give up.

There have been a lot of chance meetings in the last month, that lead me to believe that this is where I am supposed to be, this is where I am supposed to grow. I personally have tried to steer my life in many other directions (still do on a daily basis), but I keep being shown (though I don't always listen, darn stubborn, red head) and after this trip to DC... I hear now loud and clear.

I want to thank EVERYONE who helped our family all summer long raise funds to get to DC this year, this by far was the most rewarding trip we have been on. Thank you, just doesn't even seem like enough, but yet is all I have.

 

Hydro Hero's 2017 

VP Michael Illions with Willow 

Amazing news

Our summer has been filled with lazy days, fun days, quiet days, and days where the kids can't keep from shouting at one another, (truly a nice way to say screaming, and ripping each others heads off) and well, a book release!

This next half of our summer is truly going to fly by with so many things taking place that I am not sure I will be able to keep up! I know we have many supporters out there who also love us and want to stay posted on our going on's and upcoming events. I will do my best to keep one and all up to date, but please know - we are crazy busy!! These next few weeks have arrived and we are all very excited!!

This week we have 2 candy making classes that Willow and I are teaching. We love to make chocolate candies, and are always complemented on them, so we want to share our love with others. doTerra is also offering BOGO offers this week, so I will be busy with work stuff for sure! We love BOGO week! Sharing yet another passion of ours :)

Next week, we are running our yard sale for 3 more days, the 27-29th of July. We have had NEW items dropped off, and things still being dropped off. Toys, two different bunk beds, dresser, chairs, clothing, housewares, tents, and so much more! Come check it out next week!

On the 31st of July, why not check out Fox Morning Mix around the 9 o'clock hour.... Willow will be on live talking about her book, the PHF, our walk and who knows what else! We are super excited for Willow, while she is super nervous. :)
Also this same week, is the MI PHF WALK event on Saturday, August 5th at Wahlfield Park. Willow and Evan will be there signing copies of their book before the walk starts. There are great family fun games, as well as a beach party theme (so plan to get wet!)

On Saturday, August 12th, I will be taking Jonathan up to Lake Superior State University to tour the college. It is really the only place he is interested in, so I hope it lives up to his dreams. He is looking at a forensics chemistry major there, and it seems they have a great program.

A few days after that, we leave for DC! We will travel as a family there to meet with the PHF and speak with Congressional reps about the importance of raising awareness of Hydrocephalus and how it affects so many, and yet so unknown. We also take a day or two extra as a family vacation, so the kids are looking forward to that as well.

Shortly after our return from that, the kids go back to school! It is crazy to think that they will be going back in only 6 weeks. Willow is most definitely not ready. The other kids have mixed reviews. :)  This year, we have a senior in high school, a freshman, a 7th grader, a 1st grader, and a 4 year old in preschool!! Oh how busy we are. :)

I hope that for many of you who follow our family, support our journeys, and love to stay on top of things - this was all helpful information. For others, maybe not so much. Lol, if anyone has questions about what I have said here, please message me, I will do my best to answer quickly.

From our family to yours, please enjoy your summer!! We are half way through!

Willow's story

Today, I am going to cross the lines in my blog a bit and share with you all, my six-year-old daughter's story. You may have heard it, or follow the blog I keep for her (Willow's Wishes), but today I am going to share on my personal blog.

Willow is our fourth child, and my pregnancy with her was not an easy one, but I am not so certain that all of the complications I had led us to where we are today. We will actually never know, but it isn't the part of the story I really want to focus on. You see, Willow was born Christmas Eve in 2010, and while I wasn't happy about having a baby so close to Christmas, you have to know her, to know that she is full of spirit! That was totally the right day for her to be born. She passed all newborn screenings, and was only 10 days early and had no need for any interventions. We stayed until the 26th and then were sent home.

As she grew, we started to notice a quirk she had. She had this head tilt that seemed awfully awkward and hard to imagine as it being typical newborn.


So at 2 1/2 months of age, we started a journey that we had never even heard of, knew nothing about, and sure as heck, was not prepared for.

Willow's story is quite long and involved, but I would like to keep it short and concise as I can. Please know you can go back to the link above and follow her journey more in depth at her blog (just start here). Willow was diagnosed with hydrocephalus at 2 1/2 months of age. Actually, to be more accurate, we were told she had no brain. In that little, tilted head above, is all fluid and no brain matter. At least that was what the first MRI showed. At four months of age, things changed and she had her first brain surgery. That is the only way to fix hydrocephalus. There is no cure, only brain surgeries to fix this condition. From the age of four months to the age of 16 months, Willow and I lived in the local children's hospital. During this time, she would average a surgery a month. 12 brain surgeries by the time she was 16 months old. Instead of walking, saying mama, dada, she was dealing with brain surgeries and a shunt that was supposed to be helping her, only instead it kept failing her.


We then had a great break and almost made it four years surgery free! This time allowed our family to grow into a new normal, allow us to be with our older three children again, and really live life. But shunts are unreliable, it is only a machine after all. Machines fail outside of the body all the time, why would this be any different?!  Hopefully, you can catch my frustration here. Shunts have a 50% failure rate within the first two years of placement, hence so many surgeries on our little girl. Not only that, she is actually allergic to the silicone that the shunt is made of, and so needs a special one to be placed in order for her body to not reject it. How special for our little girl.

Willow is now six years old, and not to jump too far ahead in our story, but she is up to brain surgery number 17. This doesn't count how many times she was placed under for tubes to be placed in her ears, tear ducts probed open, MRI's as a baby, future dental work (well, it's done now), etc. A few years ago, she started to wake up during a routine MRI, and they had to use emergency anesthesia. What happened was her body had become used to the dosage used at her weight, and she woke up. :( Those are some of the things that worry us, as well as how many more surgeries she will have.

Now, Willow is doing amazingly well, and we are so very proud of her. She has overcome so many odds, and her story may not be typical of what a child with hydrocephalus looks like, but it is her story. 17 brain surgeries and counting, just finished kindergarten and looking forward to an amazing summer.

Now, this really does give only a snapshot of all that she has overcome, it doesn't discuss the therapy she received all those years to get her where she is, it doesn't talk about a lot of the issues faced within the surgeries, etc. But again, if you want to know more about her personal journey, check out her blog. Just know that all of this led to our journey, where we are working with the PHF and I am a director here in Michigan. 

The PHF is a non-profit organization and you can learn more about that here. We host a walk in August to raise funds for the MI PHF that are then given to fund research grants for better treatment and better shunts. Information on our walk can be found by following this link, where you can also make a donation or register to join us. This year we are also going to DC to speak to congressional reps to raise awareness of the condition there as well. The more that is known, the better the chances are to find a cure. 

Spring Break

I want to start off saying that for me personally, this was the BEST spring break ever!
We did not go anywhere out of state, or to some incredible water park. Nope, we stayed in the GR area the whole week. So what, you may ask, made it so great?
My attitude. :)

I have struggled with depression, seasonal, post-partum, whatever, for years. I had a lot of anxiety, stress, unhappiness, built up inside of me. But I have been working on myself for months, and this week I feel I conquered those things that were holding me back.

As much as I love my tiny (not so tiny) brood of children we have created, they were a source of my most intense stress and anxiety. I could not be with them for 24 hours, multiple days in a row without flipping out. And I mean FLIPPING OUT. I would use words not meant for children's ears, or I would not go anywhere for fear of how they would behave or worse yet, how I would react to their behavior. This week, was a complete difference and I LOVED IT!

We started by going to the movies to see Sing. Now, there were a lot of factors that led up to even getting us to the movie theater that day. Jonathan had driving practice, I forgot we had a meeting at 5 pm, had to run home to get driver's ed books, so that meant late to movie. They didn't have 6 seats next to each other, normally I would say nope, change of plans. Instead I rolled with it, and made it work for us! And it was GREAT! Made it to meeting, quick fast food stop after (traffic could have made us late, we found alternate route), made it in time to Jonathan's driver's ed class.
That was just Monday!

Tuesday, we cleaned house, went to the library with the littles, made brownies (with some essential oil flavor boost) and just enjoyed our calm day. Wednesday we chilled out in the morning, relaxed and stayed in jammies for a bit. Then went to the mall!! Yup, I took 5 kiddos to the mall, for no reason at all! Well, other than the oldest was meeting some friends, and since weather wasn't the greatest, we stuck around. Not everyone wanted to, but we made the best of it. Now, there were things that happened here that would have in the past would have sent me over the edge and running for the hills (after many more curse words left my mouth). I will spare you the play by play here with this. Instead, I rolled with them! I made jokes with the kids about them! We enjoyed our day, none the less. :)  It was amazing.

Thursday was spent with appointments for Willow. She had an MRI and a follow up from surgery with the neurosurgeon. I had all five kiddos with me because Jonathan had driving practice again right before. So, we ate lunch out and made it to the appointment in time. Then thankfully, we were able to be seen right after the MRI at neurosurgery, which got us home a little bit earlier. We were treated by a visit from a dear friend whom we hadn't been able to chat with in a while, and then dinner and driver's ed again. We ended this night with a trip to our favorite ice cream store - Frosty Boy!! (This may or may not have been our second time there since break started).

Then Friday, the official last day of break, because well you always get a weekend off, so the kids don't count it. LOL    We spent Friday..... ROLLERSKATING!  I even put skates on and had a blast! I want to go more often with the kiddos. :)  The best part, was that one; I did not fall down once while I had skates on! Yeah me!! The second thing, I freaked my kids out! Evan saw me doing circles on skates, and said it was 'witchcraft!' because he could not figure out how I was doing this. People, please, I am a child of the '80's we spent our days on wheels!! LOL  Well, I did anyway. :)
I had as much fun as the kids did there.

So, every day this week I did something that in the past would have pushed my anxiety through the roof, my stress levels, my fondness for my kids would have been right out the window. So, how did I get through the week? A lot of prayers, self development in the past year, and essential oils. I made sure every day, I started the day giving my worries to God, giving my need to be in control over to Him, and asking Him to guide my day. I made sure that while I was drinking my coffee, I put on my favorite oils (patchouli and spearmint), and then Clary Calm on my ankles. :)  I also did something that I don't ever do. I have this little card on my desk, and it says, "Put down your shield and stand in the rain of blessings". I did THAT this week. I am forever greatful for this week with my kids. They may not see it as the best spring break ever because we didn't officially DO anything (go on vacation); but for me, it was a HUGE win. I am forever thankful for.

Construction Worker Orion

Airline Pilot ready for take off! 

Carosel Ride at the mall (me, Orion, and Willow in back!)

New hat purchase at mall

New hat as well :) 

MRI imaging to check ventricles after shunt surgery. 

Rollerskating! 

I can't believe how well he did! This boy is a natural! 

Yup, I took all 5 of them with me :)  We had a blast.

2017 BEST SPRING BREAK EVER