Let me introduce myself

It has been quite some time since I have written and shared anything here. I suppose there are a few reasons for that, one could be just a crazy busy life, or maybe I am just really bad at following through when I have no accountability. I wish I could say that it was one reason more than the other, but really it is most certainly a mix of both. 

I love to write and have avoided it for so many years and reasons. One of which is serious self-doubt in my ability to write and then my own thoughts of who really cares to read this. Yet, I am constantly being pulled back in to write and share stories of my crazy life. My closest of friends can tell you that some days our life would make a great comedy/reality tv show. 

Today, I would like to re-introduce myself and my family. I will share a bit of what we all do, especially since this pandemic has changed the dynamics of life quite a bit. 

I am a wife, mother to five kids ranging in ages from 7 to 20. I am a State Chapter Director of the Michigan Pediatric Hydrocephalus Foundation, a nonprofit built to raise funds and awareness of the brain condition hydrocephalus. Our 10 year old daughter was born with this condition and we were thrown into a world we never even knew existed. I am also the CFO with Bliss Family of ROMs, another nonprofit that I am a part of alongside my husband. This one has to do with Android App Developement, so I am very much a behind the scenes helper of all financials and HR.

I love spending time outdoors in spring, summer and fall, walking nature trails, (I say I'm hiking, but its probably not what others picture as hiking), swimming, spending time at the beach, and just enjoying the sunshine. I have a huge fondness of 1980's music (sorry, but it's still great music), as well as almost any genre except country, metal and hard rap. Sorry, there are just some things I can't pull myself to enjoy. I am a survivor of sexual abuse that happened in my teen years by a family member. I am not ever afraid to talk about or share my story, and as I am growing in my life, you may even hear me share about it. My friends and family would say I am quite a hippy spirit as well. I love to cut chemicals out of our household in many ways, but still struggle with making healthier food for my family. I love to bake, but cooking is not so much a favorite of mine. If I have to plan dinner one more stinking night!!! We have a huge weakness to fastfood, ice cream, most anything sweet will catch our attention as well.

My goal with this blog is that you may find it refreshing, I will always be honest with you - sharing both the good and bad of what is happening. I hope that while I share bits and pieces of what I have found to work for me or my family may help you, or maybe a part of my story resonates with you and you want to know more. Either way, I hope you enjoy the crazy endeavors of my life! 

Looking Back

This post has been bouncing around my head for quite some time now. My oldest son is graduating this week. It is such an exciting and stressful time right now. I am excited for him and his new adventures in life, as he will head off to college in the fall. But a part of me is slightly saddened by what he doesn't remember of his years in school.

You see, back in middle school he went on a trip with his fellow scouts tubing in the winter. He fell off the tube and hit his head so hard that the ER doctor thought he was a football player and had been 'pile driven into the turf'!! He then went on to suffer about 5 or 6 more concussions within a year. He went through post concussion syndrome, therapy for concussions in 8th and 9th grades, but sadly just about failed all of his classes in 9th grade due to memory loss and a school not willing to work with him and offer extra support despite all the doctors notes brought in to them. He still suffers memory loss, and so most of his school years are gone to him.

I was working on finding pictures of him for his picture board for the party this week, and he kept asking what is this, when did this happen? There was one from three years ago and he has no recollection of it at all. None. It is as if the event didn't happen.
So his graduation is a big deal to me, and I look forward to celebrating this young man, who despite a lot of odds has indeed graduated without repeating a grade, or late. That is huge.

I was talking to a friend about how kids like mine are expected to graduate high school and a lot of people are not seeing it as a big deal these days. Why, because he comes from a two parent, emotionally stable, home? Let me share with you his early years. Where there was no emotional stability due to a toxic grandparent around a lot (my fault, lesson learned). Homeless living, couch hopping, living in one room of a friends house for a good two to three years off and on. All while he was young and in his formative years. There was no stability at all in his early years, and then at ten he had a sister that has a brain condition that meant I had to spend a year in the hospital with her, barely seeing my other kiddos. Let me tell you, his graduating in 2018, the year that when you start kindergarten and they say welcome class of XXXX, and you hope your kiddo is actually a part of that class is... Yeah it's a big deal.

So, if you were ever a part of this kid's life and want to celebrate this accomplishment and didn't get an official invite, or are not sure if the Facebook invite is good enough. Let me tell you here, no gifts are needed; your presence in his celebration is appreciated and loved and wanted. It takes a village to raise these kids, and I am so glad we had him surrounded by a great one that allowed him to bloom and still graduate with the class of 2018.

Congratulations Jonathan, I can't wait to see what the next four years bring you!!

Kindergarten

6th grade return from camp

summer of 7th grade at Blue Lake Fine Arts Camp

2014 Boy Scout Camp

Senior

Watch Out LSSU - Here comes Jonathan!! 

Hydrocephalus Awareness Month

I spent the morning going back through Willow's blog, Willow's Wishes reading the beginning to her journey with hydrocephalus. There are things that happened that I have long since forgotten. Struggles, emotions, thoughts, feelings, questions, diagnoses all but left in her history. It is so absolutely AMAZING to see what she can do today, ALL that she can do today is attributed to God.

I have thought a lot about this month, September and what does it mean to us. It is amazing how this month has transformed me, for the last 6 years. This year, it once again takes on a deeper meaning, a deeper notion of wanting to share why this month and every day is so important to us in the West household.

Let me take you back, to Willow's two month check up: She wasn't tracking or following my face or toys when we moved them from left to right, she would still cross her eyes, even though the doctor said by this age they shouldn't be. She would not bat at toys, instead, she had a head tilt that while it seemed quirky was just off enough to catch the eyes of a few friends who said we need to look into that. The doctor agreed and ordered an ultrasound to be done just a few weeks later, those results were that she has hydrocephalus. Our pediatrician called us crying, not knowing that this would be Willow's story. A week after this, we would take Willow in for an MRI that would tell us these results: significant loss of white matter, no evidence of pressure from the fluid as the brain didn't develop properly, she was indeed born with this condition, and we should expect fairly global delays. The official diagnosis - Hydrocephalus Ex Vacuo (Hydrocephalus ex-vacuo occurs when stroke or traumatic injury cause damage to the brain. In these cases, brain tissue may actually shrink.) According to the National Institute of Health: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Hydrocephalus-Fact-Sheet) But you see, this type of hydrocephalus generally affects adults, but we didn't know that back then. We were just told, over the phone, that our daughter didn't have a brain, and the fluid was keeping her skull from caving in. 

Fast forward to her four month check up, where there are more delays noticed and the doctor notices that her head circumference had grown six centimeters. Now, according to the type of hydrocephalus she was believed to have, her head size should not grow larger. Yet it did. Our pediatrician knew something wasn't right and after conferring with others in her office called me and said take her to Children's ER, they are waiting for you. So off we went, where she would endure CT scan and vital checks and finally after many hours (about four) a neurosurgeon walking in, saying we are going to prep her for surgery as she is getting a shunt placed tonight. After a crazy whirlwind hour of getting my husband and other three children home and heading to the hospital, we all got to see her and give her a kiss before she was wheeled into OR. After the surgery,  the doctor comes out and would give what would become known as his usual speech, "no known complications', but also informed us of a tiny bleed out that 'shouldn't cause issues' we were able to see her again. This was just the first of what would become many surgeries she would go through. 

September use to be known as the month all the kiddos would go back to school, the month where the weather got a bit cooler, hoodies came out, you would watch a football game on Saturday, and dread summer clean up around the house getting it ready for the winter. Now, September means we spread awareness of a condition that affects our home daily. With each headache we wonder, with each fussy day Willow has, we start to see if there are dots that need to be connected when she is more tired than normal, we question what has she been doing. September is a month, where we share her story, along with so many other's and raise awareness of a condition that could hit anyone at any time in their lives. Do you know about hydrocephalus? 

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