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 

Who decides

I have been struggling with something for a while now, sometimes I think of it more than others. Most times though, it is a complete fabrication in my own head and there really is nothing to struggle with. 

You see, there is this community that we belong to, for quite some time now, but officially let it sink in when Willow was diagnosed with hydrocephalus. That community is the special needs community. We have a few kids that have different needs in our home; but all of our kiddos at this time (because with Willow you never know when or if it could change), are high functioning within their own needs. I have one kid with Asperger's and Sensory issues, one diagnosed with a medical condition that comes with all kinds of different needs at different times, that being Willow and hydrocephalus. I also have another one with Sensory Processing Disorder, differently affected from the one mentioned above. The reason I struggle though is not really the typical day to day struggles with all these kiddo's; though that is there too. The bigger struggle I have is accepting my place, or role within that community. Most days, I don't think about our family as being a special needs family; mostly because our children are higher functioning and you wouldn't know it. I feel that I don't want to take a spot in the support group, or lecture for fear that someone may need that spot more than me because their kids have more needs then any of mine do. Or there is the thought that I can't possibly relate because of the fact that my kids are doing well, and of course the deeper fear of being judged.

Then there are the days where the light shines through. Days where I feel like I need to be joining those communities, because without sharing the stories of greatness, no one would have hope. When it comes to hydrocephalus, my goal is to raise awareness, it seems to be that there is more knowledge about the negatives that go along with this diagnosis than the positives. So much so, that even the medical community will tell women to abort the babies at the initial 19/20 week ultrasound, when diagnosis is most likely found. Now, when kids with hydrocephalus can have a chance to live active lives like Willow, why wouldn't I want to join the communities that we can easily get into with her diagnosis and share that information. Someone may need to hear it.  As for the other kids, despite the high functioning, we too have challenges and they can wear on one person if there is no community to share it with. So, I am finding it a hard pill to swallow, but I going to look for the shining light, hold my head high and talk about all of my kids and their needs; because sometimes smaller needs can turn into big stressors. 

Thank you

So I took the girls to the Fulton Street Artisans Market on Sunday afternoon (see them here), it was our second time there and because of the crazy morning weather not so busy this day. It was fantastic, the girls really love to look at all the great hand made things, have a snack, talk with the vendors (who are usually surprised at how much my girls know about the nerdy stuff such as Dr. Who, Pokemon, etc). Anyway, this particular Sunday I asked a vendor if she could create something she already had showing but in a different color.  She had made an awareness ribbon in pink and I asked for it to be made in blue.  She said no problem, give me five minutes.  Well, we went walking around while she did that, and when I returned she asked me what it was for and I explained the PHF to her and Willow's journey with it (Willow's Wishes).  She then told me that what she does is make donations to the organizations when a ribbon is sold. I was shocked!  All I wanted was a blue ribbon to put with my keys and share awareness. Well share awareness I did that day, but how great is it that a local artisan, who could keep the money to herself to support what she does, instead gives back?!  Three days later this story, this moment still holds in my heart.  So here is a great shout out to an incredible artisan (whom I am sure will be seeing us again soon as now the boys want stuff too!)

Sarah Hale thank you for being you   (check out her Facebook page here)

Here is what I bought from her:

Also, another state chapter director had done a tshirt sale to raise money and awareness, well here I am sporting mine:

Someone I love lives with hydrocephalus 

I love you Willow Anne :)