Thoughts

I haven't blogged in forever and know that many of you were left hanging about our construction project.  I will do my best to get an update out here on that amazing transformation but I need to get something off of my heart and I think this is a better place to do it than Facebook.  Once again, keep in mind this is my person blog...my feelings, my beliefs, my struggles, my place to vent.

Our girls are at camp this week.  I dropped McKenzy, Sidney, and Abby off Monday morning and we will pick them up Saturday morning.  They were literally bouncing in line as we were waiting to check them in.  Keyan goes right with the other girls but we pick her up in the evenings and drop her back off in the mornings.  She LOVES going to camp.  This camp is only a mile from our house and is the same one that we go to for family camp over Labor Day weekend.  It has been an absolute God send for us and always bring such joy to our home. 

Tonight at camp, there is a consecration service.  I don't know all of the details, but it is a worship service that invites the kids to accept Jesus as their personal savior.  Due to Keyan's schedule and the schedule at camp, we will pick Keyan up before this service. We also know that "accepting Jesus into your heart" is a very abstract concept and Keyan cognitively struggles with anything that isn't absolute.  Not only does she not understand it, but it is very confusing and frustrating for her.  So, for lots of reasons, one being to protect her mind from fixating on something she can't understand, we will pick her up before that service even happens tonight.

But....that got me thinking.  I was raised with the belief that the only way to get to heaven was to accept Jesus Christ as your personal savior.  I have done a lot of soul searching into the religious beliefs that I was raised in and have done a fairly good job of making my faith a very personal one and one that means so much to me...but is indeed my own, not exactly what I regurgitate in Sunday School class and youth group.  I know I have some of you on bended knee right now praying for my soul, but I promise you that my soul is just fine and my relationship with God is one that no one needs to worry about.  That being said, it is easy to fall into the "fear mentality" that I was brought up in.  So, as I was making plans to go pick up Keyan, I had this terrible fear pass through my body about Keyan and her "salvation."   

Right out of college, when we were first married, I taught at a small private school.  I had a colleague that believed that if a child died before they actually asked Jesus into their hearts, that child would spend eternity in hell. I was shocked.  At that point in my life, I had never come across someone who not only believed that but used scripture to back it up.  I was astounded and spent a lot of time discussing that belief with people whom I respected and wrestled with my complete lack of understanding how someone could not only believe this, but teach it as well.  But, there have been a couple of times where that thought has trampled over my heart like it did tonight.  One time being when Paul and I miscarried our first baby, and the second time when Keyan was very very sick.  Isn't it crazy that one statement by a person whom wasn't even influential at all in my life can in a heartbeat make me catch my breath?  Even after all these years, the risk of the "what if he was right" haunts me. I won't go into the philosophical reasons why I believe he was wrong here, but let me say again, I absolutely DO NOT believe that the loving God I know works like this.

Tonight, I stood in the shower and cried over that thought because this is what I know to be true.  Keyan is a child of God and she is only on loan to us.  The God I believe in, the God that created our special girl, would never turn his back on her because she can not understand a man made concept.  I refuse to carry guilt and fear because God has her in His hands.  Our little girl is an angel that God uses every day to change lives.  The joy she brings is contagious and God does not make mistakes.  I would love to give that guy a piece of my mind and I pray that he hasn't had to experience the fear of loosing your child.  But more importantly, as I look back and deal with that situation it is a reminder to me to be thoughtful before I speak.  You never know what might be powerful to another person.  Please, share your faith, share your beliefs, and share the love of God that you experience, but please do not do it in a judgmental way.  

Construction update...the next week

The beginning of the week brought a lot of excitement!  The official start of this project had started with the ordering of the trusses for the roof.  Once they were ordered, everyone was invested in this project and we knew we were on our way.  It wasn't until the builder had placed the order that we felt comfortable telling the kids.  So, we were all very happy to see them arrive as if felt like the first hurdle of waiting was over.  Well before the sun was up, this crane arrived with our trusses.  I was trying to capture pictures, stay out of the way, and get kids really for school, so it was a whole lot of craziness!

It was very interesting to watch the process of the trusses going on.  There were three guys and it took them less then an hour to get them all up and in place.  These guys knew exactly what to do and barely had to talk to each other, they were so in sync.  

Later that morning, the port-a-potty arrived.  It is not everyday that you get a portable toilet delivered to your home!  Thank goodness for this invention though as we have a lot of construction workers here at the house every day, not to mention that by the end of the week we would be done to 1 bathroom for all 9 of us in this house!

The next delivery was the dumpster for all of the trash.  It was bigger than I expected but I am pretty sure we won't have a problem filling it up by the time this project is complete.

By the end of the day, Keyan's room had trusses and plywood on the top and the plywood walls started going on.  Amazing!

Friday morning the builder had to open up the hole in the wall between Keyan's room and the kitchen for a few minutes and she was so excited to see it from the inside.  It has been hard for all of the kids to envision how the room will flow with he rest of the house so this made it a lot easier to understand.    She had a difficult week health wise so it was so great to see her smile and be happy!

Friday morning also brought the bathroom demolition!!!  Giving Keyan her own space has so much value for all of us but making this bathroom more user friendly for 7 people ranks right up there too!  In case you have never been to our home, here are some before pictures.  This one is taken from the main door of the bathroom looking in.  It was a simple lay out with the linen closet, toilet (which you can't see in the pic), and vanity all on one wall and the tub/shower at the end of the room.  

This picture is from the door way into the master bedroom, looking through to the hallway.

Just another view from the hallway...you can see where the toilet is in this one.  Not only was the bathroom extremely outdated and gross, but there was not nearly enough storage no matter what I did!  It was not uncommon to have Keyan in the bathub, a nurse kneeling in front of the tub helping her, several people brushing their teeth, and someone using the toilet all at the same time!  No such thing as modesty in a large family with not enough bathrooms!!!

The bathtub had been painted at least two different times by previous owners and those layers were all peeling off.  It had gotten to the point where no matter what we used to clean it, it never looked clean anymore.  I was thrilled to watch the plumber start removing it!

It didn't take long for two guys to completely gut the entire bathroom!

By Friday afternoon...this is how the bathroom space looked! We were all so excited to be to this point!  It is hard to tell, but not only was the room completely gutted, but the plumbing rough-in had begun!

Here we go!

I will start with some before shots...Here is our home from the back.  The bay window is where Keyan's room is going.  

 You can see that this was after the first day where they dug the holes for the supports.

My Dad and Paul had to cut the grapes back and get the side yard ready to be the staging area for the construction.  

Day 2 brought some demolition to the inside of the house.  The girls decided they needed one more picture taken in the bay window that morning.

Paul and a friend of ours built this storage for the bay window so I think it was a little bitter sweet for him.

By mid-afternoon, our dining area looked like this!  I have to admit that it was quite a shock to loose the windows for now.  It changes the lighting and feel of the kitchen so much but I know that it is only temporary. indwell be so much more than I can even imagine when it is finished.  

 Here they are in the process of prepping the house for the addition.  

 By the end of the third day, we could walk on the "floor" of the new space!  It has been absolutely incredible to watch the process take place.

 The highlight of the afternoon is coming home from school and going to see how everything has changed.

 We helped Keyan and her sisters up into the space so that they could explore a little bit.  

 Four days into our project and this is how far we have come!  Amazing to me!  We have an incredible General Contractor who is passionate about this project and keeping it moving in the right direction.  God has blessed us with the crew that we are working with.

Exciting news

It is with much excitement that I share the latest happenings at the Hogan household.  Watch the video to see me breaking the news to the kids.  The entire video is over 7 minutes and there is just a lot of dialogue after the first two minutes or so but the beginning is priceless!

Thanks to a local non profit group, we have begun construction on an addition to our home!  Plans have been in the works for months and this new space will be Keyan's.  She has always slept in the living room.  We need to be able to observe her in order to keep her safe, so our living room has always been her "bedroom."  It is full of medical supplies, her bed, monitors, and her equipment.  We can run a pediatric ICU room when we need to and there have been many times that we were able to keep her home instead of taking her to the hospital.  With the knowledge that this isn't going to change, we are thrilled that she will have her own space.  She and her nurses (and all of her stuff) will be located all in one place instead of having supplies spread out throughout the house and garage.  

Keyan has never once complained about being in the living room so we were blown with her reaction to the news.  She was so happy she was crying!  Paul and I were too by the end of it.  We also get to remodel our bathroom and do some sprucing up to the other kids bedrooms so this is one major project! We are so grateful for God's blessings in our lives and the way that He is bringing all of the pieces together for this to happen.  

Just last Monday they broke ground to dig for the supports structure.  Every day has brought new changes, decisions, and even more excitement.  The kids have all loved watching the transformation.  

We already have lots and lots of pictures so be sure to check back for updates!

Community

Keyan and I went to a gathering tonight for the blind and visually impaired kids in our Intermediate School District.  We went to learn about apps for the iPad that might be helpful.  The information was very helpful but the sense of community was the best part.  Keyan thoroughly enjoys being with this group of kids.  They only get together 1-2 times a year and it is kids of all ages but Keyan was so excited to go. She knew that it was only for kids with low or no vision and was proud to be a part of that "club."

It was striking to me how comfortable Keyan is with this community.  The facilitators of the group are visually impaired specialist that work with these kids all of the time so they do a remarkable job interacting with the kids.  They make sure the kids get a run down of the facilities, using non visual cues that the kids all understand.  They always introduce themselves when they are talking to the kids one-on-one, and they make proper accommodations for them that the rest of us "seeing" people don't even think about.

When you look at Keyan, you do not immediately realize that she is visually impaired but she actually has quite a hard time navigating unfamiliar territory and has VERY poor vision.  She has worked with a vision specialist since she was three.  She is working on the beginning stages of braille, she uses several apps on her iPad that read aloud to her or enlarge print, and just this year, is learning how to use a white can that you see blind people using.  She works very hard to learn how to be independent in a seeing world.  I think that is why she enjoys meeting with these kids so much.  She is on an even playing field.  The activities they do are designed for kids like her, the games they play are possible to play even if you have no vision, and the places they go focus on taking the world in through other means than their eyes.  It is so cool to see.  In school, Keyan is learning how to navigate her world using a cane and she went tonight and meets people who use a cane all of the time.  How cool is that?  I think we all know that feeling of being with people who just accept you for who you are.  I have a few friends that when I am with them, I know it is completely safe to be my real, see through self.  I don't have to pretend that everything is alright, I don't have to hide my neurosis (not that I do a great job at that any time), I can laugh, I can cry, and I don't have to be ashamed of the things that make me different.  This is what I saw in Keyan tonight.  She was totally at ease, happy, talkative, and "at home" with these kids and special adults.

As I drove home, the full emotions of the night hit me and the tears fell.  They were happy tears, mixed with tears of sadness.  Tears for the fact that after seeing her with her community of visually impaired kids, I have to face the fact that she isn't 100% comfortable in her every day life.  I want her to feel safe, a sense of belonging, comfortable, and to not have to worry about trying to keep up with her peers. After tonight, I know that although she never voices it, she struggles to feel that all important sense of community in her day to day life.  I know that I can't offer much to change this.  I know that I need to learn how to make her more comfortable...I need to pay attention to her silent cues.  Mostly though, I was just so grateful for tonight.  Thankful for the people that specialize in kids like Keyan, thankful that they are willing to teach me how to help my girl.  Thankful that they understand the need for these kids to socialize with others who struggle to see.  Thankful that for a brief few hours, they were able to make Keyan feel "normal."  

The whole sense of community has been on my heart lately as we venture into some fundraising for Keyan and her quality of life.  Two weeks ago, we started a "go fund me" page and the outpouring of support has been incredible.  People are sharing our story via social media, people are donating, her friend at school is collecting returnable cans and donating all of that money, people are planning fundraising events, and friends have put together a flier that we keep seeing out in the community just to name a few special things going on.   It is amazing.  Our community, both local, and all over the world, has stepped up to make a difference in Keyan's days.  Raising a special needs kiddo is often very isolating and lonely but I have been reminded over these past two weeks, that we are anything but alone! In case you haven't seen her page, it can be viewed at www.gofundme.com/keyanhogan

Eyes

We took Keyan for her checkup in Cincinnati last week and I have spent several days attempting to process my feelings about the trip.  It is always hard to put my thoughts into words after we leave this  place that plays such a huge roll in our lives. It all hit me as we were making our way through the busy main hallway of the hospital to leave.  My thoughts instantly consumed me, stopping me in my tracks and tears formed.  I realized at that moment the defining thing about the appointments were people's eyes.  As I let the tears fall, grabbing tissues from the germ display on the wall, it hit me that the doctors and nurses eyes were different this time.  

William Henry is quoted as saying, "The eyes shout what the lips fear to say."  I realize now that that is exactly what happened in that examine room and why I felt like I had been kicked in the stomach during that appointment.  Every question they asked, they just nodded their heads to our answers.  Almost two years into an official diagnosis, and almost ten years into Keyan living with this disease, the doctors can only nod, agree, and say, "that is what we would expect."  Every single thing they asked, they already knew the answer.  Every single thing they suggested, we have already implemented.  The look in their eyes was one of sympathy, one that spoke much louder than any words they used.  That my friends, is hard to see.  I am very used to sympathetic looks and comments and they don't even bother me.  I understand completely why the general public, and even our family and friends look at us with that, "I am so sorry" look.  But when the top GI doctors looked at me in that way, it hit me to my core.  

Many of you have asked us over the last 6 months how Keyan is and many more of you have heard me say that she is good, but that it is taking so much more to keep her at that point.  Managing her care every day blows my away.  It is a constant cycle of trial and error, treating symptoms, dealing with the loudest problem while the others hang heavily in the background, and guessing at what the best thing is.  It is a life with many more questions than answers but the beautiful thing is that Keyan has no idea the level of complexity.  For that, I am immensely grateful.  While I struggle to make sense of it all, she continues to live this life with incredible amounts of joy.  She continues to smile, laugh, dance in her undies, and embrace every day as if it were a gift. My conclusion therefore is that while the worries make me weary, my job as Keyan's mom is to follow her lead emotionally and continue the fight....continue the craziness....continue the juggling act...all with a heart full of gratitude.  Thankful for another day to fight for her, thankful that we are able to keep her managed so well, and thankful for the way she touches my heart every single day.  The bottom line???? We just keep keeping' on!  The doctors may not have a lot of answers or suggestions, but we will just keep doing what we are doing because today she is full of life!

My school prayer

Dear God,

Bless these special kiddos today.  Seventh grade and fourth seems so grown up.  Thank you for a wonderful summer filled with camps, sports, friends, family, and relaxation.  Keep them safe both physically and emotionally.  May they be friends to those around them and may they be surrounded by friends that build them up.  Help them feel secure in who You created them to be and let them feel your arms around them this school year as they continue on the path you have them each on.  I pray that their days are filled with laughter, learning, and a listening heart.  Bless all who may come across their smiling faces.  Thank you God for giving me these five children, and as my tears fall this morning with worry and fear, may you use their time in school to renew my spirit.  May their time at home with us be a safe place to fall and let them be feel our love for each of them.  Amen.

And....we are off and running!!!!!