Halloween

Despite wet weather, our Halloween was a great night.  We decided to host a party again this year since the weather is so unpredictable and the kids have all been feeling a little under the weather.  We keep it “simple” by inviting our friends the Heerma’s (affectionately known as Keyan’s friend Max and his family), my brother, sister-in-law, nieces, Jamahl had a friend, and than the 9 of us!  Simple is obviously relative!  It is a fun group and works out just great.  Before we get to the party though, I must fill you in on the adventure of the girls costumes.

This year, the girls really struggled to decide what to dress up as.  Some of them wanted to do a group costume, but they could never come up with an idea that they all agreed on.  At the same time, I didn’t really want to just walk into the costume store and have them just pick.  So, one Friday night, the girls and I left the boys home and we headed to one of our local consignment stores.  This particular one is HUGE!  We girls had so much fun!  For three hours they ran around the store grabbing items that they could use to dress up in.  They tried outfits on, changed their minds, started the whole process over, and all finally decided.  The interesting thing about the whole night was that my girls don’t typically get to shop like this.  They still like to dress like each other so that limits where we shop and what we buy.  Plus, just due to the nature of our life, I usually do most of their shopping online.  If I go to a store with the girls, they inevitably want the really cute, fashionable things that are just too expensive for our budget.  If I buy it myself, they always like what I buy partly because they do not know what they are missing.  Shopping for “costumes” was so much fun for them because they could pick most anything in the store and I could say “yes.”  Besides, what girl can resist an entire room full of shoes!  We had a great time putting their outfits together and even better yet, they went to school today in last nights “costumes”, repurposed as regular clothes!  How fun! So, without further ado, her is what they came up with!

     

Sidney picked this fancy dress out right away and decided that she would be a winter bridesmaid.  She loves dresses and fancy shoes and we just don’t have many of either one so this was perfect for her.  She was beautiful!

  

Keyan too fell in love with this shirt and so the other girls helped her decide to be a Hawaiian surfer girl.  She loved clopping around in the light up flip flops that she found and her dark hair made this costume the perfect choice for her.

  

McKenzy was drawn to the funky clothing and had the most fun choosing all the different layers and accessories of her DJ costume.  She was slightly distraught because the hat covered her new bangs up that she got cut earlier this week, but in the end, all was well….what a little personality on this one!

 

Abagayle had the hardest time choosing a costume because she just couldn’t make up her mind.  She ended up settling on this darling cheetah.  You have heard me say it before, but she is our very fashion conscious girl.  She loves putting outfits together and loves very random things. So, of course it would be her that needed the face paint and the fancy eye tattoos! She looked so cute and was very happy with her final choice.

 

No surprise to anyone…Jamahl was Tom Brady with the New England Patriots this year.  Did you know that when Tom Brady was young he dressed up as the quarterback for the New England Patriots???  Who knows what Jamahl’s future will hold but we think he makes an incredibly handsome football player.  The other picture is of him doing some last minute homework before the party. He is such a responsible kid!

The women at our party know how to have fun!  Firefighter Emily, I was a cowgirl, my hippie mom, and my hillbilly sister.  What a great group!  I should have gotten a picture of the men since NONE of them dressed up!!!  Emily says they were all nudists on strike, I say they are party poopers!

Most of our group….what a party we had!

 

Our nieces…Lucy and Aubrey.  I love these two “littles”…they add so much to our family!

We had tacos for dinner with cupcakes and monster ice cream sandwiches for dessert.  We made glow in the dark monster nights, played glow in the dark ring toss, ghost bucket bonanza, had a mummy relay, and trick-or-treated through the house.  The kids all had a ton of fun and ended the night with a ton of candy! Nothing better that that!  The best part?  My kiddos were so worn out from the excitement, that they were all in bed by 9pm!  Not too shabby!

 

  

Poor Dad was completely freaked out by my hillbilly sister-in-law.   Truth be told, none of us could look at her without cracking up.  She was in full character and we had such a blast with it!

October has flown by….and now onto BIRTHDAYS!!!! 

Back to school

It is so hard to believe that the school year has begun yet again.  Our last few weeks of summer have been full of walking through the middle school schedule, open houses, gathering supplies, finding shoes to wear that are not flip flops, and filling out forms… all in preparation for today.  It has been busy, but has helped us all begin the process of getting back to school. 

Jamahl entered 6th grade today which in our district is middle school.  Do you remember starting middle school?  I sure do!  I remember being a nervous wreck worrying about everything (surprising, I know).  Lockers, changing classes, different teachers, new kids…you know what I mean.  Jamahl on the other hand was nothing but excited about today.  He has been ready for this challenge for awhile so it has been so much fun watching his anticipation as it drew closer and closer.  When I picked him up this afternoon, he jumped in the car and with a smile on his face, said, “I have so many things to tell you!”  He proceeded to share so many positive things about his day.  It made me happy to see him happy! From meeting new people, to a teacher who loves the New England Patriots, his day was great.  As a parent…who could ask for more?  I was never more grateful to be able to pick him up and catch that initial excitement.  It was awesome!

 

The girls started third grade today and they too had a great day.  I have been in contact with the teacher since last year so I didn’t have near the concerns that I have had in the past.  Keyan’s one-on-one nurse has been with her since first grade so that takes a lot of the worry out of the picture as well.  We are so thankful for a nurse who not only takes great care of Keyan but also looks out for all four of the girls.  We are really lucky to have her.  I stayed in the classroom for the first hour or so and fought back tears as the teacher talked to them not wanting them to worry about anything!  She seems to be so caring and the girls have already commented that she is always smiling.  I checked in with the girls a couple more times throughout the day while I was volunteering in the lunch room and every time I looked in they were smiling and engaged.  Once again, that made me smile!

Third grade VIEW SLIDE SHOW DOWNLOAD ALL

I know it sounds like such a cliche , but it never ceases to amaze me how time speeds by.  The conversations that we can have now with our kids and the ability to share so much of their life is such a joy.   It is not an unknown fact that I really do not like sending my kids to school.  I miss them, I do not like the busy schedule, I have a hard time with other people not treating them right, and I do not like the demands that school takes from our family life.  For today however, I am grateful to live in a country where school is provided, where my girls can go to school right along side the boys, where I am welcome to come and help out, where they are challenged to be better people, and for a few minutes in the day to go grocery shopping without five kids!!!  Here is to a great school year filled with new adventures.

2nd grade talent show

Today was the annual 2nd grade talent show at school.  The girls were super excited about showing off their talents.  It has been quite the project for them.  They have been busy choreographing, figuring out wardrobes (whose closet is better for matching outfits???), downloading music, and practicing.  They were up early with excitement and anticipation of the big day.

 

McKenzy and her friends choreographed their own dance!

Sidney showed off her cart-wheeling talent!

Keyan playing “Twinkle Twinkle Little Star”

 

Abby and her friend sang along with Taylor Swift!

 

I also took some still shots to commemorate the big event! You can click on the link to see them at your own speed!

Tons of Talent! VIEW SLIDE SHOW DOWNLOAD ALL

Ok, some of you may want to stop reading here.  I am going to step on my soap box for a minute so….you have been warned!

One of the down sides to being such an open book type of person is that you also open yourself up for people to share their personal opinions with you.  Most of the time, I can appreciate what people have to say and move on and I NEVER tire of answering questions about the girls or Keyan,  but there are a few instances when I just get fed up with people thinking they know more about my children than I do.  From the moment we found out we would be having quadruplet daughters, people have asked us about school.  For whatever reason, this is a very opinionated topic and we are well versed in talking about the fact that we keep the girls together in the same classroom and sharing our many reasons for that.  However, lately, people have gone from wondering to being down right rude. 

It struck me today as I watched my four very talented daughters, all doing different talents, with all different friends, that people absolutely do not know what they are talking about.  Everyone from numerous people at the school, complete strangers, people who have never met my girls, to even friends, assume that I am being head strong or maybe that I just haven’t thought it all out.  For some reason, it really bothers people that we keep all of the girls in the same classroom at school.  I am hear to declare that unless you are raising MY four quadruplets, you have no right to judge our decision.  I have researched this topic extensively, but even if I hadn’t, living with these girls and their unique connection makes it an easy decision.  If you need proof, look again at the videos and photos from todays show.  Look at their smiling faces, look at their creativity, look at their confidence, and look at their individuality.  Then, respect the fact that we are making the very best, informed decisions that we can make. Period.  

A family field trip

We have driven past Fair Oaks farm in Fair Oaks, Indiana several times over the years and Paul and I have always said that we wanted to bring the kids to visit this dairy farm.  A couple of weeks ago, an opportunity presented itself to go, and although the decision ruffled the feathers of some people at the school, we decided to pack up the van and head south for a day at the farm. 

Fortunately, I had called the farm the week before to gather information about our visit and the lady I spoke with told me that they had 300 school kids scheduled to tour the farm the morning that we were planning our visit. So, we had a leisurely breakfast at home and arrived at the farm right after lunch.  We had the farm virtually to ourselves. It was great!  We toured the exhibits, took a bus tour of the barns, saw the milking carousel where 72 cows ride around while being milked (which is worth the trip in and of itself),  played in the hands-on rooms, saw a baby calf being born, drank some very yummy chocolate milk and shared the best grilled cheese sandwich!   We bounced on the giant pillow, checked on our baby calf, bounced some more, and ended the day with ice cream.  Oh, and we learned some amazing things while having all of this fun too.

The kids favorite fact from the farm was that Fair Oaks turns the cow poop into electricity!  They are totally off the grid as far as power.  Their cows create enough electricity to power 750 homes.  I was very impressed with their commitment to reusing and being self sustaining.  My thought though was if they can power 750 homes, how many cows would I have to have in my backyard to power just our home????  I don’t think my neighbors would appreciate my power source though.  It did give us a lot to talk and laugh about as a family.

My favorite part of the farm was watching the calf be born. The baby was too big for the mom to deliver by herself and so a farm technician had to help her by pulling the baby out. By the time the calf came into the world, it was not breathing and the mom was not at all interested in helping stimulate the baby.  The technician did what she could and she gave us a thumbs up but I could tell that the baby was still not breathing. We all sat holding our breath and a tear slipped down my cheek.  Finally, McKenzy broke the silence when she screamed out that she could finally see the baby breathing.  The calf was still not moving much though so the technician opened up the gate between the two mother cows and the other mom, who had given birth about 40 minutes prior, went over to the abandoned baby and started cleaning it up and stimulating it.  It was really neat to see her take over.  However, her own baby wasn’t pleased that his mom had left him so he worked and worked to get up onto his wobbly legs to get over to her.  It was so amazing to see the bond between mother and baby.  By the time we did the final check on our calf before leaving the farm, he was standing up and doing fine!  What a relief!!!  Leave it to our family to catch a drama filled birth!

On the way home, once the kids were all kicked back watching a movie in the van, Paul and I looked at each other and talked about how great a day it was.  It was busy, tiring, and at times chaotic, but so worth capturing the memories together. That is what life is about for us.  Living in the moment and enjoying our time together as a family.  It was a great day…no matter what the school teacher had to say about it!!!

Feelings

I started to post a quick status update on Facebook but decided to jump over here instead.  I just finished with an administrative hearing with the state of Michigan.  We ordered a stroller type wheelchair for Keyan back in April of 2012.  I will not bore you with the details of why we ordered what we did but just know that we spent several months choosing the right one for her and were guided by the experts at Mary Free Bed Rehab hospital.  The State approved the chair but denied the recline option.  Again, I will not go into all the justification for the recline, but just know that it is NECESSARY!!!

You must know first of all that even getting the hearing was a struggle.  The hearing was originally scheduled for the end of November and the day before it was to be held, the state called and cancelled it.  They then rescheduled it for today.  Never mind that Keyan needs the dumb chair and their delays are preventing that.  Secondly, I received an 85 page document yesterday afternoon that the state was submitting into evidence….nice that I had time to deal with and understand that!  Lastly, you need to understand that this feature is a relatively inexpensive feature of the chair.  I can guarantee that the man-hours that went into preparing for this hearing could well have paid for her chair to recline.

The hearing began at nine this morning and I  was instructed that the state would speak first, I could ask questions, I would than be sworn in and could testify.  The lady that spoke on behalf of the state than proceeded to talk for 46 minutes.  It was unbelievable.  At the 46 minute mark, the judge interrupted her and told her that our time was winding down.  This was a shock to me.  I had no idea that the hearing had a time limit.  She wrapped it up, I was sworn in and began to testify fully understanding at this point that the judge needed to get on with his day.  I quickly summarized my belief as to why the recline was needed and than the state got the last word.  I was so frustrated.  I suppose with more legal training I would have thought to ask for an adjournment so that we could complete the hearing fairly but, unfortunately, I have not had the opportunity to go to law school.  Anyway, the judge told us he would issue his decision in writing next week and that was the end of it.

Here is what I know. I know that no parent should have to bear witness to their precious child being reduced to a policy or a bullet point in a document.  It was heartbreaking to have to beg for a simple thing to make Keyan more comfortable.  I know that requesting the hearing and fighting the denial was absolutely the right thing to do but I so wish that I had just figured out a way to pay for the recline option and not be subjected to the humiliating and dehumanizing hearing.  I know that we need the state’s assistance in caring for Keyan and that I will continue to fight to give her the best day.  But I sure did hate listening to someone fit her into a box.  She is so much more than that.  I know that no parent in their right mind wants to order a damn stupid wheelchair for their child, let alone fight like hell to get one.  I know that we are diligent in pursing all sorts of funding avenues to get what we need for Keyan, and it is exhausting.  We are not wasteful, we would love for Keyan not to need recline.  I know that this whole thing is ridiculous.  I challenge that nurse that made this decision to begin with to come out from behind her desk and live my life…no actually, I challenge her to live Keyan’s.  To be told what should be comfortable, to be told what isn’t necessary, to be told that meeting your basic need of happiness is not cost effective.  I challenge her to be as brave as my dear child.  To be as strong and carry around an additional quarter of her own weight on her back if she wants to try and walk.  I challenge her to have the gull to look my daughter in her eyes and tell her she doesn’t deserve to relax when she is exhausted.  I know our government system is overwrought with scams and users.  To the state of Michigan…we are not one of those cases.  See my girl for who she is.  See how she wants to live life to the fullest and than I dare you to deny her that. 

Our Angel

***Warning*** This post contains what some might refer to as “too much information.”  You have been warned!

 

I think it is safe to say that being the parents of five kids is exhausting enough.  Add to that, a child with complex medical needs, and needless to say, there is not much time to do anything besides meeting the needs of our kids.  Compound that by a discouraging diagnosis and prognosis and our life as a couple is absolutely non existent.

I firmly believe, in theory, that date nights, time away from the kids, good communication, and yes, even intimacy and sex are all necessary parts of a successful marriage.  However, that theory was before kids and Keyan.  Date nights are usually while sitting in the ER with Keyan or possibly a quick lunch out, talking is overrated when you are physically and emotionally worn out, and intimacy and sex are about the last thing to get done on the “to-do” list.  I know that it may sound pathetic, but it is our reality, I will not sugar coat it.  It is hard on a marriage, but also in pure honesty, there just isn’t a lot of time to worry about it.  We parent as a team, we make decisions as a team, and we do our best to connect with quick smiles shared over the kids heads.  We stand by each other thru thick and thin and that, in my mind, is more romantic than a few moments in bed.  HOWEVER….Paul may not agree!!!

So, that is the background information that you need to understand my story for tonight.

The boys of the house went to see a movie so we girls got into our jammies early and played games.  We finished the night with a movie.  Choosing a movie for all of them is somewhat difficult because if left totally up to her, Keyan would still choose a preschool aged movie. That is fine when she is watching by herself, but the other girls only have so much tolerance.  So, I picked one that was supposed to be about a puppy and we snuggled in to watch.  As the movie progressed, I knew that it was a little over Keyan’s head but she wasn’t complaining so I just went with it.  At one point in the movie, which by the way, never had a puppy in it; the mom and the dad were snuggling in their bed in the morning.  Keyan looked right at me and said, “Mommy, you and Daddy should do that!  You should snuggle in your bed in the morning time.  Well, not on a morning where there is school but on the days when we don’t go to school.  What day is it today Mommy?”  I told her that it was Saturday and she continued with, “Oh, than Sunday….Sunday there is no school right McKenzy?  Mommy, you should do that with Daddy tomorrow!  You can snuggle in your bed on Sunday morning!” 

I sort of chuckled, but than it struck me how right this beautiful little girl of our was.  I sat back and just stared at her as tears welled up in my eyes.  She had no idea that Paul and I are so overwhelmed and depressed that finding making time for each other has gone off the radar.  But I believe it was a message from our angel.  “Mommy, take care of yourself…take care of Daddy.  You need each other, cling to one another, and find solace in your connection.”  It  was a moment that I can’t describe accurately enough but it spoke to my heart.  Reality says I have no idea when Paul and I will steal a few moments to share anything other than tears, but it will come back on my priority list…thanks to my angel!

Tears

Tears are abundant at our house lately.  I am sure that it is to be expected, however, I don’t particularly like it….neither does Paul.  He has a hard time with tears.  We took all of our kids except for Keyan to get hot chocolate tonight and to talk to them about what we found out about Keyan.  It was tough.  Paul and I practiced what we wanted to say but nothing prepares you for the moment that you tell your children that their sister may die.  We needed to use that word and boy was it hard to get out of my mouth.  I wanted to step all around the word “die”, but in all fairness, knew that was the word and concept they would be most “comfortable” with.  My stomach was churning all day with the anticipation of what was to come.

Abagayle broke out in hysterical tears, McKenzy laughed nervously and tried to crack jokes and change the subject.  Jamahl and Sidney sat and stared off.  They all had a few questions but it was mostly Paul and I doing the talking.  We told them we wanted them to always be able to ask us anything and that we would help them all through whatever may happen.  It was terrible, it was hard, and yet, it felt good because it was the right thing to do.

Jamahl came home and snuggled right up to Keyan for quite awhile.  Sidney cried herself to sleep as I rubbed her hair and told her that it was alright to cry….and as I cried right along with her.  Abagayle is whimpering in her sleep.  My precious children just had a little bit of their innocence stolen away from them tonight and I hate it!  The responsibility weighs heavy on Paul and I as we navigate this with our children, especially because we are aching ourselves. 

Many of you have asked if Keyan understands.  We will not lie to her, we will not give her false information or hope, but Keyan is not developmentally ready to be told she may die because her stomach and intestines don’t work.  Keyan will not be able to fully understand that and it will only cause fear.  We talk about heaven a lot with her because she sometimes is very fixated on what heaven is all about but for now, that is the extent of it.  She has lived this way her entire life.  She is often in pain, often sick, and knows nothing other than tubes, hospitals, nurses, and loving life.  We will not burden her with the weight of this most recent news until she shows us she is ready.

I ask of you all that you please be patient with me and my family.  We are discouraged, we are teary, we are angry, and we are doing the very best we can to figure this all out. It is not easy. Please love on my kids. They are confused and hurting, and yet doing their best to get through their day. They are brave and yet so frightened.  Thanks for your kind words and thoughts, they seem to come at some of our lowest times.