My truth

I got the call today around 2pm.  I was in the middle of a Urology appointment with Keyan.  We had just finished her ultrasound and were waiting for the doctor to come in when I had a chance to listen to the voicemail.  It was our nursing agency.  My heart skipped a beat when the nurse said we would need to start the 8 hours of nursing per night March 1st.  The state is in the middle of our review and they have 15 business days to make a decision.  The state says they are on day 9.  Because we do not have a resolution, our hours revert back to the original plan which is 8 hours in March.  I thought I was gong to vomit as the Urologist walked in and casually asked how everything was going.  I swallowed the stomach acid and replied with a weak voice, "Its going alright."  What else was there to say?

And so it begins....We are still holding on to the hope that the state will reinstate hours at the end of the review period but the reality is that we know that hope is very thin.  For now, we cannot hold on to that.  We need to cope with what is in front of us.  Paul and I have spent a lot of hours over the last month trying to figure out the best use of those hours. We have calculated, pondered, and hashed over the ins and outs of taking over 4 hours of her intensive care.  Nothing is simple with Keyan.  Wether it is a bath, helping in the bathroom, meds, TPN, other IVs, nebulizers, or whatever else she needs, it takes an entire person plus some most of the time.  

My main concern has been coming up with a solution that causes the least amount of damage.  We can not escape this without damage being done.  Will it be damage to Keyan and her health? Will it be damage to our other kids because we are unavailable to them or just constantly at the end of our rope?  Will it be damage to ourselves?  Or will it be damage to our marriage.  We will do our absolute best to minimize the damage but there is no way to avoid the damage altogether.  That is the terrifying truth of this situation.  

Please hear me when I say, I know there are people out there that are dealing with much worse.  I have friends with special needs kids who get no help, or very minimal. I have friends whose kids have earned their angel wings and are soaring around in heaven....I am sure they would trade places with me in a heartbeat for more time caring for their children.  I have only survived the last three months by counting my blessings and trying to stay focused on the positive.  But that is not what this post is about. It is about my truth....my heart, my fear, right now.  It is about the fact that Keyan's disease it progressing.  She is becoming immeasurably more complex and will only continue to do so.  It is heart wrenching to live out.

It isn't about sympathy either.  It is about making you aware.  It is about asking you to take just a fraction of a minute and consider what people around you may be going through.  It is to help those of you who see us day to day or talk to us on a regular basis to understand that we are living a nightmare.  It is to explain why we seem despondent or out of touch.  The fear of making a mistake in Keyan's care, hurting our other kids, our marriage crumbling, or literally loosing our sanity changes us at our core.  It changes us to the point that we feel hollow...if we seem that way, just don't take it personally...please have patience with us and know that we are simply in survival mode. 

I want you to hear that care giver fatigue is a very real thing.  It makes me think things that I can't ever speak aloud.  It weighs me down with guilt every turn I make. It buries me in grief beyond that which I can fight off.  It takes the spark out of my eyes and as I look into Paul's eyes, I see that spark fading too.  Look out for people in your life that may be experiencing this.  Smile at them, give of your time, your talents, your energies. Reach out to them and let them know that they matter.  That you see them.  We often feel invisible.  Please don't lecture, or pretend to know what they are living though....think of how the world would change if we really tried to put ourselves in others shoes.  I'll say it again....everyone has their own crap....please be mindful of what people in your life may be suffering though.

Bowling

This morning Keyan had a bowling tournament with the Special Olympics.  She has been practicing once a week since December and was super excited about the tournament.  We were up early so that she could be bowling by 8:30 in the morning.  It has been a constant debate whether Keyan should bowl using the ramp or not but she is adamant that she wants to do it without the ramp so that is how she did it!  She bowled a 60 her first game which included a strike.  Her second game didn't go as well as she only scored 12 but she gets SOOO tired after one game so that was not unexpected.  She cracked us all up with her competitive spirit.  She was not happy with her run of gutter balls.  It was a great morning despite her frustration at times.  The Special Olympic athletes are such an inspiration with their "can do" attitudes and smiles.  Our other girls all got to miss the day of school to come cheer Keyan on and they did a great job encouraging not only her but several of the other athletes that we have gotten to know.  It was so fun to watch.  We missed Jamahl but he had a test at school that he didn't want to miss so we will have to fill him in tonight.  I want to give Amy Bradley a huge shout out.  Amy is Keyan's school nurse who volunteered her time to go with Keyan to practice every week so that Keyan could get a break from mom!  Thanks Amy....we love having you take care of her!   Enjoy the pictures!

Her cheering sisters!

We love being able to support her in her adventures!

Her bowling partner Mrs. Bradley!  Mrs. Bradley keeps her safe  and helps her maneuver the bowling lanes!

Mommy steals a quick pic between frames.

SOOO excited after her strike.  She is actually this excited as long as she gets at least one pin down.

Daddy trying to give Keyan a pep talk to boost her moral....Paul says she gets her competitive side from me!  What???

The fight continues...

Keyan waking up this morning...it was a snow day and she was determined to sleep in!

Some of you are aware that we have been in a battle regarding our nursing hours for Keyan.  The state says that because she had not been in the hospital or the ER during the 6 month period of time that they looked at, and because she goes to school, they are only obligated to provide her with 8 hours of nursing a day instead of 12.  I will not waste my time arguing these points here, but will just say it is absurd.  

Last Tuesday, February 2, we went before a judge to appeal the decision to reduce her hours.  It was an intense hearing where our integrity and dedication to our children was questioned and our words were used against us.  It was frightening, nerve wracking and took every ounce of my self control to behave in an appropriate courtroom manner.  We walked out believing that we had done everything that we possibly could do.  It was clear to us that afternoon that if the judge held the ability to change Keyan's classification, he would and we would win, but if he could only rule on whether the state acted within their rights based on the classification they gave her, we would loose.  

The judgment came in the mail today and the judge upheld the state's decision to reduce the hours.  It is exactly as we thought, he could only rule on the legality of their decision.  He wrote right in his judgment that it was clear that Keyan has significant issues and requires enormous amounts of care.  He urged us and really her nursing agency to seek a reinstatement of her hours with documentation that shows a more accurate picture of her condition.  We as her parents can not ask for this review, it will come from the agency but we have them on our side and I know they will do whatever they can.  This process is tiring, discouraging, and so many more things that I don't even have the energy to name, but it is not within me to give in.  After the hearing, we now have documentation that shows they have her classified wrongly.  We just need to get it into the right hands and jump through the right hoops.  Meanwhile....we do our best to not panic, take care of our kids as best we can, and juggle the hundreds of balls coming at us.  Thank you for your support throughout this ordeal and please forgive us if we seem discouraged or withdrawn.

Halloween 2015

We continued our tradition of having a small family party at our house this year for Halloween.  Why is it that the day before and the day after this spooky holiday are often pleasant but inevitably, the weather is horrible on October 31.  It is the craziest thing!  Planning indoor games and goodies has saved us the grief of trick or treating in the elements and also helps us keep Keyan dry, warm, and healthy!  Without further ado....here's a glimpse into our night.  

The woodlawn fairy, the owl, the water fairy, the bumblebee, and Jim Harbaugh

Beautiful Abby

Fancy Sidney

Who would ever give this boy a whistle???

Smiling Keyan

Cutest bumblebee

Lucy is really flying!

Her famous sprinkler move

Dance party!

Look at these attitudes!

Living in the moment!

The winning skeleton scavenger hunt team

Witch hat ring toss

The daddies take a turn

Look at the chaos...imagine the noise!

Poppy is up!

Grammie too

Making a mummy! These two make such a good team.

Lucy mummy

These are two smart smart girls!  Twirl is on!

Cutest team

Aubrey decided she wanted a turn

She LOVES Maddie and Maddie kisses.

She also loves her mommy and suckers!

Lucy sorted and counted her loot

Mimicking the coach

Trials

I am struggling.  I need to write.  What to do though if my topic is a taboo one?  I have gone back and forth for several days struggling with wanting to write and trying to talk myself out of it.  I am giving in.  This is my stress relief and I want to write what needs to be written...what shouldn't be taboo or shameful. So, here it goes.

Before I get to the heart of the post, you need some background information.  The last three weeks have been very difficult here at the Hogan house.  We have gone back and forth with the school trying to find a good fit for Keyan's days.  It has meant hours of meetings, observation, research, tackling issues head on, and facing the realities of the widening gap educationally between Keyan and her peers.  Facing these realities are not easy but we will not let her down because of of our own feelings.  I have literally put hours and hours of work into figuring it all out.  As of a week ago, we have a plan that we have agreed to but I will still spend a lot of energy ensuring that the school is doing the best they can for her.

On top of navigating the craziness of school, Sidney was diagnosed with mono right after school started.  She has likely had it for quite some time and it is affecting her Kidneys, liver, and spleen.  She is miserable most of the time.  She has no energy, her throat hurts her very badly, she fights fevers every day, and her body is simply fatigued.  She finally made it to two hours of school three days this week.   Every parent out there knows the pain of watching your child not feeling good.  The feeling of helplessness and frustration as it continues day after day.  We have been to the doctor several times despite that it is a virus for which we can do nothing.  It will just take time, and apparently lots of it.  Her appetite has disappeared along with her immunity so she feels very crummy.  I have a lot of guilt about not catching it sooner so that it wouldn't have gotten this bad but it is what it is and we are dealing with it the best ways we know how.  These things, along with normal life things like sports, dinner, lunches, groceries, laundry, a nursing shortage here at our house, homework, some health issues for myself, parent meetings, family decisions, and many other things, have left me utterly exhausted. So, when this particular Friday morning happened, I may have already been posed for a breakdown....and it came. 

It came with a urgent "Stephanie" called from the nurse in the bathroom with Keyan.  My stomach fell with the knowledge of what she was going to say.  Keyan had started her period.  The air left my body as if I had been kicked.  The tears came along with the quick thoughts of how to handle it.  A hug from the nurse, and an "I will run to the store;" from my friend who comes on Friday mornings to  help out, was all the time I took for tears at that point. I needed to face Keyan without tears and help her decipher what in the world was going on.  Between the nurse and I we explained what was happening, cleaned her up, and helped her move on.  Yes, we had read several books on puberty and body changes.  Yes, she had seen the video at school about all of these things, and yes we had discussed it all as things happened.  It did not matter.  Nothing could prepare our 10 year old little girl for this life change.  Oh, and did I mention that we had an all important IEP at the school that morning that both Paul and I needed to attend?  The timing could not have been worse...although at least we were at home.  For that I am grateful. 

I assume it is easy to be reading this and be thinking "What is the big deal?  It is something every girl goes through."  Let me explain the big deal. While children with cerebral palsy and some other special needs do tend to face puberty at an earlier age than their peers (to which I ask how fair is that?), Keyan is in an even more unique situation.  The IV fluids that give her all of her nutrition is adding fuel to the fire.  The fats that are in the solution are soy based.  Soy is interpreted as estrogen in the body. So, her body thinks that it is being inundated with estrogen all the time.  That is the reason we are at this point.  She has very little body fat, she doesn't eat hormone laced meat or milk, there is no genetic reason to start at 10, it is the very thing that keeps her alive that leads her down this road.  She is not "becoming a woman" her body just feels that way.

This has been our experience thus far:

Products: Having her wear a pull-up would be the easiest solution an the one that would probably be the most effective.  That is fine for night time, that is what she is used to.  However, while she is cognitively delayed, she knows enough to want underwear on during the day.  Ok, pads it is...Can I just say that pads, even the new "teen" lines, are not made to fit in a size 7/8 little girls underwear.  It has been a trial trying to find something that both works and fits.  

Internet: My first stop was a google search of "developmentally disabled girls and periods," then "starting periods at a young age"....what I found was fairly minimal and even harder was that Keyan didn't fit into any one box.  She not only couldn't really understand what was happening but so much of the advise was not pertinent to her because of her medical complexities. Over shadowing at all is the largely held belief that we shouldn't talk about menstruation and we should keep it behind bathroom doors.  I needed help....and while I normally would hop on Facebook and ask if anyone knew of an OBGYN that was good with disabled children, I knew that would only lead to more questions that people didn't really want to read on social media. It is crazy that 50% of the human population deals with their period every 28 -32 days and yet on the whole, society wants to act as if it never happens.  Girls and women often suffer from severe symptoms and no one wants to talk about it yet alone when it is happening to a child.  I shut the computer feeling even more confused.

Independence:  This is probably the single hardest one for me.  We have worked SO hard over the part year to give Keyan more dignity and independence in the bathroom.  The bidet that we raised money for and purchased has changed not only her life but ours as her parents as well.  With the bidet, she is able to be almost completely independent in the bathroom.  It is awesome!  It has opened up so much for all of us.  Her diseases means that she can spend a lot of time in the bathroom and now she doesn't have us nagging her to see if she is finished. Her period took that independence right away from her...at least for that time of the month.  She is not able to care for herself while having her period.  It feel like we are right back where we came from and it makes me SO sad.  

Help: Along with a loss of independence, a period for a 10 year old developmentally disabled child also brings with it the need for education, and not just for Keyan.  It never crossed my mind until it happened that I would have to teach Paul how to deal with a period.  Dads are supposed to be on the periphial on this sort of thing.  There is no such luxury for this Dad.  He has handled it with amazing attitude and his "all in" outlook,  but I know it pains him.  You can see it in his eyes.  He gets through it by looking at it as a medical thing, but it is hard.  We also have to talk to our nurses about symptoms, management, emotions, ect.  There is nothing private about this situation. (And yes, I see the irony in that statement as I am blogging to the world about this!)  I just keep wanting to scream, "my 10 year old is having her period and there is nothing fair about it!"

Medicine: Due to Keyan's underlying disease, we can not use ibuprofen or tylenol for her.  That leaves us with narcotics and a heating pad to manage her symptoms.  She looked at me on the second day and said, "Am I going to feel like this from now on?"  She had never complained but was aware that she felt different and I do not have the basic medication to help her.  We are tracking down some other options and we see an OBGYN in a couple of weeks but it has just been one more thing that sets this apart from anything "normal."

Technology: I was determined Saturday morning to embrace this and figure out how best to handle it. I knew that I needed to keep track of all the lovely details so like I often do, I turned to technology.  Certainly there must be an app for this to make things easier.  I open up the app store, typed in a quick "period tracker" in the search bar and I was off into yet another reminder of how unnatural this was.  Every app that I opened not only charted a period but also ovulation, fertility, had a place to make down "intimate moments", and a place to write up information about your "partner."  What??? I decided to stop the search for the time being and get into the shower.  

As the water poured down around me, so did my tears.  I sobbed like I haven't in a long time.  As I fell to my knees in the shower, I sat there wondering what was wrong with me?  Why could I not control my emotions and just deal with this matter of factly? And then it hit me and hit me hard.  I felt not only sad, and angry but so so alone. LONELINESS  was my prevailing thought.  Where do you turn when your child doesn't fit in any box, is outside of both the normal and the abnormal? Forging the trail is difficult and lonely. Piecing together a plan is a lot of work.  Everywhere I turned, I was reminded of the extreme of our situation.  I turned to friends with older daughters and they were able to help and make suggestions.  I turned to friends with disabled daughters who also gave me some ideas and understood my whole "this sucks" attitude.  I turned to Paul, because I was still seeking someone who could understand and that is when I gave in to the fact that this was up to us.  No one was going to be able to guide us through Keyan starting her period.  And so, through tears that have continued to come, we are figuring things out.  We have some new ideas, some appointments, and some some thoughts that we will continue to sort out and work towards a better understanding of how to help our girl.  There are no cut and dry answers. It is a process....a painful, lonely process, but one that we are continuing on because it is what you do as a parent to such a special kid!

Another school year prayer

Ok God....I am gong to try to keep this short.  Here we are headed into 8th grade and 5th.  I am having a really hard time wrapping my head around this God...how in the world did we get here? The kids are growing up so fast.  They are maturing and changing almost daily.  Not only did I have to curl and straighten lots hair this morning but their personalities are growing up too.  It is a fun time in our household.  I love watching them become people.  

Jamahl has a big year this year.  We started on the road of advanced class two years ago after so much prayer and worry.and now here he is already working on his high school GPA.  He was nervous last night about the logistics of high school classes, football, swimming, friends, and new teachers.  I know he will do great though! Please keep him safe in all of his endeavors and thanks for the loving spirit you have given him.

Our girls...I have tried all summer to help them learn to pick their own clothes out and they have been dressing individually and what do you know?  They decide last night to wear matching dresses!   I think I better just stop trying to figure them out!  Thanks for giving them each other.  They have the ability to be such a united force and support to one another.  Thanks for their kind hearts and giggly souls. They were so excited to be 5th graders today.  Give them a great year.

Dear Lord, help Paul and I navigate this stage of life with these precious kids you have loaned us.  Help me to continue to let them spread their wings even when it hurts my heart to watch them learn that independence.  Grant me some peace today and the days going forward to know that they are safe, being loved on, learning, and enjoying their day.  Guide us in making decisions for them all and help us to love them with both our words and actions.  Protect their minds and hearts, may they keep their youthful hearts and always know that they are surrounded by people that care so deeply for them.  

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.