Our life today

 This has been my view for much of the day today and actually several days over the past week.  Keyan is having a rough go of it and spends most of her time in her reclining chair or her bed.  Our dog Maddie is usually not far and she switches between the TV and her iPad.  She feels crummy and is having numerous retching episodes a day that last anywhere from 40 minutes to an hour and half.  We have seen these episodes increase in frequency and duration over the last 4-6 months or so but the last  week or two they have reached a new level....a de-habilitating level.

We have been in contact with all sorts of doctors both here and in Cincinatti , had some tests done, been to the ER, reached out to our hospice social social worker, adjusted her medications, stopped food, restarted food, we use heat, weight, essential oils, and pressure point massage....ALL to no avail.  We comfort, soothe, switch out towels, encourage, suction, and sit by her side supporting her the best we know how.  We have wracked our brains along with our medical team.  There is no simple answer to what is going on.  It is all so complex and complicated and ultimately there just aren't many answers.

I have zero energy or motivation today.  Caregiving is truly such an honor but it is tough work that is mentally exhausting.  There are so many other battles to fight on top of this one...the power wheelchair battle, the nursing hours battle, the supply battle, etc but they all cease when the hands on needs increase.  The problem is, these battles never leave my brain....the plates never stop spinning! 

Helplessness is a feeling that is so overwhelming.  It leads to sadness, fear, frustration, and even anger.  The hope that this is just a flare up of her disease fights the inner fear that this is a new normal.  The unspoken words and knowing glances shared between Paul and I are haunting.  The tears come, the deep breathes take over, and we keep on putting one foot in front of the other.  We want to believe that this too shall pass....and most likely it will.  But history says we will not regain all of the ground she has lost.

The other kids are worried.  They miss her spunky self.  They hang out in her room with her and rewarm her heating pack.  They yell for us when she starts gagging, and some run from the room because the sounds are too hard to bear witness to.  They love to hear her laughing in between retching episodes and make sure that her favorite shows are getting recorded to watch later.  Paul and I are so thankful for a friend who took the other girls to go do some fun things and just give them a break....they deserved and needed that. In there words, it is "gut wrenching" to watch her feel yucky.

She is such an incredible girl...she attempts to smile during the gagging, she always remembers to turn the lights off as we move from room to room trying to find a more comfortable position, she is discouraged with the continued pain in her stomach and looks at us thru big eyes and says, "I even prayed to God for this gagging to stop.  He is either saying no or wait because the gagging keeps happening!" "I just want to feel better." "The days go so much faster when I can go to school...no offense mom!"  

She sits while the minutes tick by.  The saliva runs from her mouth onto the towel, she can't vomit but the sounds are the same and her body lurches with every new wave of nausea.  Her mouth is stuck open and the muscles around her lips are sore from being in that position.  It is ugly and painful and is her life right now.  And she lives it with such grace and beauty. She is an inspiration and joy through and through! And as I type, she is singing along with a Disney song and that sound makes my heart so happy!

Middle School and High School

It's that dreaded time of year....back to school.  The kids all returned to school today after a great summer.  It was a rather uneventful summer but we enjoyed a lot of just being together, playing games, watching movies, swimming, bike riding, and spending time with friends.  

Today Jamahl started ninth grade at the high school.  He has a rigorous academic schedule and even taught himself geometry over the summer to double advance in math this year.  He chose to play water polo over football this fall and has been nothing but busy busy busy!

The girls are off to 6th grade this year at the middle school.  They were excitedly nervous this morning but had a great day.  Middle school is the first time that the girls will not be together at school.  They all have choir together but besides that they are dispersed all over the building.  For the most part, the three girls have the same teachers for ease and convenience.  Keyan will be entering the cognitively impaired classroom this year where she will spend a good portion of her day.  We visited the class last year once or twice a month and she has been SUPER excited to become part of that team. 

Dear God, keep these precious kiddos safe this year.  I know they are on the brink of really soaring in life and I am so excited to support those flights....to celebrate the successes and help pick up the pieces when it may not go as planned.  Surround them with adults who will love them, challenge them, get to know them, and support them through this season of life.  Please bring friends into their lives that will grow with them and be there for them no matter what.  Please help them nurture friendships new and old and may they always be kind to everyone!  May home continue to be a safe haven and give Paul and I unending wisdom.  Bless our children, thanks for loaning them to us to care for and love to pieces! We are beyond honored!  Ready, set....here we go!

State swim meet

Finally an overdue post about Jamahl's state swim meet that was a few weekends ago.  It was a LONG weekend with 10 hour days at the pool but it was a great one.  Because Jamahl does other sports besides swimming, he had a fairly short summer swim season so we didn't know what to expect when it came to the championship weekend.  However, when push came to shove he achieved exactly what we was hoping for.  He cut time in everything he swam, he placed in the top 16 in all five of his individual events placing as high as 7th in his 200 IM, his relay team took two fifth place finishes, and most of all he soaked up a great experience having fun with his friends.  I love the fact that Jamahl can see the big picture, not get too upset about anything and feel good about his accomplishments at the moment instead of getting caught up in the "should haves."  He was dedicated to the pool for the time he had available this summer and it showed that weekend.  We just could not be prouder of this kid!

                                                                     Warming up

 Butterfly

Back Stroke

Breast stroke

 Look at that smile!

 7th place in the 200 IM

 Enjoying his accomplishments

All worn out! 

Busy night

Tonight was a busy busy night for our household.  The girls all had a showcase of music for their school.  Abby had a solo; Abby, McKenzy, and Sidney participated in the record part; and Sidney played the alto xylophone.  They all did SOO good.  I could say a lot about the night, but I can sum it up in one sentence....How is it that my girls are about to finish the 5th grade?  It seems insane to me!

The recorder section...can you pick out our three girls?

Beautiful young ladies

Sidney playing the xylophone....so serious!

Keyan smiled thru the whole thing! She loves music.

At the same time, across the building, Jamahl was being inducted into the National Junior Honors Society.  We are super proud of his accomplishments and were so sorry not to be there for the actual ceremony.  Grammie was there for Jamahl and we got there as soon as we could.

Family photo

Grammie watched Jamahl be inducted into the NJHS at the same time as the concert.

He works so hard at everything he does...its always fun to see this side of him too!

An update from the hospital

If you are Facebook friends with me, you are aware that our family has been hit with the influenza A virus.  Abagalye came home from school last friday feeling yucky, McKenzy succumbed to it Sunday by noon, Sidney woke us up at 3am Monday morning and Keyan spiked a fever at 4:30 that same morning.  Because Keyan has an indwelling central IV line, anytime that she has a fever over 100.4, we have to follow a strict protocol which includes 48 hours of IV antibiotics inpatient at the hospital. It was at the ER that we got the positive influenza test.  We immediately started Keyan, Sidney and McKenzy on antiviral medication and hoped for the best.  It has been a rough week!

At this point, Abagayle is finally up and playing a little bit throughout the day.  McKenzy and Sidney aren't getting far from the couch or their bed but they seem to be done with the high temperatures, and Keyan remains in the hospital.  On Keyan's good days, her body does not have much of a reserve to help fight off an infection.  Therefore, this flu has left her very depleted and her body is having a hard time balancing things like fluids and electrolytes.  So, what we were all hoping would be a 48 hours stay to make sure her central line was protected, has turned out to be much more than that.  

We need to get her fluids balanced and in the right place in her body, we need her kidneys and liver to settle down, we need to get several of her electrolytes back to their normal levels, we need to control her nausea and gagging, and get her more comfortable.  That is our plan for the day.

Paul and Jamahl have stayed feeling healthy and we are so thankful for that.   After I woke up with body aches, fever and chest congestion yesterday, I have started Tamiflu and while I don't feel great, it could be A LOT worse.  I did my best to wash my hands like crazy but when you are dealing with trach secretions and all types of bodily fluids, your body can only fight for so long.  

I think the hardest part about this week has just been our family being separated.  While there was once a time when this was our norm, we have moved on from that time very purposefully.  The kids are older and feel the separation differently then when they were toddlers.  Keyan hates being away from her family and home and Paul and I are missing each other something fierce. We are trying to make decisions on the phone and keep things running at home and it is so hard to do effectively.  Thanks so much for those of you who have been praying, dropped off a meal to the house, and offered your help.  It means so much.  It complicates it so much with the other kids being sick and us not wanting to expose people to this nasty bug.  Continue to pray that Keyan's body can get some rest today and continue to heal and find its balance.  Pray for the rest of the kids that they don't  worry too much about her and deal with being away from mom.  Pray that Paul and I can keep trudging on, making the best decisions for everyone involved.  Thanks so much for supporting us through this journey.

Feeling icky and trying to rest

Art Show

Tonight we spent some time celebrating McKenzy and Keyan who were chosen to have their art work displayed at the Holland Arts Council.  It was a fun night looking at all of the various work and the girls really enjoyed seeing the high school projects.  After the show we continued our celebration with fro-yo!  We missed Jamahl but he was at his last middle school regular season swim meet...boo!

 McKenzy had her Sumie style dragon on display.  She was very proud of her hard work.  She used bamboo brushes and learned several different brush techniques.

 Close up!

 McKenzy and her art teacher Mr. Jackson.

Keyan had her piece entitled "Alien in Underpants" displayed.  Here she is with her adaptive art teacher Ms. Tenbarge.  Everyone laughed and laughed at this piece.  

Close up! She really liked the google eyes!

Our four girls...growing up too fast!

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.