Bravery

Over the last week, I have become more and more convinced that parenting takes more bravery than most other jobs.  I know there are those of you reading this that would disagree but it has really been on my heart and mind because I have needed more bravery than ever.  Jamahl is getting a pallet expander in the roof of his mouth and braces on his upper teeth.  I KNOW that many of you have been through this with your kids and all of them (and you) have survived but for some reason, this has been nothing but trauma for me.  Last week, when I took him to get his impressions and separators in, I literally had to force myself to go get him from school and take him. I HATE the dentist or anything to do with teeth and I have been so worried about starting this process due to the fear I have that Jamahl would get downright angry with us as the process went along or my worry that he was not emotionally ready for all that braces entails.  I called a friend last week and asked her what in the world was wrong with me?  I have been through MANY surgeries with three of the kids, broken bones with some of them, and I can talk about the mortality of my children. So why in the world do I feel so paralyzed about the orthodontist?  After talking through it all with my dear friend, I took several deep breaths, went and picked him up, and away we went.  We had prepared him as best we could without scaring him and my biggest concern was that I did not want to project my fear onto him! Well, we walked out of there an hour later and he never had a SINGLE problem.  As a matter of fact, in the threshold of the orthodontist office, he said that he was sort of excited about getting his braces on.  My conclusion is that when you are 10, it is still cool and acceptable to be the “first” one to do anything.  No one else in Jamahl’s class has braces and he is looking forward to showing everyone and explaining the ins and outs of orthodontia!  How cool is that?  Now, if he were 12…I am pretty sure it would be a totally different story.

So, on this eve before braces, we celebrated by having walking tacos for dinner since he can’t eat corn chips with his braces on.  We have re-read a lot of the information and looked through his bag of tools and tricks that he received last week.  He is calm and collected, occasionally asking a few questions that pop into his mind.  Me… my nerves are ramping up as the night wears on.  This is a tough one for me and while I may not ever really get the whys of my emotions, I am am certain of one thing.  Parenting my take a lot of bravery but it is nothing compared to my brave ten year old son who  is embarking on a new phase of life with his head held high and a lack of worry that I am SO proud of.  

Coloring eggs

Thank goodness for the expression, “Better late than never.” because when it comes to our busy household, I often have to cling to that reminder.  I spent a few hectic hours on Easter getting six dozen eggs hard boiled so that we could color them but as the day wore on, I was not feeling up to the task and the kids wanted to go get ice cream.  I had plans Monday night, so we all agreed to color eggs Tuesday night after dinner.  While not the norm, our kids just went with the flow and have been looking forward to it since Sunday. It was amazing how quick they were to help clean up the dinner mess so that we could proceed to eggs!

We had a great time dying eggs, tie-dying eggs, painting eggs, stenciling eggs, using shrink wraps on the eggs, making glittery eggs, and just trying not to crack the eggs!  I set everything out and gave all the instructions in the various methods and set them loose.  Keyan looked at me and said, “What are we supposed to do again?”  It was so cute…apparently my explanation was a little to lengthy for her.

  Our angel friend Grandma Gretta arrived to help with baths and she rolled up her sleeves and pitched right in to help some very excited little girls.  Grandma Gretta than told us that she had NEVER colored Easter eggs!!!  None of us could believe it but it was fun to teach her some of the tricks of the trade.

Several times throughout the evening I had to choke back tears as I watched the kids be creative with their eggs.  This was the fist year that we did not have a cup of dye spill and they were all just a little more independent.  They are growing up so quickly.  It is fun to watch their personalities immerge and come to the fore front in an activity like this.  We had music playing in the background and I loved hearing them shout out what musical or movie the songs were from.  Keyan had a great night.  She had energy and was participating in conversation.  We don’t always get that part of her at that time of night, but she was cracking jokes and obsessively trying to get all of the colors of the rainbow.  It was fun to have her interacting with us all, even if she is a disaster waiting to happen.  The girl does not have a gentle bone in her body so many of her eggs ended up with a few cracks in them.  We were all able to get a good laugh out of her antics! 

 

Jamahl stayed busy trying to get the perfect colors.  He wanted vibrant colors but I have a feeling our dye tablets may have been half a century old so he wasn’t having much luck but he didn’t give up and made sure to try all of the different techniques.

Sidney was very precise in her egg coloring and spent much of the night in deep concentration. She is a worrier and sometimes her fear of failure holds her back so we were so happy to have her jump right in enjoy herself.

McKenzy had a hard time leaving her hands out of the dye.  She couldn’t get used to using the spoon so she just kept reaching in and “checking” on her eggs.  She went thru half a roll of paper towel drying her hands and her eggs.  She wanted to put stickers on hers and was having an awfully hard time waiting for them to dry so instead she left her last two eggs white so that she could use the stickers.  Funny…but pretty ingenious!

Abagayle loved the shrink wraps, glitter, and animal print stickers. She is so into decorating things that this project was right up her alley.  Free reign with arts and crafts supplies makes Abby a very happy little girl. 

I went to bed last night feeling so blessed.  So often, I get stuck on everything that we don’t have but I was reminded tonight, that our lives are so full.  Full of sweet smiles, laughter, kids who are growing and changing, a closeness that is unique in today’s times, and an every growing love for each other.  I am so glad that we found the time to color our eggs this year…it really is better late than never!

Easter

After two and a half days in Cincinnati, Easter weekend was upon us before I knew it.  I came home from Cincinnati with pneumonia, a sinus infection, and pink eye so the little bit of preparations that I had done for the holiday before I left didn’t seem anywhere near enough.  Paul took the kids to an Easter Party with my brother and Sister-in-law Saturday morning while I slept and than my mom loaded me up in the car and drove me all over town to help me get everything done.  What would I do without Paul and my mom?  So, by the time I laid my head on my pillow Saturday night, all 125 eggs were filled, the inside ones were hidden, baskets were stuffed, and I knew that the next day would be a success.

Easter Day VIEW SLIDE SHOW DOWNLOAD ALL

We woke up the next morning to squeals of delight and major anticipation about hunting for eggs. We found all of the indoor goodies and settled down for a breakfast and Lego building.  It was amazing to watch Jamahl help Keyan look for her eggs and than help her build her fire truck before he built his own Star Wars ship.  He never ceases to amaze us with his unending patience and his caring spirit.  I know that I have said it before, but I truly believe that having a family member with intense and complex medical needs can be so wearing, but absolutely makes us all better people.  It is great to see this belief come to life!

Later in the afternoon, we went out to find all the eggs outside.  Over the last several years, this has become a well-loved tradition that all nine of us get involved in.  All of the eggs have a child’s first initial on them so everyone is always shouting out, “I see a “J”, or “I just spotted an “A”!  It is so fun to watch them running all over the yard and through the woods looking for all of their eggs.  It warms my heart to have the yard filled with laughter and lots of memories being made with each other and my parents.  The funniest part of this year was when McKenzy was all finished and looking over all her eggs, she claimed with great irritation, “Why does the Easter Bunny always do this???  He got most of my eggs right with an “M”, but he still did three “Ws”….that is is frustrating!  God love that girl, I thought she was kidding but she was dead serious and quite upset that the Eater Bunny couldn’t get them all right!  We all cracked up laughing at her “blonde” moment!

We finished the afternoon with Steak on the grill with my brother and his family.  It was great to have a day of family time after a busy week.  Most of the clan ended the night at Captain Sundaes for ice cream while Keyan and I curled up in the recliner chair and read books.  It was early to bed for me so that I could continue to get over being so sick and get ready for the week to come.  There was a lot of discussion this week over email and facebook about doing the “right” thing on Easter and celebrating the right “reason” for the holiday.  I have deep religious beliefs about the meaning of Easter and was starting to feel really guilty and confused about what I was doing for my family.  However, at the end of the day, it was perfectly clear to me that we had done the absolute perfect thing for our family.  No more guilt or confusion!

Cincinnati....why we go

This past week, Paul, Keyan, and  I traveled once again to Cincinnati for check-up appointments with Keyan's GI doctor.  Right now we are on an every three to four month visit schedule and it is amazing how fast that times goes!  For some reason, getting ready for this particular trip was a little more stressful than normal.  Several times during the week before, Paul would just look at me, shake his head, and say, "It is alright, I know you just get on edge before these trips."  And that was very true this time.  I am not sure if it was the couple of sick kids we were leaving behind, the debacle we had trying to rent a car, the fact that I was missing some of Spring Break, if it was me not feeling well, or if it was just the truth that sometimes this life gets to you.  Regardless of the reasons, there were several times that I wanted to just call the trip off.  However, we someone got all of our ducks in a row, and left Wednesday afternoon for our Thursday appointment. 

Keyan is such a great traveler.  As long as she has a movie playing and you stop frequently to use the potty, she is one happy girl.  She looks forward to seeing our family down in Cinci, especially their dog!  Our time away consists of an entire day of travel, most of the next day at the Children's Hospital, and than another entire day of travel so it is a quick and busy trip but Keyan never seems to mind.

On Thursday, I woke up feeling very sick and my face was very swollen.  Knowing the importance of the trip, I knew there was no time for feeling yucky, so I gathered my strength and we headed to the hospital.  I was sure not to touch anyone and used all of the germ protecting skills I knew. I had a lot of guilt about being there, but didn't see a whole lot of options.  We saw the doctor and his team and were able to discuss so many aspects of Keyan's health.  The doctor had some thoughts on her latest vision issues and threw out the idea of an MRI to be sure there have not been changes in her brain.  We will take that idea and tuck into our back pocket, discussing it further with some other specialists.  We discussed my belief that the vision changes may be a piece of the unknown puzzle of Keyan's underlying health issues and the team confirmed that that was not a far fetched notion.

Interestingly enough, when they were getting her vitals, they mentioned that according to the last height in January, she had shrunk.  Now, normally that would be written off as human error or some strange miscalculation but two weeks prior, Keyan had seen the developmental pediatrician where they too had commented that Keyan had shrunk.  One time is strange, but having been told twice that Keyan had shrunk was now quite alarming.  However, once again, we were in the great hands of experienced doctors where they were alarmed but not panicked and were able to give us some very logical explanations of why this may be occurring which gave us a peace to wrap around us. 

We than discussed her last few months of labs and they let us know their concern that she was running on the side of dehydration. Seeing Keyan in person, they were able to confirm the trends of the labs and again because they are experienced enough in all of this stuff, they knew how to get ahead of the problem.  In the end, they made the necessary changes to keep her hydrated without adding calories and give us a little more margin of error as the weather warms and summer approaches.

Here we were, all crammed into a little exam room, me coughing my lungs out with my eyes almost swollen shut, Paul trying to speak on our behalf answering and asking questions, Keyan justifiable a  tad irritated because her ipad battery is dead, and the doctor still takes the time to share with us his experience with labradoodles and why they make great service dogs!  It was quite the visit.

This is why we go....more than likely, going to Cincinnati will never bring that "a-ha" moment that we so desperately desire.  But it is no longer about that.  Cincinnati makes changes and tweaks things so that Keyan can continue this life.  This life outside of the hospital.  Had they not made the changes in her TPN this time, a few weeks from now, we would have found ourselves in a hydration crisis which could cause harm to Keyan's heart, kidneys, and liver.  Not only does there changes help head off a crisis but it also protects her organs which are in enough of harms way to begin with.  It was made so clear to Paul and I that no matter the stress to get her there, Cincinnati is more than worth it. It keeps Keyan with us and at home....loving and living this life.  We go because we have no choice.  We go because every moment in Cincinnati Children's medical center gives us more quality to Keyan's life.  We go because we have found a team of doctors that respect us and the history we have with Keyan, who care about all aspects of her life, and who will not stop trying to give is that "a-ha" moments we seek. 

Another shift in our world

I have sat down to write this post several times over the last week and have struggled to share where we are in life.  I think there is a part of me that hopes that things not talked about will just cease to be reality.  One week into a new reality in our household has proven that hypothesis to be false.  So…here it goes.

A week ago, I took Sidney, Keyan, and Abagayle to their bi-annual visit with the pediatric ophthalmologist.  McKenzy graduated a year ago so the three girls, myself, and our dear friend Grandma Greta went for what is always a very long afternoon of appointments.  Because much of the eye development happens in the third trimester of pregnancy, which our girls missed out on, they are at risk for vision issues and these appointments are vital for the girls.  Ironically, that very morning, the health department had been into the classroom at school to do a vision screening and all three of the girls had failed…..just the thing they needed to tell Miss Sidney!  She was a nervous wreck about failing a test.  So, I wasn’t surprised that Sidney needed to have her glasses prescription tweaked to get her seeing clearly again.  Abagayle too needed a little tweaking and in fact the doctor suggested putting her in bifocal lenses to reduce the strain on her brain and allow the brain to process things better.  “OK” I thought, “if it will help her focus and learn easier, let’s go for it…we can do this!”  And than it was Keyan’s turn.

I noticed right away that she was not answering the questions correctly during the initial exam and as the doctor continued to work with her, I noticed that she wasn’t able to see the letters on the computer screen at the end of the room.  She only saw one green light instead of two and when checking her depth perception with some goofy glasses and pictures that should jump out at her, she was not answering the same way that the other girls did.  I started to get slightly concerned but I told myself that she just needed to have things tweaked and she would be back in business.  That is why we were there right?  We had noticed that her vision was different but again just thought that she needed a change in her prescription.  However, as the appointment continued, it was quickly clear that something was going on and it was undoubtedly not good.  From our understanding at this point, the blood vessels of Keyan’s retina are thinning.  That means that the retina is not able to get the proper oxygen or get rid of the waste cells efficiently.  We do not know why it is happening now, although we know that she is at risk for retina issues because of her health history.  Normally, the issues do not normal surface until later in life.  Right now, we can not get clear answers to our questions as to if this will keep progressing, or if there is anything that can be done to stop the wear on her retina.  We have an appointment with the retinal specialist March 13th and are hoping for more answers and guidance to this new problem. 

Please understand, that Keyan has always been severely visually impaired but in the last three to six months, her eyes have taken a drastic downward spiral.  She is now legally blind in her left eye and the right eye is not far from it.  Needless to say, we were completely caught off guard.  Looking back over the last few months, we can see the signs that things were changing.  Keyan was falling more often, she was sitting even closer to the TV than normal.  She wouldn’t “drive” her own wheel chair in unfamiliar settings.  She was easily frustrated and at times irritable which is not her normal personality. She has been getting closer to people to talk to them and has been running into things in her power wheel chair.  All of these things could be explained by a hundred different things, but we now know it is because she is not seeing as well as she once did and is not feeling as confident about her surroundings.

It has been a hard week for me.  I am still crying on a daily basis.  Since finding out, we are hyper-aware of the differences and it is heart breaking.  I cry not because of what it means for me, but I cry for her.  When she asks me if the sidewalk goes up or down, when in reality, there is no slope to it, I choke back my emotions as I answer her.  When she tries to play a game on the computer and finally sits back with a heavy sigh and simply states, “I can not see,” Paul and I lock eyes and scramble to figure out what we can do to help her.  We have already started making different accommodations where we can.  I now tell her about changes in the terrain in order to help her feel more confident, and make sure that someone is holding her hand when we are not at home. We have ordered new contact lenses for her and a pair of reading glasses to help ease the strain on her “better” eye in hopes of retaining the sight she still has.  We do not know what the future holds for her eyes, but we are trying to grasp this new reality with strength and endurance….it may be a long road.

A road…that just seems so unfair.  I struggle with feelings of anger…SHE doesn’t deserve this.  She doesn’t need one more thing to make her dependent on others.  She doesn’t need another struggle!  I hate it! And yet, that anger has to be channeled into advocating, learning, and planning for her.  I know that Paul and I can do this, I just don’t want to. My head is spinning with things that we need to do and look into and yet the reality is that there is very little that can be done at this point.  I hate the journey of going through the process.  I hate the time that it takes, and I hate the not knowing.  You would think that I would be used to it, but the reality is that this has knocked my feet out from under me.  So, today, I keep taking deep breaths as we start putting our world back into some order, we are more thankful than ever for the sight that we have, and we ask that you keep our precious little Keyan in your thoughts and prayers.  I know that as she continues to face the world with less sight, she will do so with that big beautiful smile and joyful attitude that has carried us all through some very dark times.

Here is that great smile when she was bowling with her friend Max a few weeks ago….gotta’ love it!

Happy Valentine’s Day!

The air was buzzing with love this morning at our house!  The girls have been counting down the days until Valentine’s Day since we flipped the calendar to February.  The excitement was so fun as we took time to make each other feel extra special and loved today. 

 

Parents in Jamahl’s classroom were invited to decorate their child’s desk and surprise the kids this morning.  Boy were they shocked!  Jamahl just kept asking me when I had the time to do it!  It was really fun to watch his face light up as he felt the love.  Besides, who else knows his favorite candy bar! 

Paul and I sent the girls each a carnation at school this morning and they were equally surprised and smiling from ear to ear.  What a great reminder of how special we are to one another!

I did have to laugh this morning as I read my card from Paul.  Both the card that he gave me and the one that I gave him, talked about the “everyday, ordinary” love.  Like doing the laundry, cooking meals, ect. and how even though things may not always be perfect, we are happy to have each other.  While those things are certainly true, I couldn’t help but think how our choice of cards has changed over the last 13 years….I seem to remember cards that were a whole lot “steamier” than talking about laundry!  Funny how life changes and the focus becomes on being so grateful for each other and the life that we have created together.  Happy Valentine’s Day!

A long overdue post

Yesterday afternoon we spent a few hours at a very special birthday party.  All of the girls, but especially Keyan have been anticipating Max's birthday party since the moment we got the invitation.  The party was at the fire station and Keyan's little face was beaming all morning with the anticipation of going.  The party was so much fun and staying on usual par, they had special things for Keyan during birthday cake time and a goodie bag that contained all non-edible treats...although it did include this very high pitched fire truck whistle!!!! Anyhow, spending time with this special family reminded me that I never blogged about Keyan's last fire station adventure with her friend Max.  This post is long overdue!

Back in December, Max invited Keyan to visit one of the other local fire stations and had it all arranged that Keyan would get to RIDE in the fire truck.  We got a tour of the first station and all of their equipment, and than loaded up into the truck.  After getting Keyan situated in the passenger seat, Max and I climbed in the back and we all put headsets on so that we could hear each other. It was so fun to watch both Max and Keyan just light up as we drove straight down the main street of downtown Holland waving as if we were in a parade. 

The headset could not pick up Keyan's quiet voice so every now and than, Max would just ask her, "Keyan, are you doing alright?"  and the fireman driving would tell Max that she was fine and that she had a big smile on her face.
Our destination was a second fire station that happens to have a ladder truck .  You guessed it, the firemen went all out and took us up in the bucket.  It was a beautiful sunny day but very windy so none of us adults new how Keyan would really do but it could not have been more perfect.  She was just tall enough for her little eyes to peek over the bucket which meant her trach and airway were protected and she could enjoy the view. 

The thing that stands out the most is that if you ever meet Max, you will find that his love for all things "fire" is a passion.  So when he let Keyan do all the extra fun things, it made my heart melt.  Keyan rode in the front seat, Keyan got to control the stabilizing arms for the bucket truck, and Keyan got to do everything else first.  Amazing for a 1st grade boy.  After exploring the different equipment at this station and even seeing where the firemen sleep, we packed back up into the truck and enjoyed one last ride.  It was a great afternoon. 
My favorite moment of the day though was when we were getting ready to walk out the door of the station.  Max pushed open the door, saw there was some ice on the ground and said, "Hold on a minute Keyan, you have to be careful!"  And than just reached out and took her hand to help her across the ice.  It was priceless!

To me, him reaching out his hand to her is so poignant because he has literally reached out to her and helped her navigate the rough spots in life.  Making friends is no easy task for  a little girl who is hard to hear, has tubes everywhere, and isn't the most social little thing.  He has given her the present of the feeling of belonging.  Don't we all just long to be part of the larger whole?  Keyan may not really know how much she misses out on and she may not even realize how "different" her life may be from her peers, but because of Max, she knows what it feels like to have a friend.  She knows what it feels like to be important to someone else, and Max is helping her across some of those slippery parts of being a first grader.  He looks out for her, he genuinely likes to be around her, he isn't full of sympathy, but is aware of her uniqueness’s and just rolls with it.  I said it before, but I have to say it again.  This world would a whole lot nicer to live in if we all had the heart of Max.   

Just a reminder that you can see the slideshow in full screen by clicking on it!