The Steps I Take

Warning: This is not a happy-go-lucky post. This is me, sharing my heart!

Keyan and I are finishing our 15th day in the hospital with no end in sight yet.....I can not believe it. My mind can not come to terms with the fact that I have no idea when we are going home. Nothing is going right. We make a small step forward only to take a giant one back, and although we have been down this road far to many times, it is really taking a toll on me. A couple of years ago during one of Keyan's admissions, I took to walking the halls. Floor nine center at Devos Children's Hospital is one big rectangle, seventeen times around the "block" is a mile. So, whenever Keyan is sleeping, or there is a nurse or therapist in her room, I go out walking. I even have a friend that comes and reads to Keyan so that I can go walk the floor.

The staff all know this is what I do and also have learned that I am probably walking because I need some time to think. It is extremely difficult to have deep rational thoughts while confined in four walls with a five year old! I am not inherently an exercise fan but I have learned that the rhythmic sound of my feet hitting the floor lulls me into a world where I can access the depths of my heart and deal with the emotions that boil up. My thoughts this time around have been more reflective than usual. Five years ago the girls were born in this hospital and thus we began on this crazy journey. Five years ago, I was discharged from the hospital and had to walk out to the car without my babies. How ironic that we are still doing that?

While walking I ponder life from Keyan's point of view. She is such a trooper with an amazing spirit. Through everything she is smiling...it is unbelievable. She never holds a grudge after we poke her for the hundredth time, she never gets angry at me for holding her down for another procedure. She greets everyone with her infectious, twinkling eyes, even though everyone that comes through her door is wearing a gown, gloves, and a mask. She is so tolerant and forgiving.

While walking, I try and deal with the guilt I feel about what she goes through. We do our very best to give her the best quality of life possible, but for me as her Mom, it is never enough. Is there something else that I should be doing? Is there more research for me to be seeking out? Do I need to advocate for her better? What can I do to make her more comfortable? I figure out calorie counts in my head, I go through the lab numbers from the morning making sure we haven't missed anything. I wonder what movies and crafts I can find to keep Keyan entertained in her tiny little room. I question the fairness of this whole situation, and wonder how my family is doing without me. I wrestle with thoughts that are to private to discuss but that haunt me in those quiet moments alone.

During my trips around the ninth floor I do a lot of talking to God. It is probably more like yelling, arguing, screaming, crying, and debating with God but you get the picture. I know we are blessed in so many ways but why does Keyan deserve to go through this? Why does she have to be separated from her family time and time again? Why is it that the nurses become my friends and my support system? How is a person supposed to stay "alright" when the abnormal becomes their normal? When will this ever end for her? Will she deal with this her whole life? Will this be the time that she doesn't recover? How long can she sustain a life of medical complications. I know these are disturbing thoughts but these are the things that I grapple with while pacing the floors. I think about how much I love her and how much joy she brings our family. Her idiosyncrasies that at times drive me crazy bring a smile to my face while I am putting one foot in front of the other.

So often, the nurses will ask how many laps I have done...the truth is I don't always keep count, I get lost in my thoughts. The thing I know for sure is that in the last five years I have walked far too many miles on this floor. Walking has become a survival technique for me, time to purge my head and heart, and prepare myself for the constant battle of taking care of Keyan. The thoughts bounce around in my head until I can settle them by walking. Who would have thought that I would find solace and some peace in the hallways that have become our home away from home?

Halloween, Birthdays, Where are they????

I know that some of you are wondering where in the world I have gone. I am behind...never got halloween pictures posted, and now the girls birthday was Saturday and I have yet to post about that. In case you did not know, I have no good excuse for the halloween post, but the birthday one is a whole other story.
Keyan has been in the hospital for the last 8 days. We have spent time in the ICU unit and are now on the regular floor. She was admitted with pnuemonia in both lungs, a bacterial infection in the lungs, c-diff (a different kind of bacterial infection of the gut), and dangerously low levels of potassium. Some things have been resolved, other we are still in the midst of. She will be here for awhile yet as she continous to heal and we work back up to her tolerating feedings.
We did do some birthday celebrating but I do not have my computer so I am unable to upload pictures. It was an emotional day for the adults of the family but I think the kids all had the best day possible with all the stuff that is going on......now on to Jamahl's birthday this Friday. It is so hard to be away from home but luckily my Mom, Dad and Paul are holding down the fort. I do not know what we would do without our family! So, please check back for pictures of the girls turning 5...until then, please pray for Keyan. She is very sick and we have so much to figure out. Paul and I need a lot of wisdom and patience as well as the stamina to endure the ups and downs of sickness. Thanks to you all!

A year ago....Day 6, It all comes to an end

It was just over a year ago that we went on Keyan's Make-A-Wish trip to Disney World. To commemorate the trip, I am finally going to post about the last day! This was a journal that was VERY hard for me to write. It was an intensely emotional experience that I needed to sort out for myself before I shared it. Well, a year later, I guess I am ready to open up my heart and soul....here it goes!



Have you even been awaking from a wonderful dream, realized it was going to come to an end, and you find yourself desperately trying to stay asleep? As sleep leaves you, you find yourself almost depressed that you can’t get back to that amazing dreamland? If you can relate to that feeling, you know how at a loss I felt during the last day of our trip. Falling asleep the night before was almost torturous, because I knew that we would have to go home. I was determined to not let my gloominess get in the way of enjoying our day, but it was so hard.
We started our day with breakfast at the Gingerbread House. I think that I cried all night long in my sleep and the tears just continued to flow the entire day. It was so hard to think about going back to reality. While I was standing in line trying to order my breakfast, I broke down. I am sure that the volunteer thought that I was crazy crying over the sausage and pancakes, but they never said a word. Every one of them just smiled and nodded probably knowing that my heart was breaking. They gave me the space I needed to grieve the ending of a magical experience and that was so respectful of them. Even my own kids seemed to understand my need to cry and never questioned what was wrong with me. Had someone asked, I would not have been able to put into words the emotions that were running through me. I hated to go back to all of the appointments, the struggles for Keyan, the fights with the insurance companies, the time spent in the hospital, the limitations on what we can do, the feeling of being torn in two as they start yet another IV on our precious girl. I wanted to stay in this safe zone, this altered world where we were normal… This place where we could enjoy time together as a family without all of the painful interruptions. I literally wanted to scream at the thought of returning to our life that can be so imprisoning sometimes. It was so hard to know that no money in the world, no amount of good deeds, no nothing, could give us a repeat of this vacation. It truly is a “Once in a Lifetime Experience”.
We had until around noon that day before we had to leave for the airport. We had been so busy throughout the week that we had really been unable to take in all that “Give Kids the World” was all about. So, after getting everything packed back up, we headed out to explore the grounds. We played arcade games that took no money, drove remote control boats, rode the train, saw the toy train village that had so many functions we didn’t have time to check them all out, and we even attempted to play miniature golf. We decided however, that unless we wanted to take a child home with a concussion, it was best that Daddy and Jamahl finish the golf game by themselves! We walked by the sleeping tree one last time in attempt to wake him up and that brought us to the “Castle of Miracles”.
The “Castle of Miracles” is a very enchanting place that is truly magical. All of the kids got to make pillows in a special pillow machine, we rode the carousel a few last times, and the most important thing was that Keyan got to put her star up. Inside the castle, the ceiling is covered with shiny golden stars. Each child who comes to the village for a wish gets a star with their name on it put up on the ceiling. The star is left in your villa and you take it to the castle to have the Star Fairy hang it up. Keyan went thru the magical process of writing her name on the star, placing the star in the fairy’s treasure box, making a wish, and then when she opened the box, the star had been taken by the fairy. It was really neat. We have the exact coordinates of where Keyan’s star is placed. It is a very humbling experience to stand under hundreds of thousand gold stars realizing that each one represents a child who has had a dream come true. You know that some of those children are no longer here on this earth but instead, looking down through the stars helping our strong but sick children who are still with us. As you can imagine, I stood in awe, with tears streaming down my face. It was as moving as the most spiritual moment in my life. God was in those stars…even my dear Keyan’s star. It was such an affirmation of God’s promise to never leave or forsake us. Keyan has been thru so much and so has our family, but we have been guided and strengthened by our faith. I will never again look up at a sky full of stars without getting a pull at my heart.
The rest of the day was just going through the paces of getting back home. The plane rides went great. The girls caught up on some much needed sleep, Jamahl caught up on his homework, Paul caught a few winks of sleep as well, and as for me, I just cried. It was a healing cry way up there in the sky. I used the time to gather my strength and emotional well being so that I could be the Mom that these five special kids need me to be. The kind of mom that fights their battles and stands up for the wrongs done to them. The kind of mom that challenges them to perservere through the rough patches in life. I need to be a mom who laughs with them, plays with them, and loves them no matter what. That is what this trip did for me. It showed me some of the deep dark corners of my heart. The corners that show how much I dislike being a parent to a child with special needs. It made me take a hard look at the real me. It made me realize the endless amount of pride that I have in my family and thank God for choosing me to be their mom. I will never be the same. My spirit is softer and gentler. I have learned to value that quiet voice inside of me that urges me to keep going. The Make-a-Wish organization did more than grant Keyan a wish. They challenged our family to embrace life and be better for it. They truly changed my world.

Time to play catch-up!

We are swamped with craziness at this house but I thought that I would do some quick updates...

A year ago, when we left our Make-A-Wish trip, they gave us passes to several different amusment parks around the world that were good for one year. That year was fast approaching and we really wanted to get to Michigan's Adventure up in North Muskegon. We had been trying to get there all summer, but the weather never cooperated so we decided to go on the last weekend that they were open for the season. We had such a fun day! The weather was beautiful, the park was not busy at all, and the kids had a great time. Thank you Make-A-Wish for another great family memory!

The kids have been very into picking our friut. Personally, I would prefer to just buy the friut at the farmers market, but I guess it is all about the experience. We visited Cranes Apple Orchard to pick some Honeycrisp apples. Why in the world did I pick a Sunday afternoon to go and did it need to be 90 degrees out??? It was insane. We waited for over an hour to get a table for our lunch, than we had to fight the crowds at the orchard. I have never seen anything like it....next year, we will go during the week after the kids get out of school. Despite the occasional complaining(mostly from Mommy about the heat) we had a good time! And I do have to say I have made some very good glutten free, dairy free, egg free apple bread and cake!

That is it for now....more catch up before Halloween, I promise!!!!

It is school time again!

I can't believe that the summer has come to an end. We had a great one even though it was not as warm as we would have liked it. We spent a lot of time at parks, at the pool, having pajama days, going to the library, playing Star Wars, and just being together. I am NOT ready to do the whole school thing but I guess ready or not, here it is! Jamahl is in 2nd grade Spanish Immersion and the girls are doing young fives which is a half day, every day. Keyan has a nurse that we are working on training so I got to stay at school with the girls today, which meant fewer tears for me....wait until I actually have to leave!

Jamahl got up without to much trouble which came as quite a surprise. When I asked him if he was actually excited about going to school he said, "No, but I thought about it this morning and even though I really don't want to go to school, I know that you will probably eat out for lunch and I REALLY don't like to do that, so...I might as well go to school!" Now that is a real hatred or eating out!! By 4:15 this afternoon I had everyone home. Jamahl was working on homework, the girls were fighting like crazy because they were so tired, and I was hard at work filling out the 25 forms that came home with them all! It was a great day.

Jamahl has every "Star Wars" shirt that we could find...anything to get him to school happy!

I took this picture because Jamahl has officially surpassed me in shoes size....and he is only 7!!!!The traditional picture beside the dinosaur I think he looks so grown up in this picture. Will I ever get used to them having to go back to school? It is finally time for the girls to get going. We had four very excited little girls and a couple who said they were a little nervous. This is the first time that I have realized their strength in numbers. I was MUCH less anxious to have them starting because I know they have each other. Wouldn't be nice to go thru life with a constant buddy?What other parent goes to school the first day with a basket full of medical supplies and an oxygen tank? We thought is was pretty funny!Keyan was ready to take on school and was so excited that "the guys" were going too this time.McKenzy was very excited about her new backpack and playing on the playground.Sidney was one who was a little nervous but she did great. They went to art class which she of course loved so she thought maybe school was not going to be too bad.And than there's Abby...ready to conquer the world, meet new friends, learn to read, play dress-up, and let the world know that Abagayle is a forced to be reckoned with!!! The school nurse came in to the classroom to talk to the kids about all of Keyans "cool, special things....that we don't touch!" She did a fantastic job and Keyan was so proud to show off her uniqueness....we must be doing something right!

More pictures

This is a slide show put together from Gretchen's pictures from the weekend. It includes the Slip and Slide pictures!!! Enjoy....if you evere need something to do over Labor Day Weekend, I highly recommend Camp Geneva Family Camp!

Family Camp

We spent Friday evening through Monday afternoon at Camp Geneva for Family Camp. Due to our situation with Keyan, we did not sleep there, but we were at camp for breakfast and we stayed until the camp fire. We had such a great time. Our friends Gretchen and Luke and their three kids came up from Indiana and went to camp with us and that made it even better. All of our kids had lots of time to play together, and the adults even had some snippets of time to catch up and "solve the worlds problems!". It was a fantastic time to spend together and a great way to end our summer. This time, I am not going to blog a whole lot because I am extremely exhausted from swimming, archery, crafts, large group sessions, slip and slides, playgrounds, and lots of other activities. However, to get the full story, click on the slideshow so that you can read the captions. Hopefully, you had a great holiday weekend. I will have to get pictures from Gretchen to prove that we Moms conquered the slip and slide!!! Stay tuned for that and our back to school post!