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!

The Big Brother Hero Day

I am so sorry that it has taken me so long to get this posted! Getting five kids ready for school is proving to take up way more time than I expected! I know that many of you are wondering if Jamahl got to go on his hero day yacht trip. Yes indeed, two weeks ago, on the one sunny weekend we had in August, Jamahl and Paul got to spend the day with the George family on their boat. Saturday morning came and Jamahl was so excited, I think he wondered if the afternoon would ever come. Finally we got the word that the boat was in Holland. We packed everyone into the car and drove down to the Marina. All of the girls, myself, and Grammy and Poppy went to wish them a great journey. It was so fun to watch Jamahl taking it all in. When he boarded the boat, they had some more pirate stuff waiting for him and a disposable camera with his name on it. The look on his face was priceless. I still don't think he realized this was all because he is such a great bog brother. It was great to meet some more of the George family...the boys were almost the same ages as Jamahl. The boat was beautiful, the weather was great, and everyone was looking forward to spending some father-son time together. It didn't take long for the girls and I to get "kicked" off of the boat since it was a boys only day! (That made it so fun for Jamahl!) We waved goodbye and both Jamahl and Paul were grinning from ear to ear.
From what the guys reported back to me, they took the boat up to Grand Haven to get some lunch and ice cream. Then they went out to the big lake and did some swimming and each of the boys took turns being "The Captain" and driving before returning to Holland that evening. This was a little strange for me because I had to experience the whole thing thru the pictures but it sure looks like they all had a wonderful time. I know that Jamahl will never forget the day and the memories that he made will help carry him thru some of the rough times that our family lives through. A huge thanks to the "Team Craig" family! Words will never express our gratitude at how you lifted the spirit of a wonderful little boy and his Daddy. It was not just for that afternoon, it will last for a lifetime!

Big Brother Hero Day

So, do you remember the Make-A-Wish bicycle tour and how Keyan had a group of people that rode the 300 miles in her name? The team that rode for her was named "Team Craig". Well, after the Hero's Hurrah, the leader of the team and I have kept in contact over email. She rides in honor of her son who also went to Disney with MAW 20 years ago. She has walked my path and we had an instant bond. Anyhow, her family has decided to honor Jamahl in a special "Big Brother Hero Day". We have been working out the details with her but Jamahl hasn't known anything about it. I told him yesterday that a package would be arriving for him today and so his curiosity was very piqued.

We arrived home from a very busy day and he saw a large package at the door and said disappointedly, "My package must not have come, I only see a box of Keyan's medical supplies." However, when I had him look at the address he was shocked to see it was for him! I will let the pictures tell the rest but it was so amazing to see his face as he was realizing this was all special things to celebrate a special day for HIM. He even told my dad, "this is all for me, from the team that rode at the MAW thing...I know poppy, you think that you heard me wrong, but it is really for me, not Keyan!" He will be "Captain of the Ship" for the day on this family's yacht. It will be an all boys day just for him. He is so thrilled and can't wait for this weekend.

I can't even begin to express our gratitude to Team Craig for thinking of Jamahl and realizing the important role that he plays in our family. Only someone who has lived it can understand the stress he takes upon himself when Keyan is sick, or when Mommy is gone with Keyan to the hospital. It takes special people to see how his life is often put aside in order to meet the demands of Keyan and yet, he so graciously stands beside her loving more that anyone in this world. If only we all had a Jamahl to look after us! View the pictures and let yourself get caught up in his excitement. Don't forget to click on the slide show to read the captions!

Mommy had fun on the water slide!

Oh my goodness! We spent all day Saturday, Saturday night, and all day Sunday at the Double JJ Ranch this weekend. My brother, his wife, their new baby, my Mom and Dad, and all seven of us all stayed in this huge 4 bedroom suite and we had a blast! The ranch recently reopened after being closed down for over a year so we shared the place with 50 other people at the most! It was so much fun. I promise to post all of the pictures later, but I had to get this video up. This is Roo and I going down the outdoor water slide together. I decided to help us out at the bottom by slowing us down......watch and see what happens!

As you can tell, we had such a great time. I haven't laughed this hard in forever. It was good for my soul! I am sure that this is a video we will laugh at for a long time to come!

Wish-A-Mile bike tour

Don't forget to click on the slide show so that you can see it better!!



This past weekend, the Make-A-Wish foundation had an incredible fundraiser. Almost 900 bicyclists rode 300 miles over three days in order to raise enough money to grant 250 wishes in the state of Michigan. I don;t know about you, but I can't even imagine 20 miles on my bike yet alone 300! This fundraiser is the largest MAW fundraiser in the NATION! How cool is that...right here in Michigan.
Keyan was invited to be a "wish hero" which means that two teams rode in her name. They use her and her story for inspiration while training and fundraising. So, we all packed up early Sunday morning and drove to the Chelsea Fairgrounds in order to meet these amazing people at the finish line. The event on Sunday is called the "Hero's Hurrah" and of course it was amazing. There was so much for the kids to do. We took part in balloon animals, face painting, clowns, crafts, amazing food, CANDY, cheering on the riders, dancing with radio Disney, big bouncy playhouses, games, prizes, some shopping for the moms :), and a lot more that I can't remember. Beyond all of that though was meeting the other families. For us this was one of the most special parts of the day.
As our girls were playing the candy walk gaming, winning way more candy than they would ever eat, I joined in to help another little girls walk in the right direction. When I looked down at her smiling face, I could not believe my eyes...she had a trach! It is so rare for us to see another child with a trach that it always catches me by surprise. I immediately sought out her mom and began to strike up conversation. We had an instant connection because we are both walking down the same path. Emma was her name and she is a twin. She is one month younger than our girls, she had the same exact little legs and arms that Keyan has, she even has the same scars on her back and tummy from similar surgeries! It was incredible! We started talking more with her parents to find out that she has yet to go on her wish trip to Disney but that her wish is to swim with Ariel...isn't that ironic, Keyan wished to sing with Ariel! We very quickly exchanged stories, all talking at the same time, when all of a sudden, Emma's Mom asked me what we are doing about school. Within moments, we were both crying and sharing the grief over the fact that there just isn't a good option for our girls. I am crying right now typing this because as Keyan's Mom, I feel so alone sometimes in our journey. I feel so overwhelmed by the always having to take the rode less traveled. I stood looking in the mothers eyes, and I knew her heart and better yet, I know that she knew mine. The struggles, the joys, the disappointments, and the courage. To me, this is what Make-A-Wish is all about. I have said it before, but I must say it again...they give us the opportunity to feel normal for just a moment in time and that changes me for the better.
The other highlight of the day was meeting our two teams of riders. What an amazing gift they give to all of us. They ride 300 miles over the course of three days and they meet us with huge smiles! One of Keyan's teams was made up partially of a family who 20 years ago had been to Disney with MAW and one of there children. We too had an instant connection of the heart for having walked the same paths. The one guy, talked right to Jamahl about being the sibling and going on that trip. That made Jamahl feel so special. What an honor if was to meet these 6 people, who because of their endurance and perseverance, 250 more families will be touched and blessed by Make-A-Wish. I will never be able to thank them enough. Wow...other life changing event! I guess God knows right when I need the pick-me-up because it is always perfect timing!

Renewing our vows

10 years ago last week, Paul and I became husband and wife. On that incredible evening, as we were overlooking Muskegon lake, we vowed to recommit ourselves to each other every five years. So far we have kept ALL of the vows, including that one! We had a small ceremony in our front yard with about 50 people in attendance. The kids of course played an intricate role in the whole thing and my Dad oversaw the ceremony and pronounced us husband and wife again. It was an amazing day. I won't speak for Paul, but for me I believe this time around was more meaningful that when we originally were married. Ten years ago we were young, naive, and thought we had life all figured out. We had a plan about working, how many kids we would have, what kind of house we would build, and all of this was on a pretty stringent time line. HA!!!! Has God ever taught us a thing or two! I felt is was so amazing to now say, after going through so much, that we would knowingly do it all over again and choose each other. That was a very powerful message to my heart. We had a wonderful time surrounded by family and friends and are looking forward to what the next five years may bring! We couldn't break tradition ...we were all dressed in red, white and blue.

The kids all held a different type of flower, and we joined them all together to make a beautiful bouquet, symbolizing that all of us are beautiful as individuals but that together we make up quite a fantastic family.

Sharing the vows that we wrote for each other

"You may now kiss your bride!" Do those words ever get old?

Jamahl's diving debut

Check this out!!!!! I signed Jamahl up for a 4 day diving clinic. In my mind, he was going to learn how to dive from the side of the pool and by the end of the clinic maybe dive off of the diving board. Boy was I wrong!!! He is learning how to technical dive...ya know, like the olympics! For a child that has absolutly ZERO thrill seeking cells in his body, I was not sure how he would do but he LOVES it! He listnes to the instructions, concentrates very hard, and than tries to get his body to do what his brain wants it to. It is amazing. He has learned a back dive, a half front tuck, a back half twist, just to name a few. We are all so proud of him. He goes for three days this week too so Lord only knows what he will be doing when the week is done. This is his fourth time on the high dive and if you listen, you can hear the instructor ask him if he is going to jump or try to dive....I could not believe my ears!

Why we have a dog

So many people have asked us why in the world we would add a dog to our crazy household. There are people who thought that we were downright crazy getting a dog. This picture sums it all up. Our kids LOVE Maddie, sometimes to the point where they would love the fur right off of her! To many we may seem insane, and in fact we probably are, but moments like this are priceless!

We are in isolation!

I have not had too much to blog because we have been doing NOTHING! Since last Monday evening, the girls have been in isolation. We have gone no where except the doctor or the ER , they stayed in their pajamas, no one has eaten much of anything, and Mommy is barely keeping her sanity. After several opinions, the conclusion is that the girls all have a virial infection. It could be several different ones, it doesn't really matter, because no matter what you call it, they have to stay away from people until their fever breaks. McKEnzy started with some itchy spots on her arm, than her hands, and than onto her face, running a high fever the whole time. It was insane. The other girls have had milder cases but none the less it has been a long week! McKenzy has it the worst and she is on steroids for the inflamation (that makes her dispotion SO great!). This picture does not do it justice at all. I would look at her face and just about start crying it was so bad. The good news is that as of today, all four girls have been fever free for 24 hours so baring any unforseen circumstances, we should be able to go to our swimming lessons that start on Monday! Hopefully, this means I will have something to blog about in the near future.

A real Ho-Down

Jamahl's class has been working on a square dance for the last three months. Wednesday night was the big performance at the Celebration of Learning. He was so excited! They had to be in the gym at 6:30 sharp and he thought for sure that we need to leave no later than 5:30! Keep in mind we live 5 minutes form the school! There was one bad part though and that was the required blue jeans to dance in. Jamahl HATES jeans. He doesn't even own a pair...he only wears wind pants. Cowboys however, do not wear wind pants so jeans it was, although he called them "boo" jeans! We were all so proud of him, especially when he told us what a big responsibility he had as the "lead couple". Oh, he takes things so serious. He did fantastic...and even better, he had a great time! Enjoy!

Ballet recital

Oh what an exciting weekend this has been! The girls have been taking ballet since September and this weekend was the end of the year recital. They have been working so hard and this was the culmination. The excitement level was very high as we did hair and got dresses for dress recital Friday night. This is the first time the girls have performed in anything or been on a stage. The recital was held in a venue that seats about 1000 people and it was just about full! Saturday morning, Grammie and Auntie Roo started doing hair early and mommy was in charge of getting everyone dressed. It was quite the undertaking but it was worth every second. When Abby first woke up on Saturday she shrugged her shoulder and said, "Well, it is just another day on the stage!" I think we will have a lot of performances to attend in the future. The girls had a very large fan club at the recital and it was so cute to watch them on stage. They were on the middle of performing when all of a sudden they started to recognize people in the crowd. Then of course they started waving and smiling at us all. I think that their class stole the show! It was a wonderful weekend to celebrate all of their accomplishments and how far they have come. I just could not get over that we have little girls old enough to be in their first dance recital. It seems like just yesterday that we were struggling to feed them. The scary part is that I know it will only be a short time before we are all gathering to do hair for the prom. Where does time go?

Sidney waiting backstage for their group to be called.

Keyan could not wait to be on the stage

McKenzy had the backstage jitters and could hardly sit still

The Prima Ballerina, Abagayle, was thrilled to be performing!

Their dresses were made for twirling!

I love this picture...all smiles, twirls, and jumps!

Ok, I have to admit that this picture is my favorite. She looks so great!

And than there is Abby and her gracefulness. Notice her hands pointed? She loves it!

It is tradition to present a dancer with flowers after she performs...as you can see, the girls were showered with tradition!

Our three days in Disney

I have SO much to catch up on so I guess I will just plow ahead..... The last week in April, right before Maddy came to join our home, Paul and I got a very much needed quick getaway to Disney. It has been four years since we have been away longer than 20 hours so we grabbed the opportunity and did not look back! My Mom and Dad took care of the kids and sent us off on our way. Mom thought that she could handle two nights and three days so when I booked our flights, I took advantage of every hour possible. We left our house Monday morning at 4:00am and returned in the wee hours of Thursday morning. Of course, wouldn't you know that we lost power the night before we left so we had to finish packing by flashlight and I had to repack my capris that I was going to wear due to the hairy legs that did not get shaved because we could not take a shower without power! We were so worried, but luckily, as we arrived at the airport, we called home to find out that the power had come back on. One less thing to worry about! We basically had most of Monday, all day Tuesday, and most of Wednesday. It was amazing. Many of you are laughing right now at the fact that we got to get away from the kids and we choose to go to Disney....well, those of you who know me well are not surprised at all but there we actually a lot of practical reasons to choose "the greatest place on earth". Where else can you go that you don't have to rent a car, you have hundreds of restaurants available, shopping galore, bars, great hotels, and stay on an "African reserve"? We decided to splurge and stay at the Animal Kingdom Lodge and it was worth every cent. I cried every time we saw the giraffes because it has been my dream to stay at this particular resort but I never in my wildest imagination thought I would ever get to do it. We stayed busy during the days and ended both nights relaxing in the hot tub. It was so great to have time with just each other in such a magical place. I won't bore you with the details, but we had a fantastic time! :) It came to an end very quickly but we were able to come back recharged and reconnected. There is nothing better! Thanks MOM!!!!

We have added to our family!

I know that some of you are waiting for pictures of our adults only trip to Disney and they will be coming...but the newest member of our family takes precedence. We are happy to announce the arrival of Madeline Liberty Hogan....we call her Maddy! She was born on February 23, 2009 so she is a little over 8 weeks old and weighs almost three pounds.. She was born in Beaver City, Nebraska and flew to us on an airplane yesterday. The poor little things left her house before midnight Thursday night and we picked her up a little after 1pm on Friday. We are so happy to have her here. The excitement level is very high and she is being loved enough for four puppies!

A busy Easter

We woke up Easter morning to the sound of Jamahl reading the note from the Eater Bunny to his sisters. I jumped out of bed to grab the camcorder, and I don't think that I sat down for the rest of the day. First the kids looked for their eggs inside. Jamahl had camouflage ones, Mckenzy had Hello Kitty ones, Keyan had Elmo eggs, Sidney hunted Spiderman eggs, and Abagayle looked for princess ones. They have been looking forward to the egg hunt since last year. After all the eggs had been found we had a big breakfast with chocolate bunnies for dessert! You gotta love the Easter candy!

Once breakfast was cleaned up and everyone was dressed, we headed outside for another egg hunt. This time it was a free for all and they were squealing with excitement when they would spot an egg. It was so much fun. Once all of the eggs had been found, we led them to the barn where their new bikes were waiting. No, we do not usually get this extravagant with Easter but the bikes were on sale this week, so we thought we might as well get the expense of it all over with! The kids were thrilled with the bikes. Jamahl was immediately ready to hop on and try to learn how to ride without training wheels. The girls were a little disgusted that their bikes were not put together. The day was the nicest that we have had since St. Patrick's day so the adults took turns helping Jamahl and Paul got busy building the other bikes. It was so cute to watch the girls anxiously "helping" Daddy get their bike together. By the end of the afternoon, Abby was pretty confident, McKenzy was coming right along with a little help getting started and turning, and Sidney was still figuring out how to peddle. Jamahl is working on his balance and Keyan was so happy for everyone she could hardly stand it....don't forget she got her ambike a couple months ago.
Uncle Jeremy and Auntie Roo arrived in time for dinner and than it was back outside to show them the bikes. We ended the day with ice cream at Captain Sundaes. It was a fantastic family day. When Paul and I finally fell into our beds that night, he said, "That was a fun day. It was great to watch the kids have so much fun, but I could not keep up to this pace all the time!" Who are you kidding honey.....we live this pace constantly!!! We hope that you had a great Easter!

Coco Key-Chicago

Spring break was so great!!!! It was so nice to be without a schedule and focus on doing fun things. We limited Keyan's therapy sessions and tried to have a week off from our calendar. My Mom took Jamahl to Chicago for two nights to visit the Lego Discovery center and do some "boy" things. The hotel that they stayed in had an huge indoor water park so Paul and I packed the girls up for a day trip to enjoy the water fun. We had a blast spending the day together as a family and away from the responsibilities of home. We rented our own personal cabana so we had a place to relax, warm up, and eat without fighting the crowds. It was just what we needed. We debated about taking Keyan but decided to take a leap of faith and let her have the experience too. It is always a struggle knowing what to do but I totally know that we did the right thing. All she talks about is how much fun she had at the water park. It is so much fun to see the kids' eyes light up when they are talking about the slides and splashing, and the big bucket of water dumping all over Grammie!!! We did not have time to take too many photos but I hope you can see the fun in their faces.

A family outing

So this post is a little out of order, but the weekend before Keyan went back to the hospital, we took the kids to see "Disney on Ice". We had such a good time. As you can see, the kids dressed in their Disney finest and were very excited. Although, when I first told the girls that I had bought tickets and we were going, Sidney and McKenzy both started crying. When I asked them why they were upset, McKenzy said, "but I don't like ice skating!" and Sidney very seriously said, "I am no good at ice skating." So, after I quickly explained that we would just be watching a show, everyone was ready to go! We made it to Grand Rapids, thru the parking garage, walked up the block to the arena, and made it to our seats without losing anybody!!! I was feeling very happy. Jamahl and I went and got snacks for everyone and the show began. The theme of the show was "100 years of Magic" so we saw just about all of the more popular Disney characters and the music and skating were wonderful. At one point, all of the princesses were on the ice, there was Ariel, Cinderella, Snow White, Pocahontas, and Jasmine.....but Aurora!! Aurora is Mckenzy's favorite and it did not take her long to realize that her princess was missing. Just as she was about to melt down crying, Jamahl just said matter of factly that Aurora must have been sick, maybe she had the flu! Abby told her that Aurora must have stayed in Disney World, and Sidney just shrugged her shoulders, and said that Aurora must not be able to skate! McKenzy thought about all of the wisdom of her siblings and said, "OK, maybe next time!" Thank goodness for the intuition of kids! When I was buying the tickets, I was very concerned that Keyan would not be able to see. I was unable to get seats right up front so I knew that we were just going to have to deal with what we could get. We were about 20 rows form the floor, the arena was dark, the spotlights were on the ice and all over in the seats, kids had light-up, spinning things....needless to say, it was a lot for her to take in. As the show started, I noticed that she was curled into the back of her seat, and I thought that she was crying. I picked her up to comfort her and saw that she was grinning ear to ear. She couldn't really see the characters on the ice and the rest of the atmosphere was overwhelming, so she shut her eyes, and enjoyed the show totally with her ears. She clapped her little heart out and sang along with most of the songs. Her smile never left her face. It was amazing!She knew just how to adapt n order to enjoy it the most. It made me realize that I could do all the worry in the world, but she knows how to deal with some of her limitations. It was amazing to watch her overcome her"difference" and still totally get as much as any of us out of the experience. She is such a cool little girl! Needless to say, we had a wonderful time spending time together as a family.

Home again...with another tube!

Our poor Keyan has had such a hard winter. Many of you know that she has been in and out of the hospital since the middle of December, basically spending just about half of the winter in the hospital. She was admitted last week for a severe kidney infection as well as an infection in her lungs. After spending 8 days there, it was determined that she needed a total of 14 days worth of IV antibiotics. So, in order for her to come home the doctors inserted a PICC line which is basically a long IV that is inserted in her arm and threaded thru her chest, into the opening of her heart. This fancy tube lets us give the medicine at home, so she did not have to stay inpatient the entire time. The PICC line will stay in until the end of next week and than our nurses will be able to pull it out!!! We are very excited to have her home, but there is a large concern about her getting another infection in the line. Please pray that this does not happen!!! Here she is showing off her latest "badge of courage".

Keyan was so very happy to be at home and she just keeps playing and playing. Tonight after dinner she decided to have ice cream for dessert. She loved every bit of it, although most of it made it all over her face rather than her tummy! Thanks for the prayers and please keep them coming.

The Hogan Infirmary

We have missed so much this past week....Abagayle's coming home day, the anniversary of Keyan getting her trach, the girls' actual due date, and I am sure several other things but EVERYONE has been sick! For an entire week, our living room has been sick central. The poor babes have no energy. I have never seen anything like it. They don't play at all, they just sleep and occasionally watch a movie. Keyan was in the hospital for three days and actually probably brought her home a little sooner than we should have but with the help of our great nurses, we have been able to keep her home so far. The girls have worn nothing but pajamas but an entire week! Everyone is finally rounding the bend, and we hope to catch up on Abby's day later this week. It is so hard to have sick kids!!!!

72 Valentines and counting...

Ok, Valentines Day used to be my favorite holiday...but it is no longer. As a matter of fact, I do believe it has become my least liked holiday. Why, well because I just completed filling out 72 valentines cards for the girls to take to school. They in turn brought at least 72 cards home with them also. Oh, and can I just say that I would kill for the time to make beautiful heart shaped treats for the entire class. The girls received so many cute things...I felt horrible with their store bought Wall-e, Mickey Mouse, Princesses, and Spiderman cards. As if I need more mommy guilt! Never fear though, Jamahl and I did make homemade paper airplanes for him to take to school tomorrow. For some reason last year I decided to do home made dinosaur ones with him and so he was not about to just buy the ones from the store. What was I thinking????? I guess after finishing with Jamahl's class I am up to 96! At least Jamahl could write the names on them by himself! Happy Valentine's Day! We love you all.

It is Sidney's Day!

Time is a thing that I do not have enough of!!! Life has been crazy but we did manage to celebrate Sidney's coming home day today. She got to have a frosted cookie after breakfast, which although the frosting was pink, and she much prefers red, she decided she would eat it anyhow! We ran a hundred errands this afternoon which I normally do not attempt to do on my own with the girls but things actually went fairly well. Could we really be making advancements on this front?
Four years ago, Sidney left the NICU after a bumpy 80 day stay. She had numerous infections that made her swell up really big and she had some eye problems. She came home four days after McKenzy and they were so happy to be together (that is them in the swing above). The last year has been full of changes for Sidney. She is growing up so quick. In November, she got Spiderman red glasses and that seems to really help her out. She looks so cute in them and will often comment on how she can see better.

We had spaghetti for dinner tonight and that is Sidney's favorite! She also loves to wear costumes! When I looked back over the pictures that I had taken of the day I think I counted four different costumes!

She choose Mint Chocolate Chip Ice Cream for her treat. Too bad Poppie is in Mexico, he is her ice cream buddy! Auntie Roo and Uncle Jay came down for dinner and helped celebrate Sidney's day. Sidney is a sweet girl that has a very stubborn side to her! She is always ready to lend a hand in the kitchen and loves to just hang out by Mommy and Daddy. She idolizes Jamahl and Spiderman and is always looking to impress her big brother. Sidney, you are one determined little girl and that will make people pay attention! I know someday you are actually going to fly, so keep up the trying! Your role as the observer is a very important one and your seriousness will serve you well. Your sweet little smile always lights up my heart and your twisty kisses are great. Always keep your individual spirit...you never know where it may lead. We love you and are so proud of you.