WAM 2011

If you have spent much time on my blog, you will know that the Make-A-Wish foundation is very dear to my heart.  You will also know how much the Wish-A-Mile bike ride means to us (and if not…see July of the last two years).  This year however, WAM was a whole new experience because Paul joined Team Craig and rode the 300 miles.  It was AMAZING!!!  He left Thursday afternoon to get up to the starting point.  The ride was Friday, Saturday, and Sunday with the Hero’s Hurrah festivities at the finish line.  Keyan has been a wish hero for the past three years, but to place a medal around her Daddy’s neck was priceless.

WAM 2011 VIEW SLIDE SHOW DOWNLOAD ALL

The kids and I were able to be at the finish line for the first day and stayed to have dinner with Paul and the team.  It was so great to see Paul hanging out with friends and having so much fun.  The team has adopted Paul as part of the family and it has been so good for him.  He has been training since January and actually on his bike since April.  Paul doesn’t do anything halfway and he was VERY physically and mentally ready for this ride.  His heart was in it because he knows the value of the wishes that are granted. 300 miles in 3 days raised $1.8 million which will grant 240+ wishes!  I was such a proud wife and so thrilled to have our family be participating at another level.

The heat really got to all of us but the girls still got their faces and arms painted, played a few games, and loved the therapy dogs that were visiting.  SO much so that at one point, I looked up and Abby was holding the leash of a very pretty golden retriever who must have only been in training because while we were in charge of her, she was not a very good listener!  She was dragging Abby all over the place.  It was pretty funny.  Some of the Star Wars characters made a short appearance much to Keyan’s dismay…she ran smack dab into Chewbacca and went into complete hysterics…Jamahl would have been so devastated to see his sister behave this way! We just quickly moved Keyan out of the way and everything went back to being good.

The finish line on the final day is all gravel and actually very dangerous to be riding your bike on.  This year, the entire team stopped on the road and walked their bikes in. I had tears falling freely as Jeremy took Paul’s bike and Paul took Keyan in her wheelchair the whole team plus Keyan crossed the finish line on foot while Keyan was on wheels.  Isn’t that what it is all about?  It is about making dreams come true…it is about making the impossible possible, and it is about giving these kids memories that get them through the darkest of days.  It is not about getting to the finish, it is about the journey that gets you there.  Keyan has had quite the journey in her short 6 and a half years, but with a village surrounding her, she continues to love life and inspire up all to demand more of ourselves.

Team Craig is a blessing straight from God.  It is another one of those situations where God’s orchestration is SO evident.   To think that three years ago we met them all when Keyan was first their wish hero and Debbie and I exchanged emails…and the rest is history.  God brought them into our lives for very specific reasons and not many people would ever understand.  This family is a literal life line for ours and that can only be a God thing!

Saturday was AMAZING

The day started early and continued to be a whirlwind but every minute of it was well worth the lack of my normal sleeping in on Saturday morning! Paul and I left the house at 6:10am to get him to his first official organized bike ride.  He has been training for a 300 mile ride for the Make-a-Wish foundation that takes place in two weeks so this was a great precursor to all those miles.  He rode in the Holland 100, but because Jamahl had an important swim meet in the afternoon, he choose to ride the 67 mile course. 

He didn’t really need me to tag along at the start but I wanted to be along for the photo opportunity and to document his first ride.  As you can see, the sun was just starting to peek over the horizon. 

Not only was this Paul’s first ride, but it was also his first time to ride with other people!  He couldn’t have a better group to ride with…our friends The George’s!  This is the founding family of Team Craig (the team that has adopted Paul into their MAW team!) What AMAZING people…we are so honored to have them in our lives.  They lend us tremendous support as well as lots of good times, laughs, and memories! 

I have to laugh a little at this picture because I have a very irrational fear of Paul being hurt while riding his bike.  I know he will be alright, but it is just something that haunts me!  The George’s all promised they would take good care of him, and even before they took off, they inadvertently were surrounding him!  What a cool thing!

Some last minute details, and they were off.  I didn’t hear from Paul until around 12:30 to know that he had finished the ride, felt great, had an incredible time, and LOVED riding with friends!  I would have loved to be at the end of the route to congratulate him, but I needed to get Jamahl to his swim meet.

Jamahl has been working toward getting a State Time so that he could swim at the state meet.  Saturday was his last chance.  He needed to swim his 50 meter freestyle in 37.49 seconds and at the last meet, he swam it is 37.98…just .5 away!  So, this weekend was his final chance.  As it turned out, he was unable to get into that event at the meet and he was devastated.  After speaking with the coach, we found out that we had a chance to do a time trial Saturday morning before the meet. The coach called me that morning to confirm that yes indeed, they would be offering a time trial and he was signed up!  This was his last and final chance.  We had really talked to him about whether or not he wanted to try for it.  We let him know that by no means did he need to feel pressure from us. If he wanted to be done for the season, we could do that.  He has had a great summer season in that he has consistently taken time off of his events and he has expanded his repertoire of what he swims to include all four strokes, longer races, and even an IM race. He had tons to be proud of!  However, he decided that he wanted to give it one last shot, so away we went!

For the first time, I could see that he was nervous.  On our way into the pool, he was walking slower and slower.  I put my arm around him and told him that this time trial really didn’t matter at all.  His first job, was to make sure he was having fun, and his second job was to remember that no one cared at all if he made the time.  “Just go out there, use your nerves to pull your strength up from your toes, and swim your heart out!”  He had a chance to warm up, and then when the morning session had finished, they announced time trials would begin.  It was a very eerie feeling to watch the pool and stands empty and see your nine year old and one other boy standing waiting for the officials to to blow the whistle.  I literally thought that I was going to throw up, I was so nervous for him. Doing a time trial is a new experience for him and he was pacing around his starting block.  Before I knew what was happening, the whistle blew, he took his mark, and the starting sound sounded.  Away he went.  It felt like the longest 30 some seconds!  He was nearing the flags and I ventured a peak at the clock…30 seconds.  I knew he would either make it, or just miss it.  I didn’t look again until his hands touched the pad.  I took a quick breath and let my eyes go to the clock…36.83!  HE DID IT!!!!  I was screaming, crying, and still trying not to get sick to my stomach.  He was ecstatic as the reality of what had happened sunk in.  It was the coolest thing to watch.  We are so proud of him and the hard work he has put in to make it this far.  He couldn’t wait to hug Grammy and Poppy and call Daddy. He told us later that for the rest of the afternoon meet, he went around giving random people high fives!  His enthusiasm was contagious!  So, for now, we have two more weeks of practice before the state meet at Eastern Michigan University.  And yes, if you didn’t catch that, both  of my favorite boys have huge events in two weekends.  The State meet is the same weekend as Paul’s Make-A-Wish bike ride.  UNBELIEVABLE!!!!   Just another example of our crazy life!

It’s here!!!

Today was such an exciting day.  We finally got to pick up one of Keyan’s bikes!  She has been waiting and waiting for one of them to arrive and we got word that the one that she will ride independently is on back order until later this month.  So, when we got the message that we could pick it up, we rearranged the day’s schedule and she and I drove to get it.  I was so afraid that we would not be able to fit it in the van (it is almost eigth feet long!) and knew she would be devastated if we had to come home without the bike! The man that took the bike to refurbish it drove from Illinois to bring her the bike and fit it to her.  He had done everything perfectly and the only adjustment was to lower my seat!

 

Our morning started with very intense thunderstorms and more than once I found Keyan with her nose pressed to the window asking me how we were going to go on a bike ride if it was raining.  Luckily, by the time we got home, Paul got home, and everyone was ready, the weather was perfect to go on our very first family bike ride!  Please don’t misunderstand, riding bikes with three other six year old, a nine year old, and a Daddy who is training to ride 300 miles in two weeks was NOT a walk in the park…we only went just over half of a mile but that short ride included three falls, some tears, a lot of motivational speeches, and a lot of patience.  But, we were out there….all seven of us, with a grin on Keyan’s face that made it all worth it.

I attempted to thank the lady from Mary Free Bed and the gentleman that made all of the custom repairs but I knew I would never be able to adequately explain the joy that this was going to bring to not only our precious little girl, but our entire family.  It was just another reminder of how blessed we are.

A first

It started with a a question that for most couples isn’t that big of a deal.  “Why don’t you take Thursday and Friday off?”, I asked Paul on the Wednesday before the 4th of July.  “Do we dare take time for an actual day off instead of for hospitalizations, appointments, or surgeries?”  I can count on one hand the number of times Paul has taken time off “just because” instead of using his vacation time for medical stuff.  While on the phone with him, we calculated hours out…how many he has left for the year, how many we know we will need for upcoming Cinci trips, ect.  It would be a little risky (What if Keyan takes a turn for the worse), but we agreed to take the chance.  He called me back moments later and said it was official, he would be on vacation for 5 days!  My brain immediately went into overdrive…what would we do?????

I turned to facebook for suggestions for day trips and I was up at 3am scouring the internet for something special to do with the kids that would also accommodate our unique needs.  Anything that would require a hotel stay could not be considered due to all of Keyan’s equipment.  Anything outside would not work because of the heat, and I needed something that would work for all five kids….and than a plan came to mind.  It required some bravery, the help of some very generous friends, a lot of coordination, and a whole lot of spontaneity!  (which can be VERY difficult when it comes to our life)  We would visit the Indianapolis Children’s Museum!  We have friends that live in Indianapolis who just happened to be out of town so I called them and asked if they would mind us staying at their house and they immediately said “yes.”  All I had left to do was convince Paul, and that was a big job! 

We discussed it, we argued civilly, and we fought about it until he finally agreed to give it a try.  What was he so worried about?  If you didn’t read between the lines…I wanted to do it without taking a nurse.  It would be the first two nights in 6 years that a nurse would not take care of Keyan.  I had contemplated it all for awhile but I just needed to get him up to speed and on board!  It was something that I desperately needed.  I needed it to be just the seven of us.  I needed to know that Paul and I could do it.  I needed a break.  I love our nurses, and would not trade the relief that they give us for anything.  They have saved Keyan more than once and without them, we would get NO sleep and Keyan’s health would be at risk.  However, for the last six and a half years, we have had someone else in our house 50% of the time.  I wouldn’t change it for the world but I just needed some time with my family.  No nurses schedule, no nurses opinion, no giving and taking report to a nurse….just a family on a quick get away.  I knew it sounded crazy, but with the use of a house, and an area that has a great children’s hospital, I thought we might be able to pull it off.  I knew we wouldn’t get much rest, I knew that it would add tremendously to our busyness, and I knew that it was taking a huge chance, but I also know that while Keyan is having good days, we have to take every opportunity to embrace life.  And that is just what we did!

I had a friend here Friday morning who packed the other kids stuff while Paul and I focused on getting everything ready that Keyan needed.  We literally packed up our “mini hospital at home”, checked and rechecked our lists, and went thru every worst-case scenario.  I had to laugh when my friend yelled, “how many pair of panties do you want packed for the girls?”  My response, “Well, each girl needs two pair plus we had better bring two extras so for two nights away, we need 10 pairs of panties!!!!” We both just stood and laughed.  We never could have made it out the door by 12:30 had she not been here to help.  Everything fell into place….oxygen was delivered by noon, TPN (Keyan’s IV nutrition) was here by 12:15, I was able to cancel the nurses, we had a house to stay in, my parents could feed the dog and all of the crayfish (yes, we still have lots and lots of crayfish!), and we were off!  I was thrilled to be trying this trip and cried as we pulled out of town!

I won’t bore you with every detail of our trip.  We ate at some fun places, we played at the museum, we did a little shopping, we read books on the back deck under the stars, we laughed, we made very important memories…and we all survived!  Paul and I were exhausted, but it was worth it.  We had pulled off a trip that we previously had thought was impossible.  God had laid it all out, took care of the details and luckily, we were brave enough to take the leap…we could only have done it together…it was beautiful.  I will say though, that I don’t want to be the nurse again anytime soon!

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Triathlon…Who would have thought?

Today was an exciting day in our household.  Jamahl and Sidney did their first triathlon.  It seemed like a crazy idea, but it was super fun!  Jamahl has been interested in doing in for a few months now so when I was registering him, I asked Sidney if she wanted to give it a try and she was ALL over that idea!  McKenzy and Abby were very quick to say that they would just watch and God bless Keyan, she would have totally done it if her little body would allow her to.  Anyways, early this morning, Paul took the two athletes and headed out to rack their bikes and get their transition areas all set!  The rest of us followed in short time to get good viewing areas. 

Sidney had to swim 25 yards, than bike .5 miles and finish by running .25 miles.  Jamahl’s age group swam 50 yards, biked a mile and ran a half mile.  That doesn’t sound too bad until you are doing it all one right after the other!  Sidney’s age group went first and she was just finishing when Jamahl started his swim.  Paul, my parents, and I all got quite a work-out ourselves running from one event to the other, keeping track of the other girls and running thru the camp pushing Keyan in her wheelchair…all while cheering the two kids on!  It was so much fun!

The course got a little confusing and was somewhat overwhelming to Sidney at one point so when she started to run, she looked straight ahead, saw this very long path ahead of her, looked to her right and decided that she would just duck under a few course markers and create her own short cut. It was so cute!  She later told Poppie that her run was kinda’ short, and she could have gone a lot further!  Out of the mouths of babes!  Jamahl of course got lots of comments on his flip turn in the pool and enjoyed every minute of all three events.  He was such a great big brother…helping Sidney stretch out, letting her tag along with he and his friends after the race, and telling her what a great job she did.

triathlon VIEW SLIDE SHOW DOWNLOAD ALL

**Don’t forget to view the entire slideshow by clicking above

The camp ground where the triathlon was held is beautiful, the weather was absolutely perfect, we spent the morning together as a family involved in a new activity, surrounded by friends and family…no matter that the times got all messed up, or it took forever to give out the ribbons…it doesn’t get any better than that!  Now if we can convince the other two girls to participate next year and figure out a way for Keyan to race too…it will be all good!

Playing Catch-up!

Oh my…it has been entirely way to long since I have blogged.  Life has been just as crazy as ever and time has gotten away from me.  So, without further ado…our life over the past 6 weeks!

Easter…We had a very busy Easter weekend with parties, egg hunts, coloring eggs and lots of great family time.  Our resident Easter Bunny hid 25 eggs inside our house and 105 eggs outside.  This outside hunt is fast becoming a favorite traditions as the entire family get involved.

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Family…One of our nephews played baseball here in Holland the following weekend and we got to spend some great time with their family. It is sort of sad that we live an hour away from each other and rarely get to hang out with them.  Busy schedules keep everyone occupied so we were excited to all have some free time. Their three boys and our five kids make up quite the crew!  We had a lot of fun and realized that all of our kids are old enough to actually get in a little adult conversation as well!  You can’t beat that!

 

                                                              

Cinco de Mayo…Having a child in the Spanish Immersion program at school makes it almost mandatory that you have a fiesta for Cinco de Mayo!  (Besides the fact that I need NO excuse to have Mexican food for dinner!)  We had great food and great times with friends and family.  Jamahl said the dinner prayer all in Spanish and I am pretty sure none of the adults had a dry eye…nor could most of them understand what he was saying!  Such a FUN night!

Fiesta! VIEW SLIDE SHOW DOWNLOAD ALL

Tulip Time…And I end this long update with pictures from this years Tulip Time festivities.  My mom and I worked our butts off making new costumes for the girls but it was so worth it to see them all dressed up.  We didn’t make it down town as much as we normally do, the week just seemed to get away from us but we still had a lot of fun frolicking through the tulips!  You might notice that we have no pictures of Jamahl in his costume.  He did wear it when he and I marched in the parade but after that it was a “no go.”  I knew it was going to be a long shot this year, but I am proud of myself for not getting to upset about it.  He is growing up faster than we are ready….but isn’t that true for all of them?

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SO, there you have it…our life during the last few weeks.  Jamahl’s swim season has started again, Keyan has been fighting a bacterial infection and a yeast infection in her lungs, we are in the fight of a lifetime with Medicaid, the school year is wrapping up, Paul is training for his 300 mile bike ride, and so much else that fills our days.  We are looking forward to warmer weather and some pool time!

"Bikes for the Rest of Us"-Our miracle story!

This is the event that we attended Saturday morning.  It was such a great experience.  I was very anxious about going and being able to find, and afford the right bike for Keyan.  A few years ago, she received an adapted bike from our local ambucs club, but in the last year, Keyan has lost a lot of her arm strength and some motor planning skills which made it too difficult to use her bike. So, off we went to get some better recommendations.  I literally was obsessing about going....I didn't want to get her hopes up, only to find that we could not provide her with a bike.  So, we all talked about how we were just going to look and see if we could find a new bike.

When we arrived at Mary Free Bed, the kids were all very excited to return to the place that Keyan had spent several weeks last summer.  They all know that MFB has done some great things for Keyan and it was great to see their appreciation and understanding at such a young age.  We were paired up with a therapist that knows Keyan quite well and also understands the different dynamics that Keyan embodies.  She immediately thought of checking out a tandem bike which would allow our family to actually ride bikes together...a dream that we had sort of set aside years ago!  Paul took her for a spin on the tandem bike, the company talked to us about how it could be modified, and than the dreaded money conversation came up....the bike, with it's modifications, rounded out around $7000.00.  HA!!!  Even with partial financial aide...that would not be happening.  So, as my mind began reeling with fundraising ideas, selling a kidney, ect...Our therapist said, "Wait, there is ONE tandem bike in the recycled bikes, let's race over there to take a look at that."

So, our whole crew made it across the parking lot, where the therapist had already asked for the ONE tandem bike to be held for us, to see if it could work.  It was in pretty rough shape, but before we knew it, a company from Illinois came over to see how it could be modified for Keyan, and if we could make it work.  Meanwhile, the therapist and I debated the pros and cons of the tandem bike....allowing her to be part of a family activity and giving us as a family some more freedom, but a tandem bike would not give her the Independence to ride in the cul-de-sac with her siblings.  Such decisions!  Our family headed over to the ambucs station where we explained her current level of functioning and they made some recommendations.  They got her on a bike, with the right seat, an adapted set of handle bars, a pulley system on the petals, and she was actually able to get around.  Jamahl helped her with the steering as I sat and wondered what in the world we were going to do.

Just this week, I was talking to another mom about how on a weekly basis,  Paul and I are making decisions for Keyan that will affect her for a long time...all parents do, but how was I going to choose between her Independence and the freedom a tandem bike would bring to our family?  I had tears in my eyes watching her working so hard at getting that bike to go with her siblings cheering her along.  I knew in my heart, we needed both of these bikes, but, "how do we go about that?"  As we talked with our therapist,the other volunteer that had been paired with us,and several people from the different associations that were present,  two different people said, "You really need both bike options."  They took the words right our of my heart...I didn't even know if that was possible, but I was so grateful that others around us had some to the same conclusion.

In the end, to make a really long story a little shorter, the company from Illinois will be able fix and modify the recycled tandem bike for under $1000.....WAY better than $7000! And I have the contact information to move forward with getting her the tricycle that she can do herself.  I was a little overwhelmed with the miracle that had taken place.  How is it that there was ONE tandem bike in the whole lot of recycled bikes?  How was it, that over 300 disabled kids and adults were helped yesterday, and we were able to fit Keyan for that ONE tandem bike?  How is it that we made the right connections to also be able to move in the direction of getting her her own bike as well?  Why in the world did I loose sleep over this event?  Where was my faith?  There are a lot of answers that could be given, but during our quiet car ride home, while all the kids were plugged into their ipods (thanks mom and dad!), I was reminded that we are so truly blessed.  God had his hand in every moment of our morning....as a matter of fact, God knew how it would turn out, before we even went.  What an incredible feeling to fall into that safety net and be reminded that He does indeed watch out for what we need.  It was amazing!

P.S.  I will do my best to keep you all updated as to the progress of our bikes!  It should be exciting!