God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with special needs doesn't take a special family, it makes a special family.

Tuesday, August 7, 2012

I haven't fallen off the face of the earth....but as the name of this blog suggests, life has been C.R.A.Z.Y.!!  It's been a while since things have been this busy and I'm ready for it to slow down!  As many of you know, I went back to work three weeks ago.  I've been praying for a long time for the right thing to come along, and the way things happened were definitely by the grace of God!  For now I'm working part time, three days a week, 3-11pm.  Which is exactly the schedule I wanted!  I'm still home in the morning to get Brenden to/from school, take Madelynn to gymnastics and some other classes she will be starting, but it still gets me out of the house and has helped save some of the sanity I have left!  The kids are still having a bit of a struggle some nights with me being gone at bedtime, but Jonathan is always the one to put them to bed, so thankfully it's not a babysitter! 

Yesterday, we reached a huge milestone!  After enduring 8 surgeries and over 50 nights in the hospital in his brief 4.5 years, yesterday marked the two year anniversary of his last operation!  While the feeling I get having to send Brenden into the OR will never fade, it does seem like it's been so long ago.  With SB there is always the chance of something sneaking out of the wood works, whether it be shunt failure, tethered cord, or something completely unexpected. So we don't take for granted the fact that we have had two years of good health. 

Ballet was an epic fail for Madelynn.  She was still probably a bit young, but she insisted so I signed her up.  And she just didn't like it.  After the last class, she said she wanted to gymnastics (again) and baseball.  I convinced her she's too young for baseball, so we agreed she could try gymnastics again.  This morning was her first class and much to my surprise, she loved it this time!!  She did EVERYTHING the teacher wanted them to do and is very excited to go back.  I must say, I hope she sticks with something other than Ballet.  I danced for 13 years so I know the environment....and the "dance moms," and I'd just rather her be into sports related activities.  We also toured a local preschool....another fail!!  She really needs to start interacting with other kids and getting away from me so I've been looking into two day a week preschools.  The first one had almost no structure and I was less than impressed with the teachers.  So the search continues, but there aren't many places around here that will take 2 year olds, even though she's potty trained.  She is very excited about her birthday party, even though I keep telling her it's not anytime soon.  I've already gotten most of it planned since she decided on a theme months ago, which should make for one stress-free mommy come November!!

Our calendar is pretty much booked from now through the end of September!  No free weekends!!  Luckily vacation is in October so at least I have that to look forward to!  Two weeks from today Brenden will be starting his last year of preschool so the anxiety of deciding where he will go for kindergarten will be setting in very soon I'm sure.  

Tuesday, July 3, 2012

It's no secret I've been slacking on the blog, but I surely didn't realize it had been over a month!  The last several weeks have been busy, crazy, fun, and everything in between.  We've taken a trip to Hershey Park, Dutch Wonderland, two trips to UVA, and next week will be heading to Philadelphia for another doctor's appointment.

The kids loved Hershey and Dutch Wonderland.  This was really the first time they experienced a theme park and they did great!  Dutch Wonderland was SO accommodating with Brenden which was such a relief.  The first ride they got on together had me on edge, but they did great and most importantly, they loved it!! 

Brenden had two uneventful trips to UVA, which we expected, but there's always that chance of something sneaking up so I'm never 100% confident until we get good news.  Next week is his appointment with ortho at Shriner's in Philly, which again, should be just a routine visit.  Brenden has been in seeing a new PT for the Summer and we LOVE her!!  She pushes him to his full potential (unlike the PT he has at school), which he needs.  He's working hard with his "sticks" (crutches) and though slow, is making progress.  His OT feels that he's ready to be discharged, which is bittersweet for me.  He truly has come a long way, but I'm not confident in what he receives in school, so I always feel like he needs the extra therapy.  Speaking of school, he starts Summer school next week.  He really doesn't "need" to go, but I persuaded his teacher into agreeing with me that it would be beneficial, so he was approved.  Though he won't be receiving any therapy, it will at least give him interaction with other kids and something to occupy him for at last 4 hours a day, if only for a few weeks. 

Madelynn is showing us the terrible 2's!!  She is quite the sweetheart, but if she doesn't get her way, watch out!!  She can go from sweet and innocent to a whiny drama queen in a flash!  If looks could kill, we would have been gone a long time ago!!  She starts Summer dance camp next week to see if she's ready for Ballet this Fall and she is VERY excited. 

As for me, I got a JOB!!!  I've mentioned before that I'm SOOOO ready to go back to work. God's hand was truly in this and I'm so thankful.  It's only part-time, and it's evening shift which is what I wanted.  I am so looking forward to time out of the house and adult interaction!  It should alleviate some of Jonathan's overtime, so he won't have to work 70+ hours a week.  I would still love to go back to school for Nursing, but time will tell if that's a reality or not.  My bachelor's degree in Business seems useless because I want nothing to do with the business world anymore, but I guess I have the piece of paper....

Today was the day for comments from ignorant people, but it deserves a blog post of its own, so I'll save it for next time!!

Thursday, May 31, 2012

I just realized it's been a while since I've updated, but didn't think it had been that long!  Brenden got out of school much earlier this year so our Summer is in full force!  Jonathan of course works.  Like every single day.  But the kids and I have been riding bikes, playing in the water, the sandbox, going to gymnastics, painting, and the list goes on.  He's really tough to keep entertained, but I'm doing my best! 

In the next few weeks he will be starting t-ball and swimming lessons!  I found a t-ball league last year that is designed for special needs kids, not in Berkeley County of course, but in Winchester.  It's for kids ages 4-18 and quite honestly, that's all I know!  He's excited, but I'm not really sure if he knows what it entails.  Every kid has to have an adult with them on the field at all  times, so Jonathan has taken off every Friday to be there.  (In case you didn't notice, I'm not much into sports!)  He will also be getting private swim lessons....I had a tough time finding any group lessons for 4 year olds that will allow parents to be involved, and for obvious reasons I think he will need a little extra help....not to mention that the schedules didn't work with ours....so private it is!

My sweet little princess will be starting *gasp* Ballet!  I really have been pushing gymnastics, but she is insistent on Ballet, though I'm not really sure why.  I've signed her up for a Summer dance camp just to make sure she's ready to start in the Fall, since she won't be quite 3 yet, so we'll see how she does.  For a while, we really thought she had a bit of a tomboy side, but that seems to have disappeared.  She wants to wear a dress.  Every day.  She makes sure her shoes and hair bow match her outfit (as if I would let them not match anyways!), and she asks for her fingers and toes to be painted a few times a week.  She's so funny lately but continues to develop quite the attitude.  She still wants to be a princess when she grows up and tells me that I can come live in her castle. 

They both made their performing debut a few weeks ago in church.  The kids club, Word of Life, was in charge of the service so each age group had a part.  Madelynn doesn't go to Gopher Buddies, because she's not old enough.  But that morning she somehow made her way up on stage with Brenden's group, and I think it's safe to say she was the star of the show.  She's usually quite shy around people, but I guess all it took was her own microphone.  She sang her little heart out!  (And yes, I shed a few tears!)  Brenden was his usual comedic self, and while he didn't do much singing, he answered all the questions about Jonah and the Whale.  Yep, I was a proud mama! 

On the medical front, Brenden is doing well!  We do have a few appointments coming up, but no surprises expected.  Next week we head to UVA for urology and I'm about 99.9% certain that will go as always, perfectly.  In July we head to Philadelphia for an appointment at Shriner's which will just be routine as well.  He has an evaluation with a new PT next week and I'm super excited for that.  It's no secret that I'm less than pleased with the PT he gets through the school system, so I'm looking forward to progress!  We continue to work with his forearm crutches and as I expected, it will take time, but last week for the first time, he stood for over a minute with them, without losing his balance.  He was excited, Madelynn was excited and clapping for him, and I of course was crying.  It seems like he's been at a stand still with gross motor, again, because of lack of a strong PT to push him, so this was exciting. 

I continue to pray for the "perfect" job to come my way....if there really is such a thing?!?  I'm really, really ready to go back to work, but of course need something with a schedule that will allow me to be home part of the day.  I really want something that I can work evenings or nights, so I'm limited in what I can do.  (Especially with a business degree!)

Enjoy your Summer!!

Saturday, May 12, 2012

Since January, I've been praying for a couple and their unborn baby.  The baby had some problems in-utero, and after being born 6 weeks early, they learned that things were much more serious than was evident during the prenancy.  Today, at 13 days old, Heaven gained a beautiful little angel.  When I heard this news, my heart broke.  The day before this young mom was to celebrate her very first Mother's Day, instead of celebrating, she was mourning the loss of her child. 
It was a reminder that I am never guaranteed tomorrow with my kids.  And that even in the midst of tantrums, whining, and driving me crazy, my kids mean everything to me.  My identity is as a mom.  I can't even remember life before kids, and I would never change it for the world.  It made me realize that the housework could wait and playing outside with the kids was more important this evening.
With Mother's Day only hours away, my heart is full of happiness.  Being a mom is the only thing I ever wanted growing up.  People always asked, "What do you want to be when you grow up," and in terms of a career I never had an answer (and still don't!).  But I did know that I wanted to be a mom.  While tomorrow will be a day of enjoying my babies, there is a part of my heart that is broken.
I've attempted to share this on more than one occassion, but I never could bring myself to click "Publish."   Part of me was ashamed, embarassed I think.  But after hearing a speaker share about her journey this morning at a Mother's Day Brunch, I realized that God's plan is perfect.  And that just as our journey with Spina Bifida has encouraged so many, sharing this may comfort someone else to know she's not alone. 
December 19 I found out I was pregnant.  Thinking back to my previous pregnancies, I remember how excited I was.  But this time, the excitement was clouded by worry and fear.  I can't explain why, but something just didn't seem right.  So much so that I didn't even tell Jonathan.  My first appointment was on our anniversary, which would have been at just over 7 weeks pregnant.  My plan was to tell him at dinner that night and show him the ultrasound pictures.  But God had a different plan.  The ultrasound showed that the pregnancy hadn't developed, but my body hadn't miscarried yet.  When I got in the car after my appointment I fell apart.  Even though I was prepared mentally for something to be wrong, I wasn't emotionally ready.  The doctor wanted to wait another week before scheduling surgery just to be sure, and that week was the worst 7 days of my life.  I cried.  I got angry.  I wanted to scream at the top of my lungs.  I wanted to curl up in bed and forget about what was happening.  But I couldn't.  I still had two beautiful, healthy kids to take care of.  
My two closest friends, my parents, and two other friends were the only ones that knew.  Both of my best friends had experienced recent pregnancy losses, so their support meant more than anything.  There are two girls that I've become friends with over the past few years, and for some reason, I felt compelled to share what I was going thru.  It was definitely a God thing, because they were able to share with me their experience losing a pregnancy.  One of them told me it was ok to grieve.  And I needed to hear that because I felt like it wasn't "allowed." I felt like I was expected to just go on with my life as if nothing had ever happened.  I didn't want people to know because I didn't want to hear, "Are you ok?"  Because my answer would have been yes, when inside I was broken. 
I never realized losing a pregnancy could be so hard.  But it is the worst feeling I have ever felt.  Something that was a part of me, was taken far too soon.  Going through that brought me to a place of happiness with what God has given me in my children.  I learned that the here and now is what truly matters and no moment with them should be taken for granted.  Even through the moments of frustration, I need to be thankful and realize just how blessed I already am.  I still think about the sweet little baby that woul have become part of our family, but my heart heals a little every day.  I know God's plan will continue to unfold, this was just one more bump on my journey. 

Sunday, April 29, 2012

Well we can cross two states off the list for places we've visited....Indiana and Kentucky!  We really liked Louisville....Jonathan is ready to move there!!  And Madelynn thought "Bentucky" was cool....she really didn't want to leave to come home!  We pulled out around 6am Thursday morning.  The kids switched off between us and my parents, which definitely helped keep them occupied, and us keep our sanity!  Our hotel was in Indiana, just about 10 minutes from Louisville, and we made it there around 6pm, I think?  Maybe a little later, I just know it was a long day, but the kids did really well!!  Madelynn thought it was super cool staying in a hotel....and she got to sleep in bed with me.  She's NEVER slept in bed with either of us, and I must say, I enjoyed our cuddle/pillow talk time before she fell asleep each night.  The only drawback...at bedtime tonight she of course wanted to sleep with Mommy.....something I don't allow because I really don't want it to become habit.  (Don't judge....kids in bed isn't for everyone!!)
Friday we headed to the race expo so I could pick up my race packet.  While standing in line waiting for the doors to open, I was interviewed by Fox News about why I was running. While I had no desire to be on camera, it was an opportunity to share why I was running.   After the Expo, we had the opportunity to watch a few minutes of a National Wheelchair Rugby game. While Brenden didn't like all the whistles blowing, he kept saying it was cool that they were playing sports in a wheelchair.   Friday evening I got to meet a very dear friend, Colleen....she was the first person I ever talked to after Brenden was born, and over the past 4 years has been a great source of information and comfort. 
I was nowhere near as nervous as I was for my past few races come race day.  I joined 18,000 other runners at the starting line at 7:15 Saturday morning......and it only took 17 minutes to cross the start line!!  The course was great!  Very easy, no hills!  Mile 8 brought us to Churchill Downs, where we got to run through the infield.  It was pretty awesome, I just wish we were in there longer!!  I really wanted to get through the race without losing time using the bathroom, but made the mistake of drinking before the race....I'm kicking myself for it now, but I've learned my lesson.  I lost almost 30 minutes waiting in line for a bathroom.  Two different times I stopped, but the lines were ridiculously long, so I continued on after waiting a few minutes, but got to the point where I HAD to go or I wouldn't survive the rest of the race, and that time I stood in line just over 20 minutes.  BIG mistake....when I got back on track my knee/leg were killing me, which only got worse.  This is the same problem I've had before, so I think I've decided I better get it checked out. 
I finally got to see the Jonathan, the kids, and my parents around mile 12.  I took a few minutes to stop and talk to them, which I think the kids enjoyed.  Brenden told me I was doing awesome, which was just what I needed for the last mile.   I later learned that another runner had stopped to talk to Brenden and thanked him for coming to cheer them on....he then told her she was doing awesome, which she said made her day, almost bringing her to tears.  He always finds a way to make people smile :)

After the finish, I made my way to the SBA's booth while I waited for everyone to find me.  Our team had 4 runners and one wheelchair racer, and everyone finished.  Our team raised over $10,000, and some still have donations coming in. One of Brenden's best buddies was in the hospital, so his parents were unable to run, but they were our team's two biggest fundraisers and are planning to run another race soon!
 I am so thankful to EVERYONE who helped me reach my goal.  All the donations, all the support for my fundraisers, all the goodies for our trip.....Thank you!!  And a big thanks to my parents for making the trip....though I'm pretty sure they need a vacation to recover!  Brenden can be exhausting....he N.E.V.E.R. stops.  I think he said "Hey, Grandma," at least a thousand times a day.  They helped keep the kids entertained on the car ride, during the race, and just in general. 
I've started to really enjoy running and training for a race keeps me motivated.  I'm not sure what my next goal will be, maybe a full later in the year, maybe just another half with a time goal.  Only 46 more states to run a race in!!  For now, I just need a break from fundraising!  With the NYC Marathon and Walk-n-Roll not that far behind me, and then everything for this race, I just need some time to be less busy and spend time doing stuff with the kids....especially since Brenden gets out of school in like 2 weeks!!!

Monday, April 23, 2012

Yikes!  It's been a while!!  Life has been crazy though, so that would explain it!!  This time next week I will have finished another half marathon!  We leave Thursday morning to head to Kentucky and I am excited beyond words.  I get to meet some amazing SB moms, who have also become friends, which is probably going to be the highlight of the trip for me.  I'm also excited that the kids will be there for the race....we're still mapping out the course, but I should get to see them at mile 3, mile 6, and then of course at the finish, but maybe one more time, too.  And of course my parents are going, too!!  The loooong drive is less than exciting, but I'm really hopeful that the kids cooperate!
We've had some major, major issues with our practically brand new van, which has caused me much anxiety.  It is still at the dealership (almost two weeks now)....long story short they can't get it fixed, so it's being reviewed by Chrysler to determine if they are just going to give us a new van.  I wouldn't be so irritated by this if it weren't for the timing, because, hello....we need this to drive to Kentucky!!  But after talking to the service manager they have agreed to get us a rental or give us one off the lot (we are currently driving their 10 yr old loaner w/ 136,000 miles) so that eases my mind a little, but I really want to put this behind us!!

Brenden started riding with Horses with Hearts again last week....this past week he rode with no belt!  Usually they have a belt w/ handles for the side walkers to hold on to, but he didn't want to put it on, so after some serious conversation, Brenden agreed to sit up tall, hold on, and ride like a big boy....and he did AWESOME!!!  Towards the end of the lesson he started to get a little tired, but I was super impressed.  We are so thankful for the wonderful volunteers, who have become friends, that run this program.  This is Brenden's third year riding and he has come so far since his first lesson!
Brenden gets out of school in less than a month!!!!  I was able to get him in for Summer school, but that doesn't start until mid-July, so I better find some things to do!  He tends to get bored at home, so I'm trying to get both kids involved in lots this Summer..

Miss Madelynn.....this little girl melts my heart every day.  Watching her with Brenden makes me a proud mom....she just seems to 'get' that he needs extra help and she's always willing.  She has become a little drama queen, which makes me laugh many times a day.  If she gets in trouble for something, she'll get this sad looking face, and in a very pitiful voice say, "I not feel good, my throat hurts," or "I'm tired."  Whenever I tell her I love you, she responds with, "I love you most-est, most-est."  She loves being outside, riding her bike, playing in the sand box, or playing ball. I asked her today what she wants to be when she grows up, her reply, "Um, a princess and an inmate."  Great aspirations, huh?!  Both kids hear way too much about jail, inmates, etc, etc...."Jail" is one of their favorite things to play.  Last week they were playing in Brenden's room and I heard him tell her to turn around and put her hands up on the wall so he could hand cuff her.  She of course obliged and all I could do was laugh.  (If she hadn't been naked I would have taken a picture because it was probably one of the funniest things I've seen between the two of them.) 
I'll be sure to update next week with race highlights.....Thank you from the bottom of my heart to all those who have helped me get here! 

Tuesday, April 3, 2012

What a busy week!! But next week Brenden is on Spring Break so hopefully we can have some much needed down time to just have fun. We're headed to the zoo this Friday, and hopefully the animals will be a little more lively than when we went last Summer.
Tomorrow morning I have Brenden's IEP meeting, which I always dread. It's no secret that I have always fought for what he needs and deserves, regardless how hard the fight may be. I tend to butt heads with some of the school therapists, but I really hope that by now the realize that I won't back down until they see my side and realize I'm only asking for what is best for him. The school system is a far cry from what we had with Birth to Three and I often times feel like they want to do the bare minimum instead of what I KNOW is best for him. Luckily his teacher is on my side and she isn't afraid to speak up to make sure we get what we need. Since the beginning I've been "that parent," but Brenden is my number one priority.
Yesterday I got to do something I wasn't so sure we would ever be able to....signed Brenden up for T-Ball!! Winchester has a challenger league, designed just for kids who are differently abled. It's non-competitive and operates on a buddy system, where each child has to have someone on the field with them at all times. I think Jonathan and I are more excited than Brenden is right now, but he's been telling everyone and says he needs to start practicing. It doesn't start until June, so we have plenty of time to get him ready. We have a T-Ball set, now he just needs a glove :)
Madelynn has been saying she wants to do gymnastics again, so that may be on the horizon, too. Last time she was clingy to me and really didn't do much during class, so I'll be interested to see how she will do. She is such a wild woman at home, but is the complete opposite out in public. People think she is a quiet little girl, but she is definitely not!! My dad keeps saying she acts just like me, which I find hard to believe :) She's a sassy little diva, and there's no way I was ever like that.....
We will also soon be adding outpatient physical therapy, so things are about to get even busier. Brenden starts therapeutic riding again next week, too. I just really wish I was happier with PT he gets at school so we didn't have to add anything extra, but until something changes, we'll deal with being busy.
Kentucky is quickly approaching and I'm getting more and more excited each day!! I am once again so thankful for the outpouring of support for my fundraising. I sometimes feel like I'm constantly raising money but I've become so passionate about making a difference in the SB world. It's obviously close to my heart so it truly means a lot for the support from everyone. The kids are starting to get excited for "Mommy's race." Yesterday Madelynn gave me a butterfly she made and said, "It's for your race, Mommy." She was so proud and of course it melted my heart. They still ask to watch video of the half marathon I did last year and they practice cheering me on, so hopefully we can get the course mapped out for them to see me a time or two during the race.