Way to go CUBS and other news...

We have been just enjoying life lately. Mostly going to baseball games and sitting outside on the deck enjoying dinner and watching kids play and run in and out. So much different than last summer of waiting on phone calls with cath appointments, surgery appointments and results. I have had to talk myself down from a few anxiety attacks of not seeing the cardio for six months but, I've made it through them and we see him this month! Now I'm panicking again... breathe.
Did I say on the last post that I prayed for neighbor friends, whew... there are always kids running here and there now - Evan leaving doors open and me standing on the porch holloring his name. We have boundaries and it feels SO WEIRD letting him out of my sight. Eric tells me to quit being a helicopter and quit hovering, lol. I usually sit outside and read, water flowers, etc. if he is out playing - a safe distance away to allow him to just be.
This baseball season was SO MUCH FUN. After the first few games the kids just kept getting better and better, making runs and good plays. Evan has become a great hitter! He gained a nickname from the coaches and fans this year - BIG E! When his coach first yelled it, "Get us a hit Big E!" I worried that it would bother him but then I saw this huge smile on his face. He only struck out a few times this season - almost always getting a hit - lots of doubles and rbi's (are you impressed, I learned some baseball?) They would yell "Get us a hit Big E - bring our guys home" and Evan would smile this huge smile and hit and when he would stop at a base he would still be smiling. After the game he would say "Did you hear them Mom... next time I bat make sure you holler GO BIG E!" So for baseball he isn't my little guy but, Big E! He had an awesome coach this year. He was so good with the kids and Evan learned so much. Our team even made it all the way to the final game in the championship and ended the season some in 2nd place. GO CUBS! I can't wait for next season!
Things with my Mom have been hard this summer. She started with knee surgery right before school was out. That went good. As soon as she seemed to be on the road to recovery and out and about again she came down with pnuemonia - 2 weeks ago tomorrow. This put her in bed for 4 days or better. She was really sick. She went in for her checkup from pnuemonia last Wed. and they noticed her heart racing. After an EKG it showed that her heart was beating 175 bpm and she was in Afib. I was shocked when she called and told me this. They set her up with a cardio and they confirmed Afib and put her on coumadin and a betablocker. It is believed to be caused by the pnuemonia as her heart checked out fine for the knee surgery. On Monday they checked her and her heart was 75 bpm and she was not in Afib. They said this can come and go but at least for then it was gone although, it is uncertain if it was the meds or it just being gone. She is at the Dr. today for a stress test, echo and EKG. This is to make sure there is nothing else going on with her heart. We aren't sure what this holds... there are a few possibilities - our hopes is that this will go away and never come back - she might end up needing to be on this medicine long term or there is a possibility they will have to shock her heart. My Mom is my best friend and this has reminded me how lucky I am to have such a wonderful relationship with her. Evan has been missing his Mamaw (and her him) but has been busy with Vacation Bible School and spending extra time with Mommy to let Mamaw rest. So thankful for friends offering to keep him on days I'm not off. I'm a lucky girl.
I mentioned storms in my last post - it has been crazy here! We have had so many tornado warnings and thunderstorm warnings. We had a horrible storm just last night - tornado that came through and dropped here and there all over Louisville. Evan is a mess during storms. He has always had trouble with fear - fear of being alone - fear of storms. His fear of storms makes him a mess. He cries and wants to run to the basement - sometimes I feel like if I shake him he would snap out of it but, I just keep trying to tell him that he has to listen to me and that everything is okay. I can be telling him let's get to our safe place and he is running circles and crying. No one would probably believe me about this but, we had friends over during one of the storms and they were like WOW... he is terrified. Poor guy... we are working on fear.
Hope all of you are well and enjoying summer as much as we are!




GO BIG E!!!




Evan and Jake - Evan brought him home tying the game!




CUBS 2nd place awards night




My beautiful Mom




Eric & I celebrating our 11th Anniversary




A rare girls day - maybe we should do this more often - that was FUN!!!




Evan & Lucas getting down to some funky music at the pools dive in. They floated around watching Gnomeo and Juliet... so cute.

Awana's end... Baseball begins!

This weekend is Mother's Day weekend! How is that so? It was just Easter and here in Louisville this is Derby week! Just doesn't feel right. But whether it feel's right or not it is and I feel so incredibly lucky to have my Mom and be a Mom to my little guy. I've called him that for so long that it has just stuck when talking about him to others so I guess even when he is 6'2" I'll still call him my little guy, maybe. He is such a strong, big guy really. At age 7 he weighs 87 lbs. and I think he is 54 inches tall now. He has always been in the 90% of his age group and has stayed there and never strayed. However, he is my little guy that still thinks he is 3 and daily crawls into my lap to get hugs and kisses and man does that make this Mommy happy. I'm so glad he still loves to get hugs and kisses from me and still wants to be my "baby". He is a mess though - keeps us laughing all the time. He has had a few (quite a few to be honest) yellow days at school. He calls me everyday when my Mom picks him up and tells me about his day. The first thing he says is always "I got green Mom" or "I got yellow, and Mom I don't get it..." he goes into this long story about what happened and keeps saying "I don't get it, do you Mom?" My guess is trying to butter me up so he gets in less trouble at home and sometimes I wonder if he really feels innocent. It is always for talking. The kid talks in his sleep. And he says the funniest things. I said last time that after Christmas we joined Evan up for Awana's and he has been going and loving it ever since. On the first night when picking him up, he turned to the class and said, "peace out, don't do drugs!" My face turned red and I got him by the arm and walked very quickly to the hall where I stopped and asked him "Why in the WORLD would you say that?" His response was, "well... they shouldn't." It was drug awareness week at school but I wondered what they thought of the new family... Awards night for Awana's was last night and Evan and his little friend got their awards and Evan is truly sad that it has ended for summer break. But, just when one thing ends another gets going in full swing. We have been at it for a month I guess now but, Evan's 3rd game of the season is tonight - GO CUBS! Evan loves batting and is so strong that when he makes contact that ball goes. He gets bored in the outfield and loves when he gets assigned a base. At this point they want all the kids to have a chance at different positions so they rotate them. When Evan's in the outfield he mostly plays, balls come his way and he has no clue. He was put on 3rd base last game and he was for real! A kid a couple weeks ago had asked to go to the bathroom and the coach said you should go before the game... he told the kid to go but since he left someone else got to take that kids spot on 2nd base. Well... Evan got 3rd base and needed to pee and he wasn't going to loose his spot. We went to dinner after the game and when we got home it was late and bedtime. I asked Evan to get undressed and was going to put his uniform in the wash. When getting to his underpants, the protective cup had liquid in it and his underwear was soaked. You couldn't tell this from the outside... I guess those new dry wick pants really work... I asked Evan why in the world would you do that and his response, "I'm not loosing 3rd base!" Unfortunately I think Evan has decided this is funny because at the last game Evan was in the dug out and announced... I just peed and was very proud that no one could tell. Sigh... there is an agreement made if that happens again that he will sit out an inning but if he is sent to the outfield I'm not sure he will care. Sigh. So... that's what we are up to. School has 3 more weeks and then it's out for summer! Can't believe my little guy is almost out of 1st grade. We watched home videos a week ago with my parents and I kept saying "awwhh.... look at you Evan, I remember that..." Evan said, "Mom, are you sad?? You like me now, right?" I had to assure him that I LOVE his little 7 year old self with lots of hugs and kisses. One last thing the house sold across the street from us and they have a little boy just a little less than 2 years older than Evan. He is a really good kid and he and Evan just have a blast playing together - when Grant is at his Mom's for the weekend he and Evan play from lunch until 8:30 - riding bikes, playing in the creek, just all kinds of fun boy things. What an answer to prayer... we have prayed since we moved in that there would be a little boy or girl Evan's age to play with - he has always wanted a neighbor friend. They had friends over last week so there was 4 of them riding bikes and throwing rocks, what fun! Last thing... the weather here has been horrible... raining for days and days, flooding that we haven't seen since 2007 and tornado watches and warnings all the time. Evan is terrified of tornados - that might have to be another post. Happy Spring everyone!



Evan & Lucas Awana awards night




Evan playing 3rd base




Our creek - see the ducks?




Our pretty Easter eggs from our dyeing contest





Evan & his neighbor friends : )

Dance Marathon & my "crazy" kid

Team Brave Hearts just finished their 1st fundraising drive since we joined with Kosair Children's Hospital Foundation. The final totals haven't been tallied yet but, I feel really good about the work we are doing here locally. The University of Louisville held their yearly fundraiser for the hospital - the Dance Marathon. They did a wonderful job raising money and we were glad to be invited to be a part of it. Our oldest Brave Heart is a freshman at UofL so, it was neat to see her with her school friends, heart friends and family - raising awareness. We are so proud of her. Go Team Brave Hearts!
We are gearing up for baseball season. We have been playing catch and going to the batting cage. Evan is really good at batting - such a strong stout thing. He is excited about the upcoming season. We rewarded him and a friend to pick something else to do after the last batting cage practice and Evan picked go carts. We have done this before - with me or Eric driving. I couldn't believe it when we walked up and they asked if he wanted to drive - WHAT?!? Age 7 and 48 inches can drive the slower go carts. Oh my goodness, are you serious? Anyhoo... I talked him into letting me drive the 2 mile track and then he could decide if he wanted to drive. The whole way around he kept saying - how do we get back??? I would tell him you just keep following the road. I was sure he wouldn't want to do it himself. When we pulled into our spot he jumped out and said... okay which one do I drive? He buckled in and off he went. I watched him, holding my breath and then about a mile into it I saw him stop. I got the guy and said - he stopped... he is going to be freaking out and screaming... hurry and go get him. The guy jumped on a golf cart and headed Evan's way. I kept thinking, I should have told him not to get out, I can just see him getting out and running across the lanes to get back. The guy came back and said - he's fine and laughing - he ran off and got stuck in the mud. Sigh. When Evan got back he was like, that was fun!
We have started Awana's a few months back and is loving it. He had a friend going there already so he wasn't very nervous about us leaving him there. It's funny... now everyone call's him "Lucas' crazy friend." Again... sigh.
Today is picture day at school. Last Friday night while I was at a 31 party, Eric and Evan were in the garage working on a pinewood derby car - or I guess Eric was - Evan was skateboarding. Evan has this little plastic basketball goal that is still in the garage even though he is way too big for it. He skatboarded right under it and the rim of the basketball goal caught him and scratched up his eyelid pretty bad. A few nights ago I was getting him out of the tub and talking about school pictures and how handsome he was and I looked down and started laughing. I told him I guess we won't forget your skateboarding accident since your pictures will have your scratched eyelid in them! Since then he has been talking about the faces he is going to make in his pictures today, can't wait to get these back, lol. He went from winking that eye to opening his eyes real big like he was scared... He is such a mess!



With our oldest Brave Heart


Writing notes to kids in the hospital


The "boys" in front of the Kosair balloon


Way to go ULDM!

Evan's 7th Birthday Skating Party!

Time flies...

Has it really been this long??? Christmas is over and Evan's elf Jingle has gone home. I really should make a slide show on here of all Jingle's antics. It was so much fun to have him around this year. I failed to mention in the update on Mommy post that I've been sick... a lot. Strep throat seems to be my sickness of choice and I had it 5 times in the last year. I'm praying for a healthier 2011. Evan is doing great though! At his cardio appointment the week of Christmas his cardio said his heart looks wonderful... the pressure was for the first time ever in the moderate range (on a level of 1-50 he was at 14). I left that appointment with thankful tears. We get to go 3 months... oh my goodness... I don't know if I can do it. We have never gone so long without seeing the cardio! Evan has got a passion for skating these days. We went a few times before his surgery and when we were cleared for such activities have started going again. He got skates from Mamaw and Papaw for Christmas and we have been getting a lot of use out of them in our basement and at the skating rink. We have planned Evan's 7th birthday party there. CAN YOU BELIEVE IT? My baby is turning 7?!? I can't. He lost his first tooth on New Year's Eve. He was eating a breadstick at our friends house and ran to me with it in his hand saying "MY TOOTH, MY TOOTH!!!" I got it and grabbed a napkin and put it on the napking while grabbing another napkin for him to put on his bleeding gums and everyone said "OH NO!". They said I had knocked the tooth off the napkin when trying to retreive another napkin and Evan's little friend claimed he saw the dog run over and get it. The dog did run over during all the commotion. We looked and looked for that tooth. I felt so horrible... what Mom looses her baby's first lost tooth??? I do I guess. Anyway... after looking forever we decided Evan's little friend was right, their dog had eaten the tooth. The tooth fairy brings extra $$ for teeth that your parents lose, did you know that? Other news is that we are tired of the freakin snow!!! It's fun - we have a great sledding hill and have had many sled rides and friends over but, I'm done. January is not even over yet, sigh. So that's what is up with us. Oh and I'm trying to cook more and it's not going well.


Another fun day of sledding!


NYE 2010 AKA - the night Mommy lost Evan's tooth

Merry Christmas!

We wish you and your family a very Merry Christmas.

We have been blessed beyond measure in 2010.
Love,
Eric, Sarah & Evan

Update on Mommy...

I just finished my 6 month/year end appointments. I can't believe it has been 1 year since my MS diagnosis. My MRI scans showed that there was no change - 12 lesions remained the same so... it appears my shots are doing their job. For that, I'm thankful as with all the stress this year I was afraid it would be worse. I take a weekly intermuscular injection called Avonex that I administer myself on Friday nights. I drink lots of water that day and set the shot out around dinner to get to room temperature and take Tylenol PM and go to bed once I give myself the shot. The next morning I feel very achy which is the flu like symptoms from the shot. If I'm able to rest and take Ibuprofin Sat. morning, by 10 I'm ready to go. Mostly my legs and feet hurt and at times go numb. My eyesight also does funny things here and there. Anytime I'm extra stressed something happens. During Evan's last hospital stay during the first day I started experiencing this horrible pain in my hip and it lasted for about a month. Hospital stays have been when I've noticed the big things - numbness, vertigo, etc. So... as far as a 1 yr. post diagnosis update goes, my MS has NOT gotten worse. The shots are not fun but, also not horrible (the needle is 1 1/4" and 23 gauge (YIKES). The "it's not cancer, just MS" phase has worn off and now "it's just MS". Other appointments were for a 6 month follow up with a lung Dr. concerning the cancer scare. The CT Scan proved that it wasn't anything to worry about which is good because worrying makes MS worse, sigh. The urologist showed that the 10 stones I've had for 3 years are all still staying cozy in my kidney but growing so it was decided that lithotripsy would be done to break them up. Last Wednesday I went in outpatient surgery for the first of 2 surgeries that will be needed to get rid of these things, as they only do 1 kidney at a time. The surgery was more than I thought it would be. They did my right kidney and zapped 5 stones. When I woke up it felt like I had strep throat and someone had kicked me in the back. They said they had a hard time with the tube and it looked like someone had cut my throat up. It worked though... I've been passing little stone fragments every since. I go in for my follow-up tomorrow and to schedule the 2nd surgery for the left kidney. Might as well get it all done this year! So, that's how Mama has been doing as far medically goes. Life is Good! Well... Life is Hard but, God is Good! And I mean that! I can't tell you how many times the lyrics to the song below has come to my mind the past few months.

You turn the key
Then close the door behind you
Drop your bags on the floor
You reach for the light
But there's darkness deep inside
And you can't take it anymore

'Cause sometimes living takes the life out of you
And sometimes living is all you can do

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

You start to cry
'Cause you've been strong for so long
And that's not how you feel
You try to pray
But there's nothing left to say
So you just quietly kneel

In the silence of all that you face
God will give you His mercy and grace

Jesus never said
It was an easy road to travel
He only said that you would never be alone
So when your last thread of hope
Begins to come unraveled
Don't give up, He walks beside you
On this journey home and He knows

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

A little Elf Magic!!!

Have any other families done this?
http://www.elf-magic.com/
A friend of ours did this last year and it was such a hit that we decided to do it this year. So... a week or so before Thanksgiving Evan wrote a letter to Santa requesting that he be allowed to adopt an elf for the holidays. You keep the Elf until Christmas Eve and are supposed to share with it what the holidays are all about to you and your family. During his stay, your Elf does mischievous things when you sprinkle magic snow on him at night. I loved the idea of making it more about memories than gifts and the letter that comes with the elf says that "the gift of Jesus is more special than any gift on Santa's sleigh." Evan was so excited when we sat out the crackers and water to attract the elf to our house Thanksgiving eve. When we woke up on Thanksgiving Day and Jingle had arrived he was ready to show him all about Thanksgiving, lol. We have had a blast with the nightly pranks - I think Eric and I are just as excited as he is!

Team Brave Hearts

We have been busy! Evan dressed up in his Army man costume and we went trick or treating Halloween night at a local church. He made the cutest little Army guy, don't you think?


We then took our annual trip to Huber's orchard with my Mom (Munc got to join us) and as you can see - Evan couldn't stop to take pictures - he loves playing on all the stuff when we go there. We love eating all the good food and buying some to take home!



Our support group, Team Brave Hearts has had a big year. There are 20 families that are involved in our little group and out of those 6 of them had kids that endured surgery since summer began, us being one of them. We have one little Brave Heart - Annie who was just admitted this past Thursday and put at the top of the transplant list. I don't know what I would do without these families and their support. We have all become so close and I'm so thankful for each of them. So... it's been busy for surgery reasons but also we as a team have been feeling the need for change so this year after many meetings and group talks, we shifted our focus and signed a contract with Kosair Children's Hospital Foundation. We have just begun our partnership with them and we are excited!!! We decorated our first tree as a team for the Festival of Trees and Lights - http://www.nortonhealthcare.com/body_kosair.cfm?id=1472. We think it turned out beautiful! Can't wait to here how much it sold for.


I attached our letter below - why isn't there an attach document feature on blogger??? Anyway... I wanted my blogging friends to know what I was up to! We had our 5th annual Team Brave Hearts golf scramble this past Sunday and it was a success! We haven't put our earnings on our website yet as we have to pay the golf course, etc. but for the late date, we did well! We are planning events throughout the year and like I said, I'm just really excited!

To the friends of Team Brave Hearts,

We hope this letter finds you well. Team Brave Hearts has undergone some exciting changes we would like to share with all of our supporters. In the past we have focused all of our fundraising efforts on supporting the American Heart Association. This money went to support national research for many heart related areas including, congenital heart defects. We are glad to have had a connection with this great organization.

Our next focus is on something that we will be able to feel locally and something that will impact many of our own team members. Caring for the medical needs of children with a congenital heart defect requires a specialized team of professionals - a team that exists at Kosair Children's Hospital. The biggest need this team has right now is an ICU that is designated for heart patients. The number one concern after heart surgery is infection and a designated ICU would isolate heart patients from those who may have infectious diseases. Over the next five years our fundraising goal is to contribute $100,000 to help make a heart ICU at Kosair Children’s Hospital a reality.

We also are committed to connecting and supporting new families on this journey. We will be making care bags that will be given to each new heart family at Kosair that will include items to make the stay a little easier and information on how to contact us for support.

To make this happen, we have teamed up with Kosair Children’s Hospital Foundation. Team Brave Hearts wants to offer support in making the advances in the field of children's hearts possible. Our goal, along with Kosair Children's Hospital, is to ensure world-class medical care for children facing congenital heart defects and needing specialized heart care.

We are so excited about what we can do as a part of Kosair Children’s Hospital Foundation and we would like to ask for your continued support as we take this first step on our new journey. Please join Team Brave Hearts in funding the programs and equipment that make it possible to help children win the fight against congenital heart defects. Every child deserves the chance at life.

Please make a donation today to Team Brave Hearts and Children's Hospital Foundation by visiting:

http://www.firstgiving.com/braveheartsky

Thank you for your continued support,

Team Brave Hearts

Pics of our much needed PERFECT VACATION!!

Scar Infection & Halloween Care Bags

The Wednesday night after Evan's Halloween party I noticed a red knot coming up under his scar towards the bottom of it. It didn't feel warm to the touch but I was worried and glad we had a cardio appt. checkup the next day. At the appt. I told the cardio about it and he looked and said to keep an eye out and if it changed at all to call him. That he thought all would be fine but that he might need antibiotics. He mentioned bone infection but said this usually happens much sooner after surgery. His appt. other than that went great and all looks good. His cardio encouraged me to try to quit waiting for the other shoe to drop and that Evan was doing wonderful. That Sunday morning Evan woke up and at the bottom of the red knot it had turned black. This was a change but since it was Sunday and I felt like I'm too big of a worry wart I decided I would call first thing Monday. I called the cardio Monday who referred me to the surgeon. I called the surgeon and talked to his nurse and told them I had taken a picture of it that morning. She asked me to email it to her and that the surgeon was in surgery but she would fwd. it to him and he would look at it and they would call me back. I anxiously awaited his call and when he called at 1:00 and asked if I could have him there be 2:00 I knew it was serious. I got Evan from school and took him down to the hospital and the surgeon and his assistant were both waiting to see him. They both took a look at it and agreed that it wouldn't require re-admission (YIKES didn't know this was a possibility) and that it looked like a superficial skin infection. They started him on 500mg cephalexin every 8 hours. I explained that we had scheduled a vacation in FL and were supposed to leave that coming Sat. morning and did they think we should cancel. Since it was only Monday they said not to cancel it yet and to check in with them on Thur. To text them a picture of what it looked like and we could decide then. I didn't know I would be on texting terms with Evan's surgeon and nurses. It did seem to be getting a little better each day but was slow progress. I texted a picture on Thur. and they said it was improving so that the medicine should be working and that I was just going to have to go with my gut on if we went on vaca or not. They felt he was better and would be fine. I called Evan's cardio and he too felt we should go - and if it ever seemed to not be getting better to come back home. I was a nervous wreck!!! I did not want to be the party pooper and cancel vacation but Evan's health comes first. It seemed much better on Friday and thankfully the salt water must work wonders because after the 1st day of vacation his scar looked like it did pre-infection! I'm so glad we didn't cancel our trip and I'm so thankful Evan's infection is gone! I'll be posting vacation pictures soon! It was much needed and wonderful.


Evan's Scar Monday Morning


Evan's Scar Thursday Morning

When we decided to for sure have our Halloween party this year Evan said, "Hey... I know, for admission to the party people should bring bags of treats and we will put them in bags and take them to the kids in the hospital!" We thought it was a wonderful idea and were proud of him for thinking of it himself. We added that on the invites - that if you would like to bring a bag of goodies we would be making Halloween care bags to deliver to the hospital Halloween week. I put brown paper lunch bags next to each pumpkin so the kids at the party could decorate the bags that would be taken. A few of the older kids at the party volunteered to fill the bags for us during the party so all the work was done and the bags were ready to go. So... the day after coming back from vacation Evan's idea was acted upon and Halloween care bags were delivered to the kids on Evan's floor at the hospital. He did so amazing delivering those. I was so very proud of my little guy. We met with the nurse manager and I pulled a wagon full of the treat bags (they had candy, pencils, erasers, bubbles, stickers, cookies, etc. in them) while Evan walked with her and hand delivered the goodies to each room. Get this... we had 30 kids at the party so 30 bags were made and there were 30 patients that day on the floor! Anyway... Evan was so kind and thoughtful at each room. The nurse manager would knock on the door and say... hello I'm the nurse manager and this is Evan and he is a former patient of ours and he would like to give your child a Halloween treat bag. They would always say yes and Evan would say things like - "I missed my first Halloween while I was in the hospital and I got a treat bag and wanted you to get one too - or - I hope you like your goodies and I hope you feel better soon." He did so so good and when we would leave a room he would say, "Mom this feels so good!" I Love this kid with all I have. We are so blessed with this little guy.








Last thing... there were tornado warnings here yesterday and the school had to go to shelter for 2 hours. I knew Evan would probably be very upset and I was right. He called and told me he cried the whole time and that his teacher made him feel better by patting his back and telling him it would be okay. He said he was so worried that the tornado would hit them or be where me or his Daddy was. He said he kept praying that we would all be okay. Then he said when it was over he cried again because he was so happy!

Next post will be vacation pictures!

Evan's 2nd Annual Halloween Party

Bedtime

I walked into our bedroom this morning and almost walked right into and flipped over this - http://www.amazon.com/Intex-Pillow-Airbed-Built-Electric/dp/B000HBILB2/ref=sr_1_1?ie=UTF8&s=sporting-goods&qid=1266947062&sr=8-1 .

When Evan was born we were handed a cardiologist. We have since switched cardios. This first set of cardios scared me to death. I feel like if we had our cardiologist we have now things would have been much different. I feel he would have reassured me and set me straight on some of my fears. I knew nothing about hearts and loved my baby so much. I was so afraid of TET spells and had anxiety attacks when he wasn't near me. I took an extended leave from work and kept him in my arms day and night. I cradled him in my arms at night and woke up checking his nailbeds and lips - listened to his heart - checked his breathing - all through the night. I was exhausted. We had such big thoughts of how things would go with our first baby. A bassinet in our room and a crib in another room. Of course after a few weeks our baby would be sleeping through the night in his own room. Well... here we are. Our *baby* is 6 and he is still in our room. Honestly, it is as much my fault as it is anyone's. We transitioned to his room a few times. Then he would have a heart cath or a surgery and would be scared and cry. I would find myself being afraid and having panic attacks again. It was so much better to bring him with us and wake up to look over and see him sleeping with pink lips. Evan has always wanted us to be right there. I'm sure this is because I/we always were. After his most recent surgery he seems to need that much more. We even went to counseling recently. The counselor (who is an expert on counseling kids with serious health conditions) told us if we can give him this comfort and reassurance that we are and aren't pushing him than he will do it on his own terms. Evan is now 65lbs. and 47 inches tall. But he is still my baby and I will always do what I think is best for him. Always. No matter what. Another heart Mom recently said it best... "We are our kids advocate. This is not a job for wimps. I'm afraid I've disarmed people in the process but I will ALWAYS let you know what I think my kid needs and deserves regardless if i pisses you off or not. Parents of special needs kids are so often misunderstood. People see us as difficult. Well, maybe we are, but at the end of the day we just want our kids to have the same success in this world and same opportunities as everyone else without feeling like the oddball. It's simple, right? Be kind to us, our days are not easy. Be understanding, have patience and accommodate because someday, it may be you and then you'll wish you would have." Thanks Kelly... well said.