Worries... and then the "Ah ha" moment

I had posted recently on Miles for JP about how I'm having a hard time digesting that Jonathan's surgery is so close. I had wrote the below note:

JPs surgery is almost 2 weeks away and for months (especially after conquering the MRI) I thought it would be a little easier to look ahead at surgery and get through it. Well within the last week, I realize it's not. My new reality is that I'm not okay. I tend to promote lengthening awareness and feel so confident about his upcoming surgery, but I'm not. Maybe it's my way to deal with it, accept it.

I was at a family gathering this past week and as people wished me well and sent prayers and good vibes my way, I would get teary eyed and now every time I think about his surgery...the day...August 9th, a wave of emotion comes over me.

I know part of it is anxiety...the MRI was a quick procedure, this surgery is not. The experience FH mom's tend to remind all new mom's that the hardest part is getting through the first surgery. The truth is this surgery is the turning point- it will give JP a more functional foot and set him on his way to lengthening and some day give him more even legs. While I stand behind our decision a 1000% to go the lengthening route, I worry and question that this is right for JP and our family...like any parent would.

Tonight, a FH friend wrote a new blog post, the end paragraph resinated with me....JP will always have FH, it will define him, but it will make us a stronger family, make us better parents, and (has) already opened my eyes to other people's struggles.

Please continue to keep us in your prayers and get through the anxiety to when we arrive at Jonathan's surgery.

While I'm still trying to deal with my emotions, I have slowly understood this is my reality. I come from a family who uses the motto- "God has a reason for everything".  For the last 2 years I have had a hard time digesting and  believing that this was meant to be my path. I have continue to accept and then go back to struggling with JP's diagnoses and surgeries.

One of  my close friends was recently diagnoses with Breast Cancer and it has broken my heart. We're planning a playdate for our kids, but also a time for her and I to hang out and support each other. She has lost most of her hair and shave the rest off. Today, she sent me a text message to let me know she doesn't typically wear her wig at home, but would do so for Aiden. My response was to do what she felt comfortable with, but also whatever is a typical day for her.

And then came my "ah ha" moment...we have spent a lot of time talking with Aiden that sometimes people look different, act different, but they're loved and are just as special as anyone else. Of course this discussion comes from JP's condition. It started with us talking with Aiden when JP was born-  how we discussed that Jonathan only has 8 toes and a leg shorter and not "normal" looking like him.

I'm not saying that JPs FH happened so I can talk to Aiden about my girlfriend having cancer, but it's nice to know I don't have to spend a lot of time explaining it to him either. I'm not sure he'll even notice because he's so excited to have a playdate with his friends, but if he asked, I know my response will be totally understandable to him that he'll be like okay and then go back to playing. It has also helped me explain to him when we see kids with down syndrome or autism or just a physical disability.

I hate that my girlfriend has cancer. I hate that my son has Fibular Hemimelia. I hate that they both will have pain and struggle. I do like that JPs FH has taught Aiden about acceptance, about the fact that people are different, that people act different. It has helped me have conversations I once never thought I would have with a 4 year old. It has encouraged him to ask questions, which we hope strangers will do about JP, instead of stare. It also has taught him that Mommy (and Daddy) might be sad sometimes....but it's okay, it just us accepting that we love everyone.

OBX 2013

Well the time for our annual OBX trip has come and gone.  We went down with our good friends Frank and Nicole again. It was a great and relaxing (okay as relaxing as it could be with a 4 yr old and 1 yr) week. Our weather was perfect, only really raining the last day, but the sun was so hot! This year we left a bit earlier then usual, leaving at 4am. We were hoping to put the sleeping kids in the car, but both woke up as we buckled them in their carseat and stayed awake, luckily they took a nap around 6am!

The boys bright and early watching tv in the car

Around 9 am we stopped for breakfast in VA and then pushed onward to OBX. The ride was nice (and the kids were pretty easy to deal with, which was shocking because JP tortured us on our 2 hr ride to the Jersey shore the weekend before) with limited traffic till we hit the bridge to come into the Outer Banks. It took us about 30 mins to get over the bridge onto the island and then another 2 hours to go up the island to where were stay in Corolla.

We spend a good amount of time at the pool that our house had..which is usual protocol for us anymore. It's nice to have some "fun" close to home and it worked well this year with JP's nap schedule too. Aiden has become more and more

independent in the pool the last two years, so when JP was napping it was Mommy's free time!

Family pool picture

Mommy and her babies in the pool

My pool babies

My water rat

The Gang

JPG and Frank & Nicole

JP wasn't a fan of the float/boat  that we had  for him. We had bought it 3 years ago for Aiden, who did well with it back then, but my ever crazy/constantly moving boy Jonathan didn't like it. We did "force" him in everyday and he would last about no more then 15-30 mins.

Aiden circa 2010

Jonathan circa 2013

JP was not a fan of the big pool and was very lucky that his Daddy and Frank loved him enough to buy him a kiddie pool. He would play with the beach toys in it and have his own great time. It's also were we stuck Aiden when cleaning the big pool.

When we did hit up the beach it was blazing hot. The boys loved playing in the sand and digging with their shovels and toys. The heat didn't seem to both either of them nor did the sand. Mommy isn't a fan of the sand, but has learn to embrace it because of having kids.

Jonathan loved the ocean, which just seemed so crazy since he isn't a fan of the pool. He just wanted to run and jump in the water like all the other kids. It was actually a little hard for me to see all these kids running around the beach and splashing in the ocean and all JP could do is sit there or have me hold him since he didn't have shoes on. It really got to me at times, but I had to keep reminding myself that next year he'll be doing the same...and on his own two legs.

 Aiden is a little more apprehensive of the ocean, he's like his Mommy, a pool rat. He loved to play at the shoreline, but wouldn't go in much further then his ankles to jump and splash in the waves.

All in all it was a great week, a lot of fun had, and sorry it's already over. It's also time for us to start spending the next 4 weeks preparing for JP surgery so we can get him ready to splash in the ocean next year!

A Loving Weekend

This weekend we headed to the NJ shore to start our 1st vacation of the summer. We got to spend some time with our friends the Lovings - George, Amy & their son George, as well some of their friends. We have known George and his family (aka Mom/Sister) for a long time; Keith and George have been friends for over 15 years. We got to meet Amy thru George and became friends with her as their relationship grew and became Husband & Wife....and we just absolutely adore Baby Geo.

The weekend's weather was predicted to be rainy and miserable, but it turned out to be just perfect. We got down there Friday around dinner time and had  time to just hang out with George, Amy & Little G. It was a nice "quiet" evening... okay as quiet as 3 kids could make it. Little G just loves Aiden and Aiden loves him (probably because George does what Aiden asks, unlike JP). The boys had a great time playing together and tiring each other out.

Of course Saturday morning, Aiden woke up with a bad cold which coupled with his reactive airway disease, where his breathing becomes labored. During the morning he was very sedentary; just laying around, but it was also rainy so it wasn't that surprising. Once the rain stopped the kids wanted to go out to play and Aiden jumped right on board. The kids went outside to play with the water table and pool while the parents "relaxed". (Okay the Dads got to go out out and have some fun while the Moms stayed back and tried to enjoy the time together while watching the kids - LOL!)

After dinner, since the weather was still holding out (no rain), we decided to take a trip to the bay. It was perfect; not too hot and the sun was setting, but the kids got to play in the sand. I already knew Aiden would love it; feeling under the weather or not, he kept asking about the beach. JP surprised me with how much he enjoyed it. I put him in the sand and he just dug in and started playing - oh and eating it. I was happy that he wasn't intimated, but from a person who's not a big fan of sand, a little scared too. 

We spent about an hour at the bay before heading home to clean off the kids and put them soundly to sleep so the Moms and Dads could hang out. There is definitely something about sea air. Unfortunately, Aiden didn't sleep well because of his cold and his breathing which became labored again in the middle of the night. I got nervous that we might have to go to Urgent Care or the ER for a treatment; then morning came around and he seemed to be feeling better which I was so happy about. Of course it rained all Sunday morning, but the boys "ran" around the house having a good time and driving all the Moms and Dads nuts. Then by mid afternoon the weather cleared and we all went back to the bay for some more sand time.

After about another hour at the bay, we went home and bathed the kids. A little while later it was time for Keith and I (and the kids) to get ready to say 'goodbye'. So we packed up, gave our love and gratitude to our great friends and went to the boardwalk to give Aiden one last dose of fun before heading home.

Aiden, of course, was exited to "drive", "swing", ride the boats, go on the Merry Go Round, etc. And we got Jonathan to do a little bit of the rides. He went on the Merry Go Round with Aiden and I and rode the Monster Trucks with Mommy. He was taking in the whole boardwalk scene in and enjoying it. 

All in all it was a relaxing weekend and once again we're reminded of the amazing friends we have supporting us. We feel so lucky to be friends with George, Amy & Little G (plus Dot & Beth - George's Mom and sister) and for the "Loving" (excuse the pun) relationship that we have with them and value so much. Thank you, guys, for letting us hang out down the shore with you. We hope this can be a routine thing!