"The Mom Stays in the Picture"

About two weeks ago I ran across this article called "The Mom Stays in the Picture" (it's been around on Facebook as well), but this article was genuine, truthful, heart-felt and stole the words from my own mouth at times.

Its so easy to not want to be in front of the camera, always wanting to snap a picture of your sweet one (because its true -- they are much sweeter to look at), or say "I'll take the picture" only to have everyone you love caught forever on film and yet there was no evidence you were right there with them.

I love looking and having pictures of Daddy and Jocelyn together, and it never fails to make me smile or even tear up at times. Justin isn't a big picture-taker, so when I do get ones of them, they are treasured and 100% perfect ... to me!

Now, its easy to take one of Jocelyn and I (well, sometimes) because we are together more often, but if the picture looks "bad" then its like it "doesn't count" or should be deleted, not shared and definitely not scrapbooked.

Why?

Jocelyn doesn't care what I look like ... not even in the slightest. I imagine she loves the scent of my unwashed hair because it smells like ME, or hanging out in our warm PJ's because mamas extra warm and cozy for the snuggling, my crazy fizzy hair because its fun to play with and makes her laugh when it tickles her face, my chubby cheeks because it perfectly frames my smiles further letting her know her very presence is what makes my world go round and the list goes on and on.

Our children want to be near us, have their picture taken with us and when we are gone -- it will be a priceless piece of art that speaks to the very core of their heart!

Enjoy the short but powerful article!

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Last weekend, my family traveled to attend my oldest niece's Sweet Sixteen party. My brother and sister-in-law planned this party for many months and intended it to be a big surprise, and it included a photo booth for the guests.

I showed up to the party a bit late and, as usual, slightly askew from trying to dress myself and all my little people for such a special night out. I'm still carrying a fair amount of baby weight and wearing a nursing bra, and I don't fit into my cute clothes. I felt awkward and tired and rumpled.

I was leaning my aching back against the bar, my now 5-month-old baby sleeping in a carrier on my chest (despite the pounding bass and dulcet tones of LMFAO blasting through the room) when my 5-year-old son ran up to me.

"Come take pictures with me, Mommy," he yelled over the music, "in the photo booth!"

I hesitated. I avoid photographic evidence of my existence these days. To be honest, I avoid even mirrors. When I see myself in pictures, it makes me wince. I know I am far from alone; I know that many of my friends also avoid the camera.

It seems logical. We're sporting mama bodies and we're not as young as we used to be. We don't always have time to blow dry our hair, apply make-up, perhaps even bathe (ducking). The kids are so much cuter than we are; better to just take their pictures, we think.

But we really need to make an effort to get in the picture. Our sons need to see how young and beautiful and human their mamas were. Our daughters need to see us vulnerable and open and just being ourselves -- women, mamas, people living lives. Avoiding the camera because we don't like to see our own pictures? How can that be okay?

Too much of a mama's life goes undocumented and unseen. People, including my children, don't see the way I make sure my kids' favorite stuffed animals are on their beds at night. They don't know how I walk the grocery store aisles looking for treats that will thrill them for a special day. They don't know that I saved their side-snap, paper-thin baby shirts from the hospital where they were born or their little hospital bracelets in keepsake boxes high on the top shelves of their closets. They don't see me tossing and turning in bed wondering if I am doing an okay job as a mother, if they are okay in their schools, where we should take them for a vacation, what we should do for their birthdays. I'm up long past the news on Christmas Eve wrapping presents and eating cookies and milk, and I spend hours hunting the Internet and the local Targets for specially-requested Halloween costumes and birthday presents. They don't see any of that.

Someday, I want them to see me, documented, sitting right there beside them: me, the woman who gave birth to them, whom they can thank for their ample thighs and their pretty hair; me, the woman who nursed them all for the first years of their lives, enduring porn star-sized boobs and leaking through her shirts for months on end; me, who ran around gathering snacks to be the week's parent reader or planning the class Valentine's Day party; me, who cried when I dropped them off at preschool, breathed in the smell of their post-bath hair when I read them bedtime stories, and defied speeding laws when I had to rush them to the pediatric ER in the middle of the night for fill-in-the-blank (ear infections, croup, rotavirus).

I'm everywhere in their young lives, and yet I have very few pictures of me with them. Someday I won't be here -- and I don't know if that someday is tomorrow or thirty or forty or fifty years from now -- but I want them to have pictures of me. I want them to see the way I looked at them, see how much I loved them. I am not perfect to look at and I am not perfect to love, but I am perfectly their mother.

When I look at pictures of my own mother, I don't look at cellulite or hair debacles. I just see her -- her kind eyes, her open-mouthed, joyful smile, her familiar clothes. That's the mother I remember. My mother's body is the vessel that carries all the memories of my childhood. I always loved that her stomach was soft, her skin freckled, her fingers long. I didn't care that she didn't look like a model. She was my mama.

So when all is said and done, if I can't do it for myself, I want to do it for my kids. I want to be in the picture, to give them that visual memory of me. I want them to see how much I am here, how my body looks wrapped around them in a hug, how loved they are.

I will save the little printed page with four squares of pictures on it and the words "Morgan's Sweet Sixteen" scrawled across the top with the date. There I am, hair not quite coiffed, make-up minimal, face fuller than I would like -- one hand holding a sleeping baby's head, and the other wrapped around my sweet littlest guy, who could not care less what I look like. -- Written by Allison Tate

Human Gobstoppers

Wait...

...I mean...say hello to the Lawrence Color Run 2012 Champs!!!

{Literally the most fun 5k I've EVER done!}

{Cherry, her son Grady & I}

{My awesome friends Ashley & Cherry}

 {Amongst the insane chaos -- I ran into an old dear friend Kelli -- what were the odds??!!}

{Even ran into the Topeka TARC girls! They are the sweetest!}

 

I really was surprised by not only how fun this race turned out to be, but also by how many people were there. The Color Run officials stated online that this was one of the largest 5K's in America with over 8,000 participants!

 

Here is probably a 1/4 of the people at the race!

From a different view.

{We stood in this line for over an hour! They made it fun with music, prizes, etc}

 

Here are some shots after everyone was all color-fied!

 {Every 15 minutes they had a "color party" -- It was totally crazy -- not to mention completely blinding!}

 

Justin and Jocelyn stayed at home for this race and let mommy go and have a little bit of lung cancer induced fun! Seriously, I was coughing for a while after the run with all the powdered paint that was flying around. Maybe it was because I actually ran the 5k and it seemed to be geared more towards walking. I originally wanted both of them to at least come, but after seeing what this race was all about, I know this would've been really bad news with Jocie having chronic lung disease.

 

When I finished the race I thought my stopwatch said 21:38 minutes and that made me think two things:

1. I'm either way crazy faster than I thought or...
2. This wasn't really a 5k!

Turns out I read my watch wrong and I ran the race in 24:38 ... that sounds more correct but still faster than my norm even with all the bob-n-weaving I had to do with the mixture of walkers and runners! :) I was pretty pleased with the time because typically I am pushing Jocelyn in the stroller and average about 30 minutes for a 5k. Lately even without her, I've only been able to do it in 27 minutes. Its hard to speed up when your use to a certain speed. Either way, the race was a blast, and so distracting, that you don't realize your done until you cross the finish line.

 

This 5k was my first one since having Jocie-bear, and I gotta say, it was a great one to start with!

 

Next race? Bring on the Maple Leaf Festival!!! :) :)

Preschool!

Preschool officially started Wednesday October 3rd! Our current schedule is every W, Th & Fri from 8:45am to 11:15am, she receives a different therapy on each day and even gets to go swimming on Thursdays.

Both Jocelyn and I survived our first 3 days of preschool ... barely!

Of course Jocelyn did pretty darn amazing with the whole transition and as for mama? Verdict is still out.

Here are some "first day of school" pictures:

{Daddy and Boogie}

{1st day of preschool and she needed a nap before we even got started! She slept 7:30am to 8:05am, then she HAD to get up so we could get dressed and on the road. That's what happens when you get up before 5am all the time -- thankful we had time for a nap!}

{Double checking to make sure everything on the wheelchair is secure & ready. Yes, her legs are as long as they look!!! She is a tall girl for sure.}

{Buckled and ready to go!!!}

{Mama jumped in the van beside Boogie to steal some Mother/Daughter shots!

See Boogie eye-ballin' me? hahaha She was like "Whoa! You came at me

from the other side!" She got a million kisses before hand!}

 

I think because Jocelyn has received therapies and been "handled" from the minute she exited the NICU, she really wasn't scared by the new adults or even the other kids for that matter. She has always been quite the social butterfly. She didn't shed one single tear or whine!

Once we arrived to Kidlink, we entered the building with the other kids right at 8:45am. All the kids were instantly infatuated with Jocelyn and everyone wanted to sit next to her. There is one girl in particular that is a total mama hen wanting to show Jocelyn everything, bring her whatever she needs and even entertain her to get a smile. There is also the sweetest little boy that has been smitten with Jocelyn. He tries to sit by her when he can, pets her (yes, he literally wants to pet her but not in a weird way) and he really gets her to giggling. Turns out, he has an older brother who is even more involved than Jocelyn and I am sure that is why he is so quickly taken by her.

All the kids were pretty stinking cute!

On the first day of school there were a total of 11 kids in the class, the teacher, 2 assistants, 1 volunteer and the director of the program. Pretty good ratio huh?

The director is not typically in the classroom, but seeing how no one knows Jocelyn and her pending needs, she will be present for a little while to assist the others in educating, guiding and so forth.

Here is part of Jocie's classroom and the window that I can watch from.

Even though I stayed and watched (lets be honest, I watched all 3 days), I totally cried my eyes out when they took Jocelyn into the room for the very first time. I gave myself a pep-talk before even getting to the preschool, but the very second we walked in building, I could already feel my eyes stingy!

 

Here is Jocelyn's cubby, her first day on the outdoor playground with the kids and first time swimming with complete strangers (you can barely see her with the two ladies)! During swim days, there is 1 volunteer for each kid, and for Jocelyn, she will initially have 2 volunteers until they know her better. I don't care how many volunteers they have/had ... I was still terribly nervous for her to be in the water with people I didn't know. Turns out, they were beyond cautious and I found myself saying "Its okay ... let her go and have it!" Those Water Way Baby neck rings are marvelous!! This neck ring gives Jocelyn so much independence in the water, allows the caregiver to be hands-free and eases the task of doing "therapy."



Here is Jocelyn's very first school craft! A Bird Treat!!



Not everything has been peaches-n-cream the last three days, and particularly on Thursday. Although Jocelyn didn't cry the first day of school, right at the beginning of the second day, she was quite tearful. The trigger for the tears was during morning circle time and the whole group started singing (and of course loudly as every kid does) and she was totally terrified! Sometimes her hearing is overly sensitive and my heart was literally breaking!! All I wanted to do was rush in there, swoop her up and comfort her. Instead, I continued to watch through the window, showed restraint and found myself getting increasingly angry as no one leaned over to explain to Jocelyn what was going on, offer her reassurance or a simple pat on the arm telling her "everything is okay" and there was a staff member literally right next to her.

 

After a little bit Jocelyn stopped crying and center time began. Jocelyn remained in her wheelchair which was inserted into a Hi/Lo base (this is a special device with wheels that has hydraulics that will allow Jocelyn to be high up in the air, or sit as low to the ground as if she was nearly seated on her bottom). I didn't have a problem with Jocelyn being in her wheelchair because she was about to do an activity that required her to be positioned well, but what I didn't like, was that she was slumped down in her seat, the lateral supports were clear up into her armpits, her base was not locked so another child was pushing on it with their feet, she was totally not at kid level and she was a little ways from all the kids. So, I kept thinking, "how is she suppose to interact with the other kids, participate and even get anything out of this?"

 

Luckily, the director came in to talk to me at that time (she had not been in the classroom due to a morning appointment) and I informed her of my observations. It took her about 20 seconds once she entered the classroom to correct the situation, but I found myself saying "Is this how its going to be when the directors not here? Does no one know how to position her correctly? Are the staff aware of her needs to adapt activities to her level? Do they know how to include her appropriately? Why is no one paying attention? Isn't this a place where other special needs kids like Jocelyn have attended before? If so, why does everything feel so awkward and uneasy?"

 

After the second day I found myself supremely stressed out and contemplating what in the world were we doing. Is Jocelyn too young for this? Not ready physically and cognitively? How can I ever leave while she's in preschool? (I will always be present for the therapies ... that's just the way it will be) The pace of preschool is entirely too fast for Jocelyn!!! How are they going to slow it down for her so she can learn something? How long will it take to learn what they need to do for her?

 

I found my thoughts almost screaming inside my brain!

 

Jocelyn is my one and only concern. I know that preschools have many kids they have to attend too, but I will always put Jocelyn first ... I'm her mama ... that's what we do!

 

I am also one that understands that people don't have to do things exactly like I do (but come on ... I totally want them too!), but the point is that we don't have to do things the same way as long as we still get the same end result!! It will help Jocelyn if the therapist, her teachers and I are all using the same system for educating and hopefully that will come in time.

 

This is the first time that a group of people ... strangers in fact ... that have been given the chance to get to know and care for Jocelyn. That in of itself is a difficult thing for us ... I'm proud of us for taking this step as parents ... but I also know that anything I see that I don't like, will only be magnified.

 

Last night as I laid in bed, my heart was so burdened ... heavy ... irritable and confused. I was praying to God to help me see the path in front of us clearly and to give me much needed peace about Jocelyn being in preschool. Ultimately I fell asleep while praying my fears ... my heart.

 

Today as we entered the facility for our last day of our first week, the director pulled me aside and requested that we talked about how the last 2 days have went, expectations, areas to work on, etc.

 

Turns out -- WE ARE ON THE EXACT SAME PAGE!!! I silently laughed to myself and said "You sneaky little God! Thank you!" She was very honest in regards to the staff needing training on how to specifically care for Jocelyn both physically and in educating, we discussed that we will need to adjust activities and slow them down for Jocelyn so they are meaningful for her ... so they are challenging yet so she is able to be successful. We discussed how we will need to review her equipment so everyone knows how to utilize it appropriately and safely. We talked about providing something tactile or visually closer and stimulating during circle time to enhance Jocelyn's participation (the other kids use their vision and watch the teacher; whereas for Jocelyn, everything is too far away for her to be engaged). There were a whole lot of other issues we discussed which was greatly appreciated. 

 

I can't tell you how much I appreciate honesty!! Its okay to not know how to do something, be a work in progress, not feel comfortable ... as long as a person is wanting and willing to learn! I would rather someone ask me 15 times how to do something in regards to Jocelyn rather than just assume or not do something in fear of breaking something, hurting her, not wanting to appear "dumb" and so forth.

 

It helps to remember that we've been with Jocelyn her whole 2 1/2 years and of course know her thoroughly ... its going to take the teachers/assistants/volunteers time to achieve a similar understanding.

 

Ultimately our talk soothed my heart and gave me the courage to try another week.

 

It was pretty great seeing Jocelyn be excited by the other kids, observing how she would watch them, how the other kids wanted to be her best buddy ... be so helpful in every way! It was even good for me to see that someone else wanted to get to know Jocelyn ... teach her ... help her and even very soon will love her!

 

Week #2 -- here we come!!!

Family Things

Our last days of September, and first week in October, have been filled with traveling, family and fun.

After Justin got off work on Saturday {that made him working 14 days straight :|}, we finished the remaining, daunting task of packing our stuff which actually meant all of Boogies stuff. It's ludicrous how much we have to pack for her! Once we were all finished and the fab van was packed by none other than the master car organizer Jib-tastic, we were on the road for Wellington and Winfield.

Once we got into Wichita, we took Jocelyn's poor busted iPad to the Apple shop to see what they could do for us. Not only is the iPad glass broken, but so is the screen itself. I guess that makes everything much more complicated -- meaning more $$$$$! Hopefully we will be pleasantly surprised ... I know, I know ... but I said HOPEFULLY!

After the quick computer shop stop, we found ourselves at the new casino between Wichita and Wellington. For a little bit of fun, we stopped and spent some money. Here's my handsome fella ... don't let him fool you, he only lost $5!! Ha!

When we arrived to Justin's moms' house, we had a nice relaxing evening with a yummy home-cooked meal. Isn't that the best?

We all turned in early Saturday night after a busy day of work, traveling and all the normal stuff. Sunday was quite the interesting day for us though. We tried a new protein source (walnuts) in Jocelyn's blenderized diet and it was an epic fail!!!!! In fact, we had our first clogged Mic-Key button! We tried several things and nothing ... nothing! ... was working to unclog that sucker!! We could not believe out of everything we've given her ... mixed nuts, almonds, pistachios, sunflower seeds ... that walnuts would have clogged the balloon??? What??!!!

We ended up having to entirely remove the Mic-Key button, cleaned the entrance and exit of the whole device, and then reinsert the balloon. Talk about a borderline freak-out session!! Personally, I was afraid we were going to be too rough, puncture the whole thing and then be SOL! Luckily, the whole operation was successful! As you can imagine, all that food was dumped and a new batch of "walnut free" food was made for the remaining meal(s).

LESSON LEARNED!!

On Sunday, Grandma and Grandpa Garlow were very sweet and took care of Jocelyn for a few hours that afternoon while Justin and I went out for a matinee. We never get to go to the movies, and we should more often, because it really was pretty wonderful! We went into Wichita and watched the new Resident Evil: Retribution movie which continually scared the ba-jezzus outta me! There was nearly no one in there, oh...except the crazy "worse-father-of-the-year" who brought his 3 or 4 year-old ... oh, and the lady that brought her baby. Trust me, I was literally jumping out of my seat at times, so this was definitely not a movie for a little one. I felt so bad for the little boy because he kept crying and saying "I want to go home daddy ... this is scary." Poor kid, he's guaranteed to be scarred for life!

Grandma and Jocelyn had fun together!

On Monday, before we got to see Papa and Nana Powers, we had a fun day with just the three of us. It was a beautiful Monday morning, so we took Jocelyn on a trike ride and stopped at a school playground so she could take a break and swing. Once we got some exercise in and loaded up the van again, we headed for Towne East Mall in Wichita. While Justin and Jocelyn took off through the mall, I made a quick stop at the JCPenny salon {its been a long time since I've had a hair cut}.

 

The salon was able to get me right in with the sweetest lady. I told her I just wanted a trim with a few layers, and not to worry about styling it. The beautician was fabulous with washing my hair and even gave me goosebumps! As we chatted about our kids, husband and life -- I learned she came to America about 20 years ago, learned English and a lot of other things about the Hispanic culture. She really was the nicest person ... one of those beautiful on both the inside and outside type of people! After she gave me a fabulous haircut, she asked "do you ever straighten your hair?" I said "yes" and she replied "well here, let me just pamper you and do it for you." Usually I hate someone trying to style my hair {I say 'try' because it always looks terrible} and getting your hair styled typically cost more. The lady was so genuine that I figured what the heck, and she did a really good job. After we are all through, I stood at the counter ready to pay. She handed me my ticket and said "thank you ... its no charge today ... I hope your day is spectacular!" I looked at her obviously confused, and that's when she proceeded to tell me that once a month they are allowed to do a "hair service" free of charge to someone and she choose me. I was in disbelief and felt so loved ... I hugged her, said 'thank you' repeatedly and of course cried. The whole time this lady was doing my hair, I never once felt like I was inconveniencing her or not the center of her attention. She knew the definition of customer service, sincerity, courtesy and probably has absolutely no idea how wonderfully special she made me feel.

 

After we were finished at the mall it was time for some lunch. We ventured over to On The Border {a dear friend of mine gave me a free queso dip coupon a month ago and it was begging to be used ... thank you Terri Rowe!!}. While sitting out on the deck of the restaurant, Jocelyn got her blenderized meal while Justin and I chowed down on some chips, salsa, queso, guacamole and washed it all down with some super saucy margaritas!! It was a wonderful afternoon!

 

Once we knew Papa and Nana were home from work, we headed to Winfield to spend some time with them. Poor Papa was going to be having pretty major back surgery the next day (Tuesday), so Boogie needed to give some much needed love and sprinkle her magical fearless powder on him! We of course had a great evening with sporadic cases of telling Papa to relax, go take his Hibiclens shower, go to bed and so forth {do you think he listened? NO!}.

 

The morning of Papa's back surgery, daddy went with him and Nana while Jocie and I stayed back at the house. Hospitals are not a fun place to be to begin with, but they are also a cesspool of germies and our little princess didn't need to be getting sick.

 

After the surgery, Jocelyn and I went up to the hospital to see how Papa was doing. When we got into the room Jocelyn kept staring at him and actually looked concerned ... something we haven't really seen before.



After the surgery, Papa was in good spirits and even with the heavy pain meds on board, somehow he didn't lose his sarcasm :)! Nana and Jocie thought singing might be a good idea as you an see hahaha ... okay, so they weren't singing, but I think they wanted too!

It was so nice seeing family, having some down time and thankful Papa's surgery went smoothly.

Next adventure?

Preschool starts today!!!

Pies, Push-N-Pull & Preschool

Tonight we should all have happy mouths and tummies! I'm going to try a new recipe (and its suppose to be quick and easy). So what is it? Chicken Pot Pie Cupcakes!!! Sounds delish on a cloudy, cool day doesn't it? Also, since its on our Fall 2012 Bucket List and because I seem to be in a baking mood, I'm making a homemade carmel apple pie.

Justin bought some thoroughly disgusting $1 pot pies the other day because he "just had to have one," and the whole time that thing was cooking (which was forever), he was like a giddy school girl and going on and on about how good it was going to be. Mind you, he made one for me too and I was equally as excited -- NOT! So, being the wonderfully thoughtful wife I am, I saw this recipe on a girlfriends Pinterest wall (thanks Amber for finding the fun, tasty stuff) and decided to make it tonight. I'll have to let you know how all of it turns out! :)

When Jocie and I went grocery shopping yesterday, we tried something a little different. Seeing how this last Botox session has made Jocie like a cooked noodle, sitting in the shopping cart is extremely difficult for her. Sitting in the shopping cart is also more of a challenge since I lost the black foam-type seat thingy the Lawrence Infant Child Development made for me that helped keep her planted in one place (I'm pretty upset I left it in the shopping cart a few weeks back). But anyways, the last time we went to the store, it was very difficult for us both and I knew I couldn't do that again seeing how I physically had to carry her the whole time and about broke my back :|!! So yesterday I put Boogie in her wheelchair and decided I would try pushing her and pulling the shopping cart behind me as we did our shopping. To my surprise it went really well. We drew an audience and watchful eyes from time to time, but I didn't have to kill myself trying to help her sit or by holding her, she was positioned well and she seemed to be having a good time which was evident by her endless giggling (she loves going to the store because she gets to touch everything -- or at least I try to get her too! The produce section is an awesome place for talking about colors, smells, textures, sizes, same/different concepts, etc!).

In other news we are actually -- shockingly -- and some may say finally!

 

~*~***STARTING PRESCHOOL***~*~

 

Yep! You read that right. We are beginning "official" preschool next week on Wednesday October 4th at the Easter Seals Capper Foundation Kidlink program. I am sure you can all imagine how difficult this is going to be for me. I must have completely and utterly lost my mind!!!

 

We never had any intentions of putting Jocelyn in preschool (neither Justin nor I ever went to preschool and we turned out just fine ... I think :P). Our decision to enroll Jocelyn in a preschool program is not one we intended to do as we actually have been leaning more and more towards homeschooling rather than public school. Even though we are trying preschool, homeschooling is very much still in the forefront of our minds, but here are some reasons we've decided to try preschool outside of the home:

1. It will only be 3 days a week (W/Th/F) from 8:45am-11:15am. For the same fees they actually provide preschool 5 days/wk, and this preschool is year round. Just because we are leery and seeing how this will be a dramatic change for Jocelyn (and for mama), we are starting with only 3 days/wk.
2. It will be at the exact same place Jocie has received her therapies over the last year and half which will help easy the transition.
3. During those 3 days, Jocelyn will also receive her normal PT, OT and SLP.
4. Every six weeks, for a six week period, Jocelyn will get one-on-one swimming in their indoor pool with her classmates.
5. Jocelyn has no other siblings for continual interaction, and this particular preschool will offer peer models as it contains children 2 1/2 to 5 years-old.
6. And finally, it will give us a chance to trust someone else with the care and education of Jocelyn.

That last reason is a biggie for me! I hate that I don't automatically trust people with Jocelyn, but I'm her mama, no one loves her more than I do, and I still sometimes have to step back, take a deep breath and then approach things differently. Its a lot of hard work taking care of Jocelyn in regards to patience and even physically. So if I get tired or frustrated, I know someone else will too and maybe even more so, which of course is always a worry. However, I also know there is a very good chance that Jocelyn may perform more, or better for someone else, and maybe ... just maybe ... watching and seeing what other kids are doing might inspire Jocelyn to do the same.

Oh and WOOHOO! for us -- in a past blog entry called Busy, Busy, Busy -- I talked about taking Jocelyn to see an Endocrinologist. Well, both the x-ray and lab results came back within normal limits!!!! Yahoo! So it looks like no beginning of precocious puberty for us! So thankful! 

---------------------------------------------------------------------------------------------------------UPDATE:

The cupcake pot pies turned out INCREDIBLE!!! I made half with crescent rolls and half with flaky biscuits. I thought the crescent roll ones were divine and Justin preferred the biscuit ones. Seriously people -- these are the most amazing things I've made and eaten in a long, long time!!! You've gotta try them. The proclamation that these are fast and easy to make was indeed correct. They are actually filled with healthy ingredients too so that's a perk! Oh and the apple pie? It got served with drizzled caramel and a scoop of vanilla ice cream! Tonight's been a delicious night and calorie free! Well, I'm pretending its calorie free -- who cares anyways? :)

 

 



"Welcome to Holland!"

While looking for something else entirely, I ran across a letter today that we were given during our treacherous NICU days.

The title of this letter is called Welcome to Holland by Emily Kingsley. I remembered one of the NICU nurses gave me this story as it pertained to having a child with special needs. I suppose even then it was obvious the road we were about to embark on, and I think this was the nurses way of providing encouragement. Looking back now, its always most appreciated when a nurse can do more than chart and pass meds, and that is speaking from my own personal experience as a practicing nurse. So often long gone are the days when you can take a more holistic approach and also be concerned about a patients' (or patients family) emotional, mental or spiritual well-being.

I vaguely remember reading this story over two years ago (I'm sure it was during one of the many long, stressful days while sitting next to Jocelyn's incubator). Today, I took a second to re-read this story, and although this mother shares her experience of raising a child with a disability plainly and simply, it contains much truth.

Perhaps several of you other NICU mamas or special needs mamas have also read this story, but for those of you who have not, I thought I would share it with you.

Welcome to Holland!

By Emily Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

 

It's like this . . . When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, "Welcome to Holland." "Holland?" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.

Just as Emily proclaims, "Holland" might not be where we thought we would be, but it has the most unexpected beauty!

Revelation of the Heart

Yesterday, through the mounds of tears, I had a true revelation of my heart.

It's probably been a long time coming and I'm not one (I don't think so anyways) to just spat out everything I'm thinking and feeling in regards to me and my life (not the deep down stuff anyways), but I know if I don't write this out and be honest, I will be able to cover my heart with false lies, justifications or simply not entertain what my soul is trying to tell me.

I was cozy in the recliner watching an episode of LifeCoach on the OWN channel (first time I watched this show) while Jocelyn slept peacefully on me. Truthfully, I was hoping it would be so boring that I too would fall asleep. Wrong answer. Instead, I found myself crying nearly uncontrollably about the reality of how I felt about our situation ... my life ... my future.

There is no doubt that Jocelyn is my world, my love, my life. I have never known love like the love I have for our baby girl. She is nothing short of miraculous! Even though I would give everything for her, it comes with a price. In a sense, I feel like I have given everything for her ... my entire life. In some form or another, all parents sacrifice their "old" or "future" life. Sometimes the reality of the sacrifice being given can harbour some sadness or even resentment. Your ideal life, and the reality of your true life, often doesn't match up. When you feel like there are more withdrawals from your life than the deposits you receive, its difficult to keep giving ... keep pushing forward ... and right now, the withdrawals in my life far out weight the deposits.

There is so much fear in my heart when it comes to Jocelyn. Sometimes I fear that we will lose her far too early and yet other times my fear shifts to her out-living us. That is what is suppose to happen ... children are suppose to out-live their parents. In our case though, I fear what that could mean for Jocelyn. You see, I'm looking at her right now, with all the "needs" she has, and trying to project what things will look like in the future, yet I truly have no idea. What I have to go off of is the fact that I can guess what they would look like if we can't seem to move forward or progress.

When Jocelyn was first born, I think Justin and I were consumed with fear ... so much was unknown. Life is always like that though isn't it? But once we were able to bring our angel home, we felt peace and hope. That first year of her life was definitely a honeymoon phase for us. We were ecstatic to have her home, waking up to her each day, falling asleep knowing she was with us, that she was eating, thriving and happy. As the additional weeks, months and year have carried on, that honeymoon phase has somewhat worn off. What I mean by that, is that reality has set in more. The reality that Jocelyn has far greater problems than you can possibly foresee in the beginning. I sometimes will say "it only takes one choking experience ... or a car wreck ... and anyone could be in this situation." Although true, I think sometimes I say these things to remind myself that this really could happen to anyone, like I need to hear that or something, that there are no guarantees, but in reality, it does not bring much comfort.

We've always been a step ahead of the game when its came to getting Jocelyn the diagnoses needed so we could get the necessary therapies and equipment to help her succeed. We quickly accepted her diagnosis on paper, jumped right in with routine therapy sessions, learned all we could, etc. But what didn't happen, was being able to step back and truly SEE the situation and how our life as individuals, as a couple, as a family ... would be so different than the typical family.

This is when fear easily swoops in like a thief in the night to rob you from anything good you are holding onto.

I have realized that by holding on to the fear, I will never ... NEVER ... be able to move forward as a mother, wife and an individual. Fear is so paralyzing, a stripper of joy and happiness, and a deceitful liar! God made us to be warriors and victorious!!

I am ashamed to admit that at times I wish I could just run away from it all ... pretend we didn't have all these problems and such a hard, different life. That I could pretend this was not my life. Sounds horrible doesn't it? But I think there are many that feel this way too but the guilt of feeling this way is often more than we want to share with anyone. Who wants to feel judged in your most raw moments ... no one. How can you love your husband and daughter SO MUCH and still think such things? Then something occurred to me. Sometimes it is our past that also makes us fearful.

You see, I think I feel even more remorse for having feelings like this at times because this is exactly what my birth mother did to me, my brothers and father. The fact that she was able to walk away from her family and never look back is proof that a person can do that. Does she feel remorse and pain? Perhaps. I thought a long time ago I had forgiven her but I don't think I have. I have always said "I forgive her but still want nothing to do with her." The reality is that I have the ability to forget and I think I've always viewed that as forgiveness. I have come to the conclusion that this is often the reason I can "get over things" so easily ... I just don't think about them ... or ... simply forget. But forgetting and forgiving are two totally different things. I'm fearful that I will become just the same terrible, awful mother that she was to me. Despite that I was given a spectacular mother to raise me and set the example I needed, something deep down feels like I've inherited my birth mother's bad traits, like they have been infused into me, so I fight those bad thoughts I have even more instead of facing them head on and not being ashamed.

In my heart and mind, I know that I am a great mother to Jocelyn, but your feelings can be deceiving. I've decided that since I've realized that feelings come and go so easily, I will demand my feelings to obey my heart and mind. No longer will I be a slave to fleeting emotions because they come and go in an instant, and they will not dictate the way I act and respond. I don't have to "feel" a certain way to know the truth of my heart. My "self-talk" will be one of truthfulness and positivity. I might not always be able to control how I feel, but I can chose how I self-talk.

I was sharing with Justin that until yesterday I didn't realize that I was sad and maybe disappointed that we would not be having any further children. There was a time in my life when I never wanted kids, but that was before meeting Justin. In the early stages when I was pregnant with Jocelyn, I remember thinking "yep, can't wait to do this at least another 2 or 3 more times." Don't get me wrong, Justin and I could have more children, but we won't, as we both feel it would take so much away from what is necessary to give to Jocelyn. She might love having a brother or sister, but we are not prepared to add another child into our family. We feel like it'd just be too much.

Even though I was brought to tears yesterday, it was good for the soul and I was actually able to put thoughts and words to what has been eating away at me, which something I haven't been able to do for quite some time. Sometimes its really difficult to know what is going on inside you, why you think a certain way or respond things.

I hope no matter what all of you are going through, that you truly do know that others have been there, and realize that there are others that have already pushed past that storm to the other side. I've realized that I am trying to reap and sow at the same time. I want to see the pay off for all the effort that I am putting into Jocelyn NOW!!

What's that saying "we want to eat our supper for breakfast?" Meaning, we often want now what is meant for at the end of our lives. If we have what is meant for the end of our lives now, what will be have at the end? I will continue to sow in our daughter, my husband, my family and friends because I believe the harvest will be plentiful. Sometimes its hard to believe that, but I know the promise God has given me ... given us!