Saturday, March 31, 2012

Another Miracle

We got some amazing news yesterday. Abby saw her thoracic specialist, who said that her ribs are continuing to calcify and that he doesn't feel like any surgery at all is necessary! He doesn't need to see her again until she is 4 or 5, and he doesn't feel that we need to put any limitations on her activities...she could even play soccer if she wanted to! (I think we'd better work on the standing first though!) :)

To give you an idea of how much of a miracle this news is, below is the very first image we have of Abby's ribs. 



This was taken about an hour after birth. 

Here is another image that was taken about a few weeks later, but is a little better picture of her ribs.




When we asked the nurse practitioner what the gaps meant for Abby's prognosis, and she gave us a helpless look and said she'd never seen anything like this.  She hung a "Fragile!  Do Not Touch!" sign over Abby's crib and everyone handled her with kid gloves.  As we received her diagnosis and realized how rare and serious her condition really was, we we were floored.  Matt and I cried over the little girl who would never get to dance or play with her brother, if she even made it out of the NICU.  If Abby did survive, we thought we would be facing multiple surgeries involving titanium ribs replacing her rib cage. 


Needless to say, this news is awesome!!!

Never give up hope, my friends! Our God is greater. :)




Clownin' Around


Abby wasn't really thrilled about putting the clown nose on her nose...

 ...so we put it on her other nose!  (The filter on the trach acts as a nose because it filters out the bad stuff and provides moisture to the airway.)

Don't worry, she could still breathe.  Although it appears that she was just hanging out wearing the clown nose for the show, in actuality, it was on for maybe 3 seconds.  :)






Friday, March 30, 2012

Painting a Masterpiece

Next to the guy engulfed in flames getting shot from a crossbow, meeting the elephant, Asia, was the highlight of the circus for Caleb.  He literally had a front row seat for this part during the pre-show activities, and it was so cool!!

Asia got her nails brushed and polished before the show.


She showed everybody her trunk and her costume.


Then she got right to work painting.  Yep, painting!!  She chose the colors and dipped the paint brush in the paint and everything!



This was her first masterpiece.  You enter your name in for a drawing and they give away her art work at each show.  Caleb was pretty disappointed that he didn't win.  Honestly, I think we have a couple of similar "masterpieces" hanging up on our fridge...


She started in on her second masterpiece....


...and was so proud of this one that she showed it off herself!


The trainer gave her an entire loaf of bread at one time as her treat.  She chewed it once and then swallowed!  You can see a tiny bit here, but it was gone in a flash!


I think that this was probably my favorite part.  I love when I'm up close and personal with the animals as they do their tricks!

Who Needs a Pacifier?!

Abby sucked on Baby Jonah's head like a pacifier and soothed herself right to sleep.  She does it allllll of the time!


I'll admit that this might make my kid a weirdo, but I kind of love that she willingly puts things in her mouth now.  For a long time, that just never happened.

So, you just keep right on suckin' on Baby Jonah's head, Abs!

Thursday, March 29, 2012

The Pre-Show


To me, the coolest part of the entire circus was getting to go onto the floor for the pre-show.  We were literally feet away from this woman practicing her routine up in the air!!


Then we were equally close to this girl holding onto this with a little loop around her foot...crazy!


Caleb enjoyed the clown routines.



This juggling act was fun to watch.  One of the girls asked Caleb if he wanted to try, but he wouldn't.  He'll be sorry he said no one day when he gets older and realizes what a cool opportunity it was!  


video

We also were very close to the elephant performing, but that deserves a post of its own!!!!  (It was Caleb's second-favorite part, after the cross-bow.)

Wednesday, March 28, 2012

Tuesday, March 27, 2012

Scrabble Tiles

In my old life, I used to make Scrabble tile pendants to sell at craft shows.  These are real Scrabble tiles with some sort of design attached to the blank side with a bail (pendant hanger thingy) attached.

Well, life is much too exciting these days to have time for craft shows, and my inventory has been sitting in their little storage boxes in our bedroom for the last year and a half or so.

Sooooooo, in an effort to raise some more money for RMH, I have decided to attempt to sell some of the pendants I have in my inventory.  Because of lack of time, I am sorry to say that I cannot do any special orders.  But I have a whole bunch of pendants in my inventory as it is, so there is bound to be something you would like!  You can click on this link to view examples of pendants I have made in the past.  Keep in mind that this is only for the pendants, and what you see on the website may not be one I have in my inventory.  If you see something you like, I might have the same or a similar print. Please email me at juliebleach@yahoo.com to discuss specific prints.

These make great gifts, and there are several gift-giving occasions come up:  Easter, Mother's Day, Teacher Appreciation Day, end-of-the-school-year, etc.  I do not have any chains available, but the bails fit on most simple chains.

Each pendant is $5 and you can make checks out to the Ronald McDonald House or donate online.  (If you donate online, be sure to let me know that it is for the pendants!)  If you are local and would prefer to pay cash, I will take it to the House on one of my many trips to Baltimore!

I will ask a small fee of $3 for all shipped orders that can be done through Pay Pal.  Local order pick-up or delivery can be arranged between doctors' visits and therapy.  :)

I'm not expecting this to be a huge fundraiser.  It's something I've been thinking about for a while and decided upon this weekend.  I figure if I sell two, that's $10 more dollars for RMH.  :)

Holland Sightings!

If you have tulips popping up at your house or have your camera when you're out and about, take a picture or two and send them my way!  I would love to do a Welcome to Holland post with lots of Holland Sightings. 

Or, if you think it's dumb, just ignore this post.  :)

Monday, March 26, 2012

How to Get an Abby Joy Button

After posting about the Abby Joy buttons yesterday, two people have asked how they can get one themselves! 

I hadn't even thought about it because we originally just made them for the team, but just in case anyone else is wondering...make a donation to The Ronald Mcdonald House and I will get one to you!  You can either give me the donation directly or click here to donate to our team page.  I will be going to Baltimore three times before the race and will be able to drop it off at the House.

If you're not local and want one, I will mail it to ya!  :)

Please...no pressure!!  I was hesitant to even put it out there because I don't want people to think I'm all like oh, buy a button of my little girl and wear it around!  But since people were asking about them, I figured I'd offer it to everybody.  :)

Running Away to the Circus

Last Thursday, we had the opportunity to go to the circus with an organization called The Starlight Foundation that provides fun activities for families facing complex medical problems.  We have been with them for almost a year now, but this was our first activity with them.  It seemed like our schedule just never allowed for us to go to any of the events, so we were really excited when we realized that we would be able to go to the circus!

Over 100 people from Starlight were there, and we took up two entire sections.  It was refreshing to be among others who have a clue what you're going through, and I have to admit that it was also nice not to have to deal with the constant stares for a few hours.

The ushers assigned to our sections were so sweet and accommodating.  We brought our mega-stroller in loaded down with all of the medical equipment (we were parked in a parking garage much too far away to get equipment in an emergency) and stored it on the landing of our section where we could see it.  (Hey, that's thousands of dollars of medical equipment!!!)  I had to go to the stroller for various things, so I was up and down the stairs a lot.  The ushers would shine the flashlight for me and offer assistance as I got Abby's feed ready, suctioned her, etc.  It was nice!

Caleb and Abby both loved the circus.  Abby enjoyed the music and entertained everybody around her with her dancing and clapping.  Caleb was thoroughly amazed with the guy on fire who was shot from a cross bow across the arena.  I got the whole thing on video and will be posting it soon!  :)  They both were very well behaved and handled the late night and out-of-routine evening quite well.  We were slightly afraid we would regret going and promised to leave as soon as we stopped having fun.  That really never happened, and we only left when we did because Abby was trying to fall asleep and couldn't.    They both really were awesome!

I can honestly say that this was the first "special event" we have done as an entire family...well, except for our mini-vacation, but Matt says that doesn't count.  It was really nice to take a break from our world of doctors, hospitals, nursing, and therapy and literally and figuratively run away to the circus.


I'm very thankful for Starlight and am excited to do more events with them in the future. Stay tuned for lots of pictures and videos from our adventure!

Tulips!

Welcome to Holland!  I'm lovin' my beautiful tulips popping up all over my yard!











Sunday, March 25, 2012

Joy Buttons and the Ronald McDonald House


My sister and I have been hard at work making buttons for The Joy Runners to wear while they are participating in the 5K to benefit the Ronald McDonald House!  My sister is a much better designer than I am, so she did the design and I made them into buttons.  I think they turned out pretty cute!

If you have been planning to join The Joy Runners and haven't registered yet, you need to do it as soon as possible.  According to RMH's Facebook page, they are nearing the maximum number of participants and will be closing registration soon--possibly today.  

If you can't join our team but would like to make a donation, we would greatly appreciate it!!  All contributions go directly to helping families at the Ronald McDonald House in Baltimore, not to pay for corporate overhead costs!  The walk is less than a month away, and we want to be able to raise as much money for our favorite charity as possible.  The House means so much to us and we are doing this as a way to say thank you to a wonderful organization.  

As always, we will also take any and all soda tabs you have!  Just save them in a little plastic bag or container and send them our way.  If you're not local, consider taking yours to the closest RMH in your area.  In case you don't know, RMH uses the money from the soda tabs to fuel the shuttle that takes families to the nearby hospitals.  As one who used the shuttle a lot going to and from MWPH, I can tell you what an absolute blessing it is!  Saving soda tabs is so easy, but it makes a big difference for families!!

Thanks so much for supporting us as we strive to raise money and awareness for The Ronald McDonald House!


Playing

Abby and Caleb had a good time the other day playing in their teepee!  


Of course, Caleb put the play tunnel up to the opening and crawled through the tunnel to get to the teepee, and then he started pretending to be a bad guy sneaking up to attack Abby in the teepee, and then somehow it became Star Wars themed...boys!!  :)

Saturday, March 24, 2012

Friday Funny

Caleb got changed into his pajamas, and this is what he put on...


Oops, I think Abby's pajamas ended up in his drawer!  

(What's most hysterical is that, except for the length, the pajamas fit my skinny boy just fine!)

Friday, March 23, 2012

Hello Kitty!

Have you heard about the Hello Kitty craze at our house?!?  :)

Here's Abby wearing a cute little nightgown her Grammy got her.  When I put it on her, she looked down and started pointing to Hello Kitty and smiling.  Then she got a glimpse of herself in the mirror and got really excited when she saw it!  It's not the best picture here, but it shows her nightgown at least!

You can hear Abby "say" Hello Kitty in the video.  She does it a couple of different times.  Gotta love her face in the beginning of the video too!

video

Thursday, March 22, 2012

The Little Girl

We're a little behind, but we finally planted a tree in honor of Abby's dedication.  Hey, it was within the year...that's not so bad, right?  

We went to our favorite local market/nursery because they were having a sale and I would much rather have my money going toward an awesome organic nursery and farm than Lowes.  After much hunting for the perfect tree for Abby, we settled on a Magnolia hybrid appropriately called The Little Girl.  It will grow to be only about 6 feet tall, which I think is perfect considering that Abby is destined to be little. I love the beautiful purple blooms!




We had an old holly tree that we needed to get rid of, so we got some help from a boy in the youth group with a much greener thumb than either of us!  After the tree was cut down, he started in on planting Abby's tree.  



Abby already points to her tree whenever we go outside.  If she's anything like Caleb, she will take a strong liking to her tree and will do anything to protect it!







Wednesday, March 21, 2012

Personality

Abby has so much personality!  Here are a few glimpses into life with my funny, sweet, sassy, stubborn Abby Joy!

*  During speech therapy, her therapist was trying to get Abby to touch something on her iPad.  She grabbed Abby's hand and Abby not only pulled it away, but crossed her arms in a defiant don't touch me move. 

*  When I took away something she wasn't supposed to be playing with, Abby started flapping and howling. She threw herself flat onto the floor face-down and smacked her head on the corner of her iPad's (very hard) protective case.  That'll teach ya to throw tantrums...

*  We went to Walmart last night to  let Abby pick our her own big girl toothbrush.  As we went through the little girl's clothing area, Hello Kitty was everywhere!!  Every single time she saw The Kitty, she would smile really big, "say" (hum the syllables) Hello Kitty, and clap.  It is so darn cute!  Guess what kind of tooth brush she picked out???  (We also found her a HK Thermos water bottle to practicing drinking from a straw!!)

*  If Caleb is lying on the floor or the bed, Abby is right on top of him, playing Whack-a-Bubba!  That's a little game she created when she whacks Caleb on the head and they both laugh hysterically.  She's getting a lot stronger, so I'm not sure how much longer it will be funny to Caleb!  The girl can hold her own when she is wrestling!

*  Yesterday, Abby managed to pull her trach out by pulling at one of the velcro ties.  I heard what I thought was her filter hitting the ground behind me, but I was facing away from her fixing dinner.  I asked Caleb to put it back on for me, and then I heard, "Oh my!  I don't know how to do this, Momma!"  I turned, saw what had happened, and hurriedly put it back in with my heart racing.  Caleb was notably scared and kept saying, "I'm so glad she survived!" over and over again.  And all the while, Abby's just sitting there with a What's your problem? look on her face.  She didn't seem the least bit concerned!  Let's hope she doesn't do it again!

*  Abby is loving food now.  She has become quite a little beggar and will often crawl up to me when I have something to eat and start grabbing for it.  The other day, she wanted the salsa-flavored Sun Chips I had, so I figured she could lick it.  I gave her one and told her to lick it (she's really good at following the directions we give her for eating!).  She did, and then made a terrible face and threw it at me.  Welp, guess she doesn't like spicy foods!

*  Her new favorite game is to try to dump her bowl of baby food while we're trying to feed her.  The goal is to knock the bowl out of your hand and get as much of it on your shirt as possible.  Sometimes she succeeds!  I've started saying/signing, "Ok, you're telling me you are alllllll done.  That's fine.  All done!" and I put it away.  Then she gets mad, so I remind her not to hit her bowl if she wants her food and attempt to feed her again.  We usually cycle through this a few times before either she settles down or I really do put it away for good.  There are days when I feel very much like Annie Sullivan dealing with Helen Keller. :)

I hope you enjoyed a few personality glimpses!  That girl is a firecracker!!

Tuesday, March 20, 2012

A Little Perspective

My favorite sister brought me some beautiful tulips the other day.  I put them on top of a little cabinet so that they could be seen right when you walk in the front door....just under our JOY sign.  


I like to think these tulips greet everybody with a cheerful Welcome to Holland!


Monday, March 19, 2012

Medical Update

We've had a lot going on in the medical department, but I just haven't had a chance to blog about it. Here ya go!

Ears:  Poor Abby had another ear infection about two weeks ago, (this is #6 post-tubes, if you're counting) and the ENT now has her doing some heavy duty ear drops for the next 2 months to try to kill whatever it is that is in there.  6 infections in 6 months seemed like a lot to us, and ENT agreed.  They're hoping that these drops will take care of it once and for all.  I've also learned that cleft palate ear canals are shaped differently than those without a cleft, so the tubes don't always fit the right way when they are little.  Apparently, the ear canals fix themselves over time, but it's not uncommon for cleft palate kids to have more ear infections with the tubes.  Who knew?

Trach:  Abby had what appears to be a skin infection at the trach site, so she has been on a cream for that. It created a dimple near her trach site, which caused a problem when we changed her trach.  The ENT seemed to think it was from an infection, so that's how we are treating it.  We have an ENT appointment in May, and he wants to look at her airway again to see how it's grown. Let's hope it's bigger!!

G-Tube:  Last week, Abby's G-Tube stopped turning and we couldn't get it to come out.  GI was pretty concerned and had us come in right away, so I ended up having to leave work early.  We went to JHH and  the GI nurse was finally able to remove the g-tube...but not without a lot of pain.  Poor Abs!  :(  The length was too short and it had gotten stuck in the tract.  I'm thankful we avoided surgery!!

Pulmonology:  We had an appointment at the beginning of March and she feels like Abby is looking really good.  Abby is doing the nasty nebulizer (the one we have to try not to breathe in) this month--she's on a month on/month off schedule--and we're hoping that it keeps her healthy.  She "should" be going in for her vent weaning in June.  This is the same vent weaning that she "should" have had in December, and then February, and then April...and now June.  I'm not holding my breath!

Eyes:  We've noticed over the last month or so that Abby's eyes have been drifting inward more and more--especially the left one.  Until recently, it would only drift if she was really concentrating on something.  Now the eyes seem to drift just when she's looking at me.  Other people are noticing it a lot more too, so I felt like it was a real concern and not just an overprotective mom issue!  She didn't have an ophthalmology appointment until June, so I called and was able to get it moved up to March 15th.

We got some good news!  Her optic nerves are officially normal, so the specialist no longer has any concerns about them!  Woo hoo!  The drifting eyes are an optical illusion because she has a wide bridge between her eyes.  It does look like they are drifting, but they're not. and he taught me a little trick using photography to check and see if her eyes are drifting.  Good to know!

Abby is pretty significantly farsighted, and he was debating whether to give her glasses when she chucked her filter across the floor.  :)  He decided that she has enough going on right now with everything else and he is hoping she will grow out of the throwing stage in the next 6 months!  We're working on it.... :) We're expecting for her to get glasses when we go back in September.

Completely unrelated, poor Abs also got Pink Eye from Caleb a few weeks ago.  :(  Our pediatrician even put her on an antibiotic (for an ear infection!) that would hopefully prevent the pink eye as well, but to no avail.  I have to say that Abby was much less dramatic about the drops than Caleb!  I'm hoping that the Pink Eye has officially left the Leach household!

We have a whole lot of appointments coming up in April and May, as these are all of the "six month follow-ups" to the multitude of appointments in October!  During the next month and a half, Abby will see the palate surgeon, a pediatric dentist, the thoracic specialist, the audiologist (hearing test), the pulmonologist, the opthamologist, the ENT, and GI.  I sure hope gas prices drop before April, because it costs us a fortune to go to JHH every week!  I guess that's the price you pay to go to the #1 hospital in the U.S.!  I'm so thankful for JHH!

Sunday, March 18, 2012

Waking Up Thankful

Our main night nurse commented a few weeks ago that Abby is one of the happiest wakers she has ever seen.  It's true!  The girl throws opens her eyes, bolts up to a sitting position, and starts clapping, smiling, and giggling.  Our nurse said it's like she's just happy to be alive and thankful that God gave her another day.

I have to admit that my wake-up is not quite so...peppy.  My alarm goes off, I groan, and hit snooze 2 or 3 times before I finally resignedly force myself to get out of bed.  I'm not sure I've ever clapped and giggled upon waking.

You may not be much of a morning person either, but I think we could all learn something from Abby!  I can honestly say that I don't often wake up thanking God for another day.  Since our nurse brought Abby's "Morning Gratitude" to my attention, I've been trying to do that more.

So while you may not clap and giggle when your alarm goes off, join Abby and me in thanking God that He has allowed you to see another morning.

Saturday, March 17, 2012

Brave, Beautiful Brooke

Over the past 8 months or so, I have the pleasure of knowing Brooke Shockley, a beautiful teenager with Osteosarcoma.



I met Brooke at the Ronald McDonald House and she is one of the most mature, positive teenagers I have ever known.  She truly does choose joy, even though she is going through more than her share of trials right now.  To know her is to love her, and boy does everyone at RMH love her!!  I can't wait to see her again at the 5k next month.

A few months ago, an organization called Music Is Medicine (run by two incredible teenagers, I might add!!) arranged for Drew Seeley to write a song just for Brooke.  He actually came and performed it at JHH for Brooke and some of the other patients there, and the song just came out on iTunes.  All proceeds go to Pediatric Cancer Research at JHH, and it's all because of Brave, Beautiful Brooke!

You can hear the song and "get to know" Brooke a little through the video below.  But I'd encourage you to buy the song on iTunes to support kids like Brooke!

Friday, March 16, 2012

A List of Abby's Signs

When people ask how many signs Abby has, I usually say about 20.  Truth be known, I'd never counted them all up.  The other day at the JHH specialties clinic, I ran into an amazing 13 year old I know who is staying at the Ronald McDonald House.  He'd never met Abby, so he was asking some questions about her.

Side note:  I LOVE the innocence of kids:  "What's that thing on her neck?"  "So, does it just go around her neck, or does it go inside of her?"  "Is she going to get better?"  I wish adults would just come out and ask those questions, rather than staring!  I eagerly answered all of his questions in kid-friendly terms loudly enough for the gawkers nearby to hear.

The boy saw Abby sign "more" to me and asked how many signs she had.  About 20, I replied.  Then he asked what signs she knew.

Hmmmm.  Her nurse and I started listing some...and we realized that she had a lot more than 20!!

Over the past three days, I've kept a list in the kitchen of all of Abby's signs.  I started out with 24 that I could think of off the top of my head and it has now grown to 39!

Here are Abby's signs:

Thank you
Please
More
I'm sorry
Puzzle
I love you
Dog
Cat
Clean up
Walk
Stand
Dance
Again
Touch
On
Off
Yes
No
Bubbles
Momma
Daddy
Caleb
Mine
Abby
Go
Baby
Eat
Music
All done
Want
Wait
Stop
Jesus
Amen
Up
Down
Wash hands
Fish
Fan

That's a lot of signs for a girl who's not quite 17 months!  She's learning about a sign a day now, so I'm sure that list will grow rapidly.  Go Abs!

Thursday, March 15, 2012

Praying

Caleb prays before each meal. If you've never experienced a Caleb Prayer, it goes a little somethin' like this:  "God is great and please help Mommy and Abby feel better.  Amen."  He's been praying that since I went into the hospital with Abs in September 2010.  I'm never going to get sick again!

Recently, we've starting having Abby pray after Caleb.  We want to include her and Caleb started to work on praying about this age, so we figured, why not?

We started out modeling the signs for "Thank you Jesus.  Amen." because we figured stringing those three signs together would be plenty for Abby right now.  After a day or two, she started mimicking us.  Then I started just saying the word and she would sign it.  Now, I start her with thank you and she does the rest.  She knows that as soon as Caleb prays, it's her turn!

The best part is the huge grin that spreads across her face when it's time for her to pray.  Her favorite part is the amen, which is supposed to be a "thumbs up" on the palm of your other hand.  Abby's tends to be a huge, excited wave/flail of both hands...which is equally appropriate, given the meaning of amen. :)

Oh, you want to see her praying?  Okay!!  :)
video

Wednesday, March 14, 2012

6 Things You Don't Know About a Special Needs Parent


I read this article the other day after it was reposted by Moms of Miracles, a group I belong to.  I found myself nodding and uh-huh-ing a lot, so I shared it on Facebook.  Several people commented on it, and a few others shared it themselves, so I figured it might be blog-worthy.
In addition to sharing the article, I wrote a few of my own comments.  They are in red so as not to confuse anyone!
----
About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3 year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.

2012-03-09-images-mejacsubwaysmall.jpg

Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
For me, the constant tiredness is from the constant worrying about germs.  This may sound silly to you, but that's probably because you don't have a child with a compromised immune system.  It is always in my mind because the harsh reality is that a cold could kill her--and nearly did.      People just don't get this.  I am constantly on guard and sometimes get knots in my stomach thinking about the "could be" germs.  Please don't get offended when we ask you to wash your hands or use hand sanitizer before touching Abby.  We are just looking out for our girl.  We want people to get to know her and spend time with her, but we have to take some precautions.  


The paperwork, phone calls, and doctors' visits are also fairly taxing, and I have a dry erase board where I keep of list of what I need to do and who I need to call on which day.  It gets really complicated when you have to call multiple doctors for updates on different things on different days!  Sometimes I start giving an update to the wrong specialist!
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1 year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
This one is hard.  I am learning that these feelings never completely go away.  Sometimes, I'm perfectly fine watching kids younger than Abby do things she can't do because I have hope that she will get there eventually.  Other times, watching a baby gnaw on a cracker or take some teetering steps is enough to push me over the edge.  While the vast majority of friends and family have been incredibly sensitive about this (thank you!!), we have also had our share of hurtful comparisons.  And those suck, to put it bluntly.  I am proud of how far Abby has come and she is doing things in her own time, but hearing her being compared to other kids is painful.  I'm well aware of what she should be doing. 
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2 year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.  I really am thankful for a mom and dad who are always looking for ways to help, who will come to my house at any hour of the night to watch Caleb when we have to go to the hospital unexpectedly, and who have tried so hard to learn as much as they can about Abby's care....and for a sister who has become my best friend, who loves me even when I fall apart and will do anything she can to make my load a little lighter...and for my extended family members who have driven us to doctors' appointments when the nurse called out at the last minute or who came over to help when Matt is gone...and for my closest friends who have loved me so well through the tough days....and for a group of Trach Moms--most of whom I've never met--who can relate to what I deal with on a daily basis and offer up a kind of support that others just can't.  


Yes, it can be very lonely and I don't really feel like I fit in at most social gatherings (I've found that saying the words trach and ventilator are excellent conversation stoppers!)...but I really am very blessed.
4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)  You know how I feel about the R word, so I'm not going to go there.  The "as long as it's healthy" comment is certainly well-meaning.  Who really wishes for a baby with a life-threatening illness?  I am sure I have made similar comments, but my prayers quickly changed to "We'll take her any way.  Just let us have her!" when we realized how serious Abby's diagnosis was.  While I don't visibly cringe or anything when someone says this, I do kind of feel like that statement diminishes Abby's life and worth because she's not healthy.  Even if your child isn't healthy, you'll make it.  And you'll be forever changed because of it.  
5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...I have heard that you get tiny little pieces of your life back eventually.  I'm still waiting for that time!  :)
6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.  I try hard to share the "small" victories so that people see that Abby is way more than her medical diagnosis.  That way, I usually do have a lot to talk about when I see people face to face!  :)  
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed.  So true.
~By:  Maria Lin

Tuesday, March 13, 2012

Sweet Little Habit


My dear, sweet Abby has gotten into the habit of cupping my chin in both of her hands very gently and giving me a cute little smile to say "good night" before I put her in her crib.

Melt. My. Heart.

Monday, March 12, 2012

testing


 Just testing out an email feature!  Talk amongst yourselves!
Julie Leach

If All Goes Well...

...Abby will be getting her iPad (for communication) tomorrow!  It will be a while before she is actually using it, but we will begin modeling "speech" for her right from the start.  I'm excited for this next phase and think it will be a great way for her to communicate with other kids on her own without having to rely on one of us to interpret the signs she does.  Yippee!!!  :)

**Be on the lookout for videos of Abby using her iPad!

New Shoe Drama

I'm a wear-your-shoes-until-they-fall-apart kind of a girl.  My sister, the shoe queen, hates that about me.  She also feels like I take the comfort over style idea to the extreme and has banned me from buying anymore Crocs or Sketchers for work.  :)  So when my trusty Crocs finally died on Monday morning when I put them on to go to work, I put on my brown loafers only to find that walking in the snow we had that day wasn't so wonderful because the holes in the soles caused my socks to be soaked!  Since both of my go-to shoes were now in shoe heaven,  I caved and decided it was time for some new ones.  I think my sister cheered.

So we all drove the hour and 15 minutes to the "big mall" (yes, we live that far away from one!) and I actually found two very cute pairs in one store.  They would have been Amy-approved, too!  :)  Despite the fact that they weren't cheap, Matt convinced me that it would be worth it since I wear them out anyway.  I bought both, wore one pair out of the store like a giddy six year old excited about her new shoes, and then went to a few other stores.  When we got home, the bag with the other pair of shoes was nowhere to be found!

I was...upset...and threw the phone book across the room handled my anger and frustration in a mature and calm manner.  Matt considered mentioning that perhaps this is where Caleb gets his anger issues from, but thought better of it.  Good call.

I found the mall directory and called all of the stores we went to.  None of them had seen the bag, but they took my name and number.  Well, all but Journeys--they refused to take my information!

When I hung up with the last store, I really broke down and was just so upset that I spent a lot of money on a pair of shoes and basically just threw it all away.  I tend to beat myself up when I am irresponsible, so there's no need for anyone else to say anything.  I am my own worst critic.  Matt asked if I was sure I called every place, so we went back through our mental list.  Gymboree!  I forgot to call there!

Imagine my relief when the sweet girl who had helped me earlier that day told me that the bag was there!  She said she knew exactly whose they were and tried to look us up in their system, but couldn't find a phone number.  Thank you, sweet Gymboree sales clerk!  You saved my shoes!

My feet are now happy in my new Amy-approved shoes.  I hope they last as long as my Crocs!  :)

Saturday, March 10, 2012

Spread the Word to End the Word

Wednesday was Spread the Word to End the Word...as in the R-word I hate so much.  I didn't blog about it on Wednesday, but I did share a few links on Facebook and have definitely blogged about it in the past. Honestly, I don't care if you go and sign the petition...just don't say the word.  It is offensive, even if you don't mean it that way.  Why use the word at all?

Love That Max's Ellen did an awesome video about her son Max I wanted to share with you.  I hope you love it...but more importantly, I hope it helps you see that there is a child behind the name.

Spread the word to end the word!

Sippin' Cider Through a Straw...

Anybody know that song?  It's an old camp song that I learned as a kid.  And it's what Abby has been doing a lot of recently!

The other day I decided to be an extra nice momma and give Caleb a juice box--we are water and milk people, but I had a few left over from his birthday.  Abby seemed interested in it, so I figured, why not?  I'll try it!

I squeezed it in the first few times so that she could get the taste, but then once she decided she wanted it, I made her suck it through the straw herself.  She got a little angry at first, but she quickly learned!

Once she mastered that, I tried several different water bottles.  She really liked the Thermos bottle, which was much like this Hello Kitty one:  
Except that it was Toy Story, not Hello Kitty.  Caleb wouldn't dare let her use his Star Wars one.  That's sacred, apparently.  I need to get this girl her own Hello Kitty water bottle!  

Side Note:  We have a lot of water bottles in our house, and Caleb has gone through quite a few himself.  I like the Thermos brand for a number of reasons:
1.  They don't leak (they really don't!!)
2.  They are stainless steel, so mold doesn't grow as fast and they don't smell
3.  They are dishwasher safe and the pictures on the outside look as good as when I bought them
4.  The straw is silicone, so little biters won't chew up the straw
5.  Everything comes apart for washing and is easy to put back together
6.  Did I mention they don't leak??  This is my biggest issue with water bottles!

Back on track!  Abby has decided she loves drinking from a straw, and will sip quite a bit!  She hasn't had a swallow study yet, but we're hoping that May's feeding therapy appointment will bring us the good news that she is ready for one.  I think she is, but I'm not the expert.  

Here's a video of her drinking from a straw!

video





Friday, March 9, 2012

My Children Love Boxes...and Fighting Over Them

Seriously, why do I buy toys??  

Abby went right to the Amazon box I had just unpacked and motioned for me to put her in it.  If I had taken a video, you would have heard her giggling hysterically over sitting in a box.

That is, until Caleb wanted to join in the fun.  Then she got a little unhappy.  He's driving a boat here, but she seems a little unsure of his driving capabilities.  Hold on, Abby!


Then she started looking at our nurse as if to say, please get me outta here!
Note the lack of room Caleb is giving her as he tries to convince her that she really doesn't want to play in the box.


Abby starts getting mad.  Caleb tries to make it up to her, but the damage is done.


Doesn't she look utterly defeated here?!  Sigh, he won the box.