Thursday, May 31, 2012

Tara Peddicord Photography

We got the disc in the mail from our photo session!  If you missed my first post about it, Tara is a friend of ours from waaaaaaay back.  She was actually a camper when we were counselors at the camp where we worked, which makes me feel very old.

Now she's all grown up, and a fantastic photographer!  Check out a few of my favorites, and be on the lookout for a few more posts over the next couple of days.  :)

If you're local-ish and interested in having Tara photograph your family (or wedding!), click on the link above to visit her website.  She's really nice and fun--promise!

Family Photo

Abby loves kisses from her momma!

Caleb and Daddy

I hope this makes you smile :)

Wednesday, May 30, 2012

Surgery Tomorrow

Very quick update, because I'm behind on my work for school and need to catch up a little!  Abby will be having surgery tomorrow @ 1:30 to check out her airway, get rid of any scar or granulation tissue, and try to figure out what's wrong with her ears.  It will be between 90 minutes and two hours.  We'd appreciate you remembering Abs tomorrow!

In other, but related, news...Abby got sick tonight immediately after her 4:00 feed.  She seemed otherwise fine before and after, so I'm hoping that she just ate too much.  I didn't give her any solids for dinner, but she's tolerating her overnight feeds fine so far.  I'm hoping it was just a one-time thing....and that it doesn't affect her surgery tomorrow!  I tried to call, but the ENT office was closed.  I'll call tomorrow morning to ask, just in case.  I really don't want to go all the way up there just for them to say they can't do it.  Pray for that too, please!!

Wordless Wednesday

Tuesday, May 29, 2012

Preschool Graduation

Here is where I bore you with all of my Proud Momma pictures of Caleb's preschool graduation.  Love it or hate it.  Either way, I'm sharing them!  

After a pot luck dinner, everybody watched a slide show.  I took pictures of a few of the photos of Caleb.

Why am I not surprised that there are so many pictures of him building with Legos?

This is hard to see, but they are inside of this huge "space bubble" made out of trash bags and blown up with a big fan.  He's dressed in astronaut gear, complete with soda bottle oxygen tanks!

The kids were taught to line up to receive their diploma with their right arm out and their left arm behind their back.  It was hysterical to watch them!  Note the progression of the kids here in these next few...

Yeah, not a single kid is doing what he/she is supposed to be doing now!

My graduate...sigh!

His arms went back into position for the handshakes! 

receiving his diploma

Caleb gave each of his teacher spontaneous hugs on stage.  Melt. My. Heart.  The boy can be so sweet!

The graduating class of 2012! 

Several times on the way home, Caleb commented on being "a little sad" that preschool is over.  He is definitely a sentimental boy, and he said he's going to miss his teachers.  He got his sappiness from his momma!

Monday, May 28, 2012

Clothes Pins Magnets

I give a lot of gifts to teachers, therapists, and our nurses.  I believe in the power of a thank you note and a little thinking of you every now and then.  As a teacher, I know how much it means to me when someone remembers the job I do.  Teachers (and therapists and nurses!) work super hard for not a lot of money, so I think it's important to say thank you...and often!!!!

Thank you, Ms. Nancy and Ms. Karen!!

Thank you, Ms. Katie and Ms. Amy!! 

For an end of the year gift for Caleb's teachers, I made each teacher a set of clothes pins magnets.  I originally heard the idea when we made them at MOPS, but I decided to keep the ones I made!  :)  

Most of these were made with craft supplies I already had.  I did buy some ribbon so that they looked more like a set.  

The cool thing with these is that Caleb was able to help with them.  He picked out the ribbon color and the flowers for each one, although I did veto a few that just didn't quite match!  I'm not quite ready for him to use the glue gun yet, but he did pretty much everything else.

I really like the sunflower!  That was completely Caleb's idea!

Yes, I am quite aware of how terrible these pictures are.  Sorry!  These are the packages with the magnets clipped to a note that says "Here's ho'pin' you have a great summer!"  I also included a gift card.  :)

Another fun, crafty gift idea!

Sunday, May 27, 2012

Abby's Words

Here's a running list of Abby's growing vocabulary!  The words with the stars are ones she uses in conversation.  (I love that I can really have a conversation with her now!!)  The others are words that she can repeat pretty well, but hasn't started to own yet.

Momma *
Daddy *
Bubba * (This is what she calls Caleb, for now)
ball *
no * (This sometimes comes out as "Nein," which is German for "no."  She's bilingual!) :)
cat *
bye-bye *
flower * (This one surprised me!  We were walking up the steps when she stopped and pointed to a flower arrangement on the cabinet below, and said "flower!" I had no idea she knew that word, but now she points to the arrangement and says it every time we walk upstairs!)
bubbles *
hi *
Nina * (what my mom goes by)
Paw Paw * (what my dad goes by)
Owen *
Abby *
night-night *
kitty * (as in Hello Kitty!)
pop (I haven't been able to figure out if she owns this or not--she says it when the bubbles are popping, but it's always after I have said it.)
yeah *
good job* (She cheers for herself when she does something she thinks is good--complete with clapping, squealing, and a hearty "good job!"  It doesn't really sound like the real phrase, but it's consistent and I know what she is saying.)

Aren't you proud of her?!?!  This girl is amazing.  AAAAAAAND, she has been eating consistently around 250 calories a day since I started counting calories!!!

Before and After

Caleb's very first day of preschool:  September 2010

Caleb's very last day of preschool:  May 2011

Same hair cut, same striped shirts, same backpack, but a very different kid!!  

Goodbye preschool, hello kindergarten!

Saturday, May 26, 2012

Swallow Study Results

Remember yesterday how I said I've been insanely busy?  Case in point.  I started this post on the DAY of her swallow study, and am just now finishing it.  I had to change some of the wording because I'd intended to post it the day of her study.  At least I have a lot more to write now!


Abby had a swallow study done last Monday to see if she aspirated (inhaled in her lungs) food when she ate.  We haven't been able to do a study up until now because she didn't eat enough to be able to do the study.  After months of work, she was finally ready!!

A swallow study is basically an xray while she is eating.  She sat in a high chair sandwiched between two parts of the xray machine.  I fed her barium mixed with baby food, and she drank some barium mixed with yogurt and a Kool-aid packet.  The trick is to keep her still and looking right at me during the study so that they can get good pictures, which is no easy task with an 18 month old!

We walked into the room where the study was going to be done, and Abby immediately burst into tears.  I was convinced this was it and she wasn't going to do it!  We calmed her down with a whirly toy that lit up and made noise, and that entertained her while we got her in a gown and set everything up.  After that, she was so hungry that she was very willing to eat!  In fact, she signed "more" after we finished and reached for the bowl!  Barium:  yum... :)

So what were the results?  Well, she passed with flying colors!  She is now approved to eat purees (baby food, yogurt, smoothies, milkshakes, etc.) and thick liquids (yogurt drinks, Boost/Pediasure, etc.). This is awesome because we can now work toward eating for nutrition...which brings us one HUMONGOUS step closer to getting rid of the gtube!!!

We're now learning how to measure everything she eats and count every calorie.  I add butter, heavy whipping cream or cream cheese to everything she eats, and also buy the full-fat yogurt. I document the amount of calories of the food by itself, then write the amount of each "add-on" and the number of calories.  For example, 1 ounce of apples is 20 calories by itself.  1/2 tablespoon of butter is 50 (!!!!) calories, and a teaspoon of rice cereal (because the butter makes it too thin) is 10 calories.  So that 1 ounce of apples has gone from being 20 calories to 80, just like that!  :)

Abby needs to eat 3 meals and 2 snacks a day, which is no easy feat when she is also getting 3 gtube feeds during the day.  Each meal is 20 minutes, snacks are 10 minutes, and gtube feeds are 30 minutes.  Our feeding schedule is:

7:30 breakfast
8:00 gtube bolus feed
11:30 lunch
12:00 gtube feed
3:30 snack
4:00 gtube feed
5:30 dinner
6:30 dessert (snack)

She's pretty much eating the entire day, which may sound awesome to most of us, but it is hard for a little girl who hasn't done a whole lot of eating in her life!  She is participating in every meal though, which is a very good start.  We will work up to the calories she needs, but I'm really proud of her progress so far.

We will be weighing her often because we are hoping that the increase in solids will allow her to gain enough weight to cut one of her feeds.  I'm really working hard to make sure she is getting a balanced diet so that GI sees that it is a healthy weight gain and not just from ice cream!!

Thursday, Abby consumed 270 calories by mouth.  Friday wasn't as great, but we still managed to get 172 calories in her.  Each gtube feed is 120 calories, so I hope she keeps it up!  I am documenting everything in huge, organized detail so that I can take it to GI and show them exactly what I gave her, how much she ate, and how many calories she consumed.

This takes a tremendous amount of time and I have been tweaking my system a little each day.  I welcome any suggestions to make the documentation a little more manageable!  I got a free app that was highly recommended on the feeding tube support group I'm on, but she doesn't mean the minimum weight requirements.  It's really a weight-loss app that you can use for weight-gain, but I guess the app makers don't consider 20 lbs 15 oz overweight.

We're very excited about this new challenge, but it certainly is a challenge!!!

Friday, May 25, 2012

Medical Update

Next Thursday, the 31st, Abby will be having a bronchoscopy.  This is where the ENT takes a look down her airway to see how it's growing and look for any scar tissue, granulation, etc.  We're hoping for good results.

In other, but related, news, Abby had another ear infection last week.  Ugh.  This is #8 since tubes, if you're counting.  Thankfully, we were already going to ENT the very next day after her ears started bleeding, and he confirmed the double infection.  NOTE:  this is after TWO MONTHS of heavy-duty ear drops, that we had just finished 4 days before.  The ENT swore that these ear drops would kill everything once and for all.  Hmmm...

So, back on Ciprodex is Abby.  She is so tired of ear drops.  These drops will carry us until the bronchoscopy, where the ENT will also be taking a look in her ears.  He suspects that the tubes are misplaced or that there is granulation around them.  Unless the tubes look absolutely perfect, he is going to take them out and give the canals a little time to grow.  We were warned at our first consult that palate kids often have weird ear canals, and Abby's are even weirder than most, so the one-size-fits-most tubes that are put in may not work for her.  It doesn't appear that they are.  I'm actually kind of glad she had this last ear infection that pushed our ENT over the edge he'd been teetering on.  I'd been thinking for a while that something wasn't right, and it makes sense to check out her ears while she is already under anesthesia.

The bronch and tube removal will take about two hours.  Her surgery is scheduled for 1:30, which will give the OR lots of time to get overbooked and delayed.  I do oh-so-love hospital time.

Bonus:  the surgery will be in the brand-spankin' new children's hospital of JHH, and it is BEAUTIFUL!  We went in for the first time for Abby's swallow study, and it really is amazing.  Plus, peds ENT has its own maybe it won't be so overbooked after all!

I would certainly appreciate prayers, although this kind of thing is pretty run-of-a-mill for us.  We're hoping for a nice, clear scope of the airway with a report that it is GROWING and CLEAN, and that there is NOTHING that will get in the way of Abby's final vent weaning!!

So much to blog, so little time!!!

I have SO much to blog about.  Life has taken over, and I just haven't had any time.  It seems like every aspect of my life is VERY, family, medical, education, etc.  Woooooooo!  Summer is so close I can almost taste it, and then life will slow down and I'll float in the pool with my laptop and blog the day away.  Riiiiiiiiight...

Stay with me.  I've got lots to share, with very little time to share it!  I promise, I will though!!!

Wednesday, May 23, 2012

Imagination Movers Photo Recap

Seriously, The Imagination Movers were so much fun!  They played lots of their own music, with some classic rock mixed in for the adults.  There were also quite a few jokes and references to Baltimore, which was kind of fun.  

The whole night centered around this robot named Rock-o-Matic, or "Rocko."  

This is Mover Scott, and he wears Wobble Goggles that help him see new ideas.  Caleb and Abby have a pair of goggles too.  :)

There are 4 main Movers that are part of the TV show, but they have 2 extra movers to play instruments and do back-up vocals in their live tour.

Abby finished up her feed before the show started so that she would be free to dance!

My dancing queen did NOT want to sit in my lap.  The row in front of us was empty, and that is where she stood almost the entire show--dancing the night away.

My Imagination Movers 

Caleb did his share of singing and dancing too.  He knows most of the words to the songs, so he was having a great time singing along! 

You can hear a little of "The Mother in You," a special song for Mother's Day.  :)

The whole concert was fabulous, and the smiles on my kids' faces were worth every penny.  It was definitely one to write down in the memory book.

Tuesday, May 22, 2012

Talkin' Up a Storm!

Here's little sampling of some of Abby's words.  Keep in mind that she is 19 months old and I  am an extremely amateur videographer, so the video is less than stellar.

Monday, May 21, 2012

Hey Mr. DJ...

Abby and Caleb were gettin' down at the Imagination Movers concert!!

Saturday, May 19, 2012

A Great Surprise!

On May 11th, Caleb was given a great surprise as a preschool graduation present:  tickets to an Imagination Movers Concert!  Matt picked him up early from Mom's Morning Out, saying we had to take Abby to the doctor.  We listened and sang along to the IM CD the whole ride to Baltimore.

When we got out of the car, there were two little boys wearing Imagination Movers jumpsuits.  Caleb pointed them out, but didn't think anything of it.  We went into the theatre (which looks nothing like the doctor's office!), looked around at the long line of kids wearing IM shirts, and he never caught on!!  See his shocked response below!

I have lots more pictures and videos to share about our Imagination Movers adventure!

Friday, May 18, 2012

You Might Be a Trach Mom If...

In honor of Tracheostomy Awareness Week, I have written a little list of some "givens" if you're a trach mom.  Enjoy!

You might be a trach mom if...

*  You have ever looked into a trach tube to check for a plug and got secretions shot at you.
*  You can change trach ties while talking on the phone, holding the trach in with one hand, entertaining your trach child, and disciplining your other child all at the same time.
*  Your child and family have ever been stared at, pointed out, gaped at, or flat out laughed at...and are stronger for it.
*  You take your child to OT, PT, and Speech every week...and are the OT, PT, and Speech teacher the rest of the week!
*  You require everyone who walks into your house to wash their hands before touching your child.
*  You have ever been asked to leave a public place because the suctioning is too noisy or is disturbing other patrons.
*  Your supply company knows who you are by your voice.
*  Other people wonder how in the world you do it, and you just smile because there's a whole lot more they'll never understood.
*  You've ever thanked God for just one more day with your child.
*  You spend more time traveling to doctors' appointments than you do at your own house.
*  If the terms oxygen saturation levels, tracheal obstruction, chronic lung disease, and accidental decannulation actually mean something to you!
*  You juggle a schedule whose craziness is comparable to the president's, but your house doesn't come with secretaries.
*  You are fiercely protective of your child and will do whatever it takes to help him/her succeed.
*  Your child is a superhero!

Thursday, May 17, 2012

Happy Tracheostomy Week!

I haven't had a chance to post anything about Tracheostomy Week yet, but here is a video that was created for it.  I LOVE it!

Just remember, kids with trachs want friends, want to laugh, want to feel success, and most importantly--want to be loved.  It's just a different way to breathe, people!  It's not that big of a deal!  :)

Wednesday, May 16, 2012

My Life is Not Boring

Nope, no one can ever use boring to describe my life!

Here I am, tonight, watching Anna for a little while.  Everything is going so smoothly and the girls were playing really well in the playroom.  I take them upstairs for bath time, get Anna undressed and into the tub, then turn to take Abby's clothes off.  I notice her shirt is wet, but didn't think anything of it...until I put her in the tub and thought, something is missing!

Her g-tube was out, and I had no idea how long.

Now, the g-tube coming out isn't life-threatening like the trach coming out, but the hole does close up very quickly.  You don't have a lot of time to get the tube back in, and I had no idea how long it had been out.  It could have been up to 2 hours, since I disconnected her last feed.

I turned the water off, called Caleb to stay with Anna in the bathtub (there was no water in the tub, so she was just playing with the toys!), and ran downstairs with Abby.  Since I had no idea where the tube was and didn't have time to look for it, I just got a new one and tried to put it in.  It wasn't easy. The tube had probably been out for a while, and Abby was definitely hurting when I forced it in.

Once I got it in, I looked for the missing tube.  I couldn't find it anywhere!!!  I decided to just go ahead and bathe the girls, since the tube was in and there was no imminent danger.  I sent Caleb back down to search for the tube some more, but he couldn't find it either.

After their bath, I began to get a little worried that the balloon had popped and that was why her shirt was so wet.  I really wanted to find the tube to check, but it was still nowhere to be found.  It was a needle in a haystack...or a gtube in a playroom!

I decided to call Peds GI, since I still couldn't find the tube and was really worried about the balloon.  The fellow I spoke with was equally concerned, and then he asked if I was sure it didn't fall in instead of out.  In, as in in her stomach.  Wonderful.  Since I couldn't find the tube, I really wasn't sure!  He wanted to see her and have xrays done.  JUST as I was getting ready to hang up, I gave the ball pit a cursory glance, moved some balls around, and spotted the gtube--in tact! 

I was so relieved, although poor Abs must have felt some pain when the inflated balloon popped through her gtube stoma!  I looked at both girls and asked who pulled the tube out, but neither girl is talking!

This just goes to show that you should never get into a public ball pit.  You never know what you'll find in there--used drug needles, knives, gastrostomy tubes...

Tuesday, May 15, 2012

How to Miss a Life

Update 5/16/12:  It was brought to  my attention that I forgot to link the article!  Sorry!  You can read the article at the link below.

I read this article the other day, and it was SUCH a good reminder for me!!

I'm not one to be on my phone very much out in public.  I might send a quick text if it's really important, but I'm not surfing the internet or anything.  I don't play online games and hate phones at the dinner table.  I have to admit that I felt pretty good when I first started reading the article!

Then I got to the part about checking your email and getting mad when your child interrupts you.

Or when she mentions using car time to make phone calls instead of talking to your child.  (I have Blue Tooth through my car, so it makes it very convenient to get phone calls out of the way.)


While I absolutely must have a phone with me in case something happens with Abby, I am really going to work on using other electronics when the kids or awake.  I'm also going to try to have more meaningful conversations with Caleb in the car.

So those are my technology goals.  Did this article inspire you to change anything about your technology use?

Monday, May 14, 2012

blogging break

For Mother's Day, I was given the ultimate gift--the chance to go to bed early (and not have to wait up for the nurses) for a WHOLE WEEK!  Woo hoooooooo!  I also have the next FIVE Saturdays to sleep in....oh, yeah, and I get to go see Jekyll and Hyde when it comes here in November....but sleep is what is currently on my mind!  :)

Since I try not to blog when the kids are awake and I won't be staying up late waiting for the nurse, you might not hear too much from me this week.  Never fear, I will be back...with tales of our Imagination Movers concert, an account of all of Abby's spoken words, and a few other fun things.  Stay tuned!!

Beach Adventures

Caleb had "Beach Day" on Tuesday for school.  We all headed to a local beach for some shark teeth hunting, sand castle building, and freezing cold water splashing!  Although it wasn't all that warm, I dressed Caleb in swim trunks and a swim shirt because I knew he'd get soaked. I was right!

I didn't take too many pictures because I was too busy playing with my boy, but I did snap a few when two horseshoe crabs washed up on the shore.

Yep, there are two...connected...

The kids thought it was the coolest (and grossest) thing in the world.  They didn't even realize there were two.

There were also three copperheads right near the little footbridge.  Someone called animal control, who proceeded to prod the snakes and make them mad.  Smooth.

When we were leaving, the "professionals" were watching the snakes.  I asked what they were going to do with them, and they said they didn't know, but they didn't want to kill them.  I asked why not, and they said that they hadn't hurt anyone.  So...they have to hurt someone before you do something.  Right...

At any rate, we left unscathed and Caleb had a good time at the beach...until he had to walk back down the long path with shoes that suddenly hurt his feet.  He begged me the entire way to carry him--along with our 2 beach chairs, the cooler bag, a backpack, and a bag of sand toys.  Needless to say, it was a long walk back to the car!

Saturday, May 12, 2012

Teacher Appreciation Day

I'll admit it.  I have developed a Pinterest problem.  As much as I try not to get sucked in, the wonderfully crafty ideas are just too much for me to handle!

So I went right to Pinterest to look for some gifts for Teacher Appreciation Day.  We have a lot of teachers these days:  Caleb's 4 teachers, Abby's 3 therapists, and her 3 nurses.  They're all teachers in their own way, and we like to say thank you with little gifts every now and then.

For Caleb's teachers and Abby's therapists, I made Emergency Chocolate pull-tab cans based on this post.  I found this quite some time ago and have been saving the tin cans that Caleb's mandarin oranges come in ever since!  The pull-tab stays in tact because you open the can of oranges from the bottom using a can opener!  Cool, huh?

I typed up a little narrative explaining when the chocolate was to be case of emergency only!  Abby's and Caleb's are slightly different.

"The contents of this can are to be used purely for the treatment of stress caused by Abby.  When her sassiness and stubborn nature become overwhelming, simply hide in the nearest closet, pull the tab, and consume immediately."

"The contents of this can are to be used purely for the treatment of stress caused by Caleb.  When his arguing and stubbornness become overwhelming, simply hide under the closest table, pull the tab, and consume immediately." 

The hardest part was gluing the bottom lid back on, but I got better after I did a few.  Actually, I ended up redoing my first couple of cans because I figured out a better way to do them!  I covered each can with scrapbook paper and tied a tag to the top with some decorative ribbons.  Voila!

For Abby's nurses, I found a great, extremely easy recipe for a sugar scrub.  I thought this would be nice for them since all of the hand washing and hand sanitizer makes their hands dry and rough.  

All I did was buy Dawn with Oil of Olay Hand Renewal (it's pink, has lots of moisturizers, and smells really good!) and a bag of sugar.  Actually, I used the sugar I had and bought a new bag to replace it! 

I put the scrub in a small Lock and Lock container (no, they weren't used!!), but I could easily use a baby food jar next time and cover the lid with fabric.  I didn't have any because Matt told me I needed to recycle the ones I was saving because they were taking up too much space in the garage.  I knew I should have hidden them better!  Sadness.  :(  You could also buy glass Mason jars like the woman did in the tutorial where I originally found the idea.

I poured enough sugar to fill about 3/4 of the container.  Then I filled the rest of it with the Dawn and stirred until it was thoroughly mixed.  I tested it out and it was really nice on my skin.  It reminded me of the expensive hand scrubs you buy from high-end cosmetic companies...but a whole lot cheaper!!  

I decorated the outside of the container with a ribbon, some buttons, and a few flowers.  I attached a small tag at the top explaining what it is and how to use it.  

If you're looking for a teacher gift (or a thrifty Christmas gift!), check these two out!

Friday, May 11, 2012

Felt Board

Ready for another Pinterest-inspired activity?  Think Sunday School felt boards from your childhood.  So fun!  I have had my eye on this one for a while and made it just as soon as I bought some felt at Walmart!

I got one package of felt and let Caleb choose two colors to be used as backgrounds.

I glued the two pieces back to back and let it dry for a few minutes.

Then I simply began cutting pieces of felt into various shapes.  I chose to use plain, organic shapes like rectangles, squares, circles, and triangles.  The original tutorial used craft scissors, which turned out really cute too.  

I cut a small hole in the background, threaded a ribbon through the hole, and tied a few knots so that the ribbon would stay secure.  

Caleb has absolutely loved this!  This is a tree, the moon, and some sticks.  Since 
this picture was taken, he has become much more creative and prides himself in using every single piece of felt.  

The cool thing is that he can roll this up and save his creation for later.  We put all of the extra pieces in a Ziploc bag and rolled it up inside of the mat.

This was an easy craft that only took me about 20 minutes total to do.  The only cost was the package of felt, which cost maybe $3 and I still have a lot left over for future crafting.  It's a great take-along toy for the doctor's office, on vacation, etc.  

Thursday, May 10, 2012

Dance Party

Caleb and Abby love dancing to "All the Single Ladies!"  

The girl learned to climb up on chairs to dance pretty quickly, and the boy is a dancing machine!  

Wednesday, May 9, 2012

Photo Session

We had a family photo session done on Sunday with our old friend Tara.  (She's not old, just our friendship!)  She did a fabulous job, despite the less-than-cooperative little boy.  She was extremely patient, and even rolled with it when Abby and Caleb were both crying at one point!  She assures me that she got some good ones though.  :)

Seriously, we were really impressed with Tara.  I can't wait to see the pictures!  I know I'm going to love them!

In the meantime, go visit Tara at her photography blog.  Ooh and ahh over her awesome photos and leave her some nice comments. :)

Tuesday, May 8, 2012

A Conversation Parents Should Not Have to Have With Their Child

I've hesitated to post this, because it was an intensely personal and sensitive conversation.  But I hope that by sharing this, people will recognize that siblings need love and reassurance too.  Sometimes, the special needs child needs so much attention that the brothers and sisters get pushed to the side.

The other night when I was putting Abby to bed, Caleb brought in his Minnie Mouse to give to Abby.  (No, I have no idea why he has a Minnie Mouse.  I'm pretty sure he got it out of my treasure box at school a few years ago, but for whatever reason, he loves it!)  This was very generous because he has been reluctant to let Abby play with it before...which, of course, meant that she wanted it even more and would often sneak into his room to snatch it!

So I was surprised when he told me that she could have it.  When I asked how long, he told me that Abby could have it until she died.

Not wanting to make a big deal of what he said, I joked that Abby was going to be around for a long, long time, so was he sure that he wanted to give it to her for that long?

But then I noticed the serious, sad look on his face.

I dropped to my knees and asked him if he wanted to talk about something.  Near tears, Caleb shared that he knew that Abby had a lot of medical problems and he was worried that she would die like Becky did.


I brought him downstairs to where Matt was and the three of us had a good cry right on the kitchen floor.  Caleb asked how long we would have her and we told him that so few people have what Abby has that we just don't know.  But we do know that she is doing better than pretty much everybody else who has what she has, so we hope she is going to be around for a very long time.  I told him that the best thing he could do is to love Abby so much it hurts, for as long as we do have her.

Caleb also told me that he he had been worried that Abby would never walk.  I confessed that I was too, but look what she's doing now!  His response was, "Yep!  Good things happen when God makes them happen!"

I love that kid!!!

I'm so thankful that Caleb opened up to us about his feelings, but it was a tough, tough conversation.  Five year olds should not have to be worried about whether their sister is going to die.  I'm tearing up right now just thinking about the conversation.

Please don't stop praying for us, and especially for my sweet boy's heart.

Monday, May 7, 2012

9 Ways You Can Help a Special Needs Parent

Remember this article that I posted a month or so ago?  It talked about some important things to know about a special needs parent.  This article was so well-received that the author has written a sequel, of sorts, explaining how people can help a special needs parent.  I have written some of my own comments to each item in the list.  These comments are in red so as not to confuse anyone!  :)
When I set out to write 7 Things You Don't Know About a Special Needs Parent, I was a little nervous. I thought to myself, Who am I to speak for all special needs parents? My situation felt unique, and maybe no one would relate to what I was going through. I was encouraged by this post, though, and thought I would at the very least write it for myself, and share it with my friends, since these were hard things for me to talk about.
I have been completely overwhelmed with the response to this article -- huge numbers of Facebook shares, and special needs parents from around the world commenting on the article, tweeting and emailing me their stories and their appreciation for voicing their hard-to-voice emotions. I've learned about rare conditions I'd never heard of, cried reading personal stories about affected children, laughed out loud at some feisty responses to some of my points. Gratitude doesn't even begin to describe how I've felt about this whole experience.
More importantly, the response has made me reconsider my third point, that I feel alone. I realize that I really am not alone. Thanks to technology, an incredible worldwide community of special needs parents is only a tweet or comment or blog post away. Many thanked me for writing the article and making them feel less alone; now I thank them for making me feel less alone. (And thanks to HuffPost for giving us this platform.)
I thought I would follow up with another post, one that I've had in my heart to write for a while. The first article expressed some of the emotions related to special needs parenting, with the goal of building understanding. So others know how much we go through -- now what? This article offers practical tips on how typical folks can relate with and help special needs parents.
One of the hardest things for me to learn as a special needs parents was how to ask for the help and support I needed. And frankly, sometimes it felt like a luxury, when my more pressing concerns were getting through the workday and the next therapy or doctor's appointment.
But communicating and relating to each other is really important. Although a typical world can be miles apart from a special needs world, I will never give up on trying to build bridges and understanding, because our combined worlds won't grow otherwise. I don't want to be a self-enclosed bubble (although I was for a long time). I don't want to grow apart from my friends with "typical" kids... especially when many of them sincerely want to know how to be there for me.
{Me and my son Jacob in a doctor's office. He has a disorder of the 18th Chromosome}
So, here's my list of nine ways you can help a special needs parent -- or me, at least. Feel free to chime in and add your own.
1. Talk about your kids' personalities, not their accomplishments. I mentioned in the last post it can be hard to be around typical moms, especially when they're bragging about their kids' accomplishments. When I hear a mom tell me that her 3-year-old knows all the words to her favorite book by heart, it can hurt when my son can't speak. And it doesn't give me a lot of room to say anything in return. I'm not inclined to mention one of my son's accomplishments, like he made the "B" sound the other day, only to be met with compliments that can feel patronizing. But here's the thing: I'd love to tell you all about Jacob's personality. I want to share with you how funny and weird he is, how mischievous he is, like how he sticks his finger in his nose all the more when I say, "Ew!," just to get a reaction from me. How he is affectionate, silly, and determined to get his way. How he kisses fuzzies he finds on the ground, and is obsessed with elephants. I want to know about your kid's personality, too, which is probably more interesting than his or her achievements, anyway. No matter how impaired a child is, he or she has a personality and a spirit, and the parent knows it. Let's start talking about who our kids are rather than what they can do.
Abby is such a little firecracker, I think it's pretty easy to talk about her personality.  I do love when strangers comment on her sweet chubby cheeks or beautiful eyes, or note that she is "into everything!"  I certainly don't mind questions about her trach or machines, but it's nice (for us, for Abby, and for Caleb) when people acknowledge Abby as a person as well.
2. Insist on helping. No matter how "together" I appear on the outside, I can always use help. In fact, sometimes appearing "together" is the only way I can make it through the day myself. You'll notice I didn't write "offer to help." Offering to help is lovely, don't get me wrong. But from experience, I often have a hard time accepting help, even when I really need it. It's odd -- why am I trying to act like a superhero when I actually need help? Sometimes I doubt the offer, thinking they just feel bad for me or are just being polite. But if you insist on helping, it's fabulous because I feel like you will not take no for an answer -- it takes a weight off me. In terms of how to help, you can always ask, "How can I help?" and if a special needs parent gives you some suggestions, that's great. But if you find that this question is getting you no response, it's not because he or she doesn't need help. It's because she doesn't have the energy to figure out what to tell you. So if you love this person, be a detective and find out how you can help (and make sure it's actually helpful to the person). "I'm sending you a few cooked meals this week." "I found a few great neurologists in your area." "I'll drive your kids to practice this weekend." "I got you a housekeeper for a few hours." One way to help that will probably be universally accepted? Help watching the kid so the parent can have a break.
I was so appreciative of the ones who just jumped right in to help when we were in the hospital with Abby or right after we got home!  While the "let me know if you need help" offers were sweet, I often didn't even know what to ask for!  It was so wonderful when someone just jumped right in and made a meal, picked Caleb up from school, vacuumed, etc.  I hated asking.
I don't really feel like I need this sort of help now (unless Abby is in the hospital--then I do need help--especially with Caleb!) because we've figured out our normal and we're rolling with it.  
3. Stop with the maxims. I understand that people just want to offer hope and encouragement and don't know what to say sometimes. But I never knew a cliche or maxim that suddenly made everything better. Examples of things I've heard that are pretty frustrating: "He'll be fine." (How do you know this? And why are you diminishing what I'm going through?) "Everything happens for a reason." (A personal non-favorite of mine.) "He'll get there." (Again, how do you know this? What if there are some things he will never be able to do?) I sense sometimes that the maxims are really to make the speaker feel more comfortable with the situation -- but they don't help me. Please lose the maxims. Just be there for me. Tell me my son is adorable (it never gets old). Listen to me, cry with me, laugh with me. I don't need canned wisdom, I need friends, ears, and helping hands.
I'm back and forth on this one.  Sometimes the "she'll get there" comment makes me groan, especially when it came to the walking.  I didn't want her to get there; I wanted her to be there!  (Side Note:  I LOVE that those last few sentences are in PAST TENSE now!!!)   It really depends on my own mood, I guess.  Most of the time, they really don't bother me.  I've learned that people are just trying to be nice and they don't really know what to say, so a canned response is better than none!  
4. Extend me some grace. While in some ways my parenting experience is the same as a regular mom's, in many ways it's not. I can't begin to explain how hard it can be sometimes. Sometimes I'm exhausted from a rough week of doctors' appointments, or maybe you just caught me in a sad moment wondering if Jacob will ever live independently, or what will happen to him if I go first (sometimes this can be triggered by the smallest, most innocuous thing, like seeing a TV commercial or overhearing a conversation). If I am grumpy, snap, forget your birthday, cancel plans, or otherwise less than saintly, I hope you will just extend me some grace, and give me the benefit of the doubt.
This goes for anyone, whether he or she is a special needs parent or not.  We all need a little grace!
5. Stop complaining about your kids. OK, we all get a license to complain about our kids sometimes (special needs parents included!). But please be sensitive to what you complain about to a special needs parent. One of my dearest friends with a typical and sensitive child would complain to me that her daughter had so many requests: she wanted her eggs cooked just this way, her pillow cold, her car window rolled down just this much. I told her that I would kill for Jacob to be able to tell me those things, so that I could do them for him. He's non-verbal at almost 4 years old and lacks the motor skills for enough sign language or the iPad (for communication apps), so it's painful when I see him so frustrated and unable to express himself. Don't complain to a mom of a non-ambulatory child that your kid ran around and knocked over your favorite vase. Save those complaints for your other friends, or don't make them at all. Because know that your complaint about your child might be our deepest wish for what our child could do.
Yep.  Agreed.  And I'm definitely guilty of being the complainer as well--especially pre-Abby.  And while I'm not always thankful that Abby got into the Lock and Lock container, dumped out all of the Oreos, and crushed half of them again, it does make me smile that she is doing things that are SO cognitively on-target!
6. Ask me how I'm doing. Often the focus is so much on our special needs kids, that the parents are overlooked. And guess what? We are driving the boat. Without us, our kids would be in trouble. The parents need tending to as much as the kids do. My friends often ask me about Jacob (see #7 here for a more helpful way to ask), which I love, but it would also be nice if occasionally they asked me about how I'm doing -- not in my career, or my hobbies or dating life, but how I'm doing in this role as a special needs parent. I don't often get to talk about how hard it can be, or how I'm tired, or how I had a good day or bad day. It might just be me, but a sincere "How are you doing handling everything?" once in a while, and readiness to hear an honest answer is all I need to feel like someone cares. Alternatively, sometimes it's just good to talk about other stuff ... so please go with it if I do.
I do definitely appreciate the people who ask me this.  Just don't be surprised if I cry, even if things are good.  It's what I do! :)
7. Coercively pamper me. I don't know any mom, special needs or not, who will say no to a beautiful bouquet of flowers or a massage. I learned the hard way as a single parent that no one was going to pamper myself but me, so I got good at treating myself (if you're a single parent, read this to learn how to take care of yourself). And my son is much better for it -- he has a happy and energized mom who feels grateful that blue cheese tastes so good, or that her nails look nice (for some reason I always feel like a happier mom when I'm a little more put together!). Call this a shameless plug for more treats in life since the world's cards are stacked against us. A little treat with a note like "You do so much for Em, just wanted to make sure you're taken care of too" will probably do wonders for a parent's day, or week.
Ehh, that's not really me.  I'm not a pamper me kind of a gal.  I'm not very girly and was too weirded out to truly enjoy the one massage I got with a gift certificate I won once.  I'm practical through-and-through, so pampering to me is someone cleaning my house!!!!  :)
8. See my child. Don't stare. But also don't look away or avoid. My deepest wish is for you to see my child the way I see him. Look into his eyes. Observe him with love. See him. Get to know him. Include him, hang out with him, get your kids to do the same. Learn how to treat him with dignity and the profoundest respect, because a wise woman once told me that in some cultures, special needs children are seen as the human form closest to perfection and God, because they are no longer here on earth to learn, but to teach. In these cultures, the elders all bow down when a special needs child enters the room. Oh, but that we might become one of those cultures! One of the most hurtful things for me as a special needs parent has been seeing others, even my friends, uncomfortable or awkward around my son. Please find a way to start really seeing and loving my child. It might start with spending more time with him.
I've talked about this before.  You know how I feel about that one!
9. Support my cause. At the very least, you can support my cause. I might not be close enough to some people in my life for all of the above points to apply, but it's meant so much to me when colleagues donated or ran to support my fundraising efforts for my son's school. You can speak up when other people say things like "retarded," "short bus," or "as long as it's healthy" and explain why it's insensitive. You can stop bullying or teasing if you see it. You can stop being impatient with the checkout clerk who seems to be moving more slowly. You can stop gaping or making rude comments at kids who look or behave differently out in public. You can stop making fun of disabled people (it sounds horrible, but we do it much more frequently than we realize)--or pitying them. You can cast special needs kids in advertising campaigns, TV shows, movies (hint: Jacob loves the camera, he's a total ham!). You can make an active effort to have special needs kids be a part of your typical kids' lives. You can get to know us.
Love this one!  RMH is incredibly important to us, and we love when people show their love for us by supporting RMH.  It means a lot to us when people collect soda tabs, go with us to volunteer, donate money or materials, etc.  I also liked how she mentioned about speaking up against insensitive phrases.  
Moreover, you can stop seeing people's worth in their abilities -- their intelligence, talents, looks, achievements. You can start doing what's actually the harder but better thing: knowing and loving them just where they are.
That's what my son has taught me to do.
That's how I hope you'll come alongside me.
This post is dedicated to all the special needs parents out there -- you amaze me and I'm honored to share this journey with you.