Wednesday, October 31, 2012

Compare & Envy

It takes some time to adjust to the reality of having a child with special needs (honestly, I'm not entirely there yet myself) and in the beginning I felt like I was constantly (unfairly) comparing Rae to other children her age. While my (logical) inner Spock understood the situation and attempted to reason with my (emotional) inner Capt. Kirk (to no avail), I just couldn't stop making those damned comparisons.

After many months of mental chastising, I can finally say, "I have stopped comparing Rae to children her age without the developmental delays that she is experiencing!" It's normal for parents to compare their children to other children (we all do it...just admit it). Who walks first, who talks first, who made honor roll, who is the team captain, who was given the lead in the school play...on and on and on. Sometimes the thoughts are harmless and mean nothing. Other times they can be dangerous depending on the mental stability of the parent thinking them. These comparisons are just a part of life and it was much easier to stop comparing Rae to children that aren't like her (especially if they were older).

Since beating back the impulse to compare Rae to children within developmental standards, I now have to contend with another mental monster I never anticipated. I have to tell myself to stop comparing her abilities to children who have similar developmental delays. I know it sounds like I'm fighting the same monster, but they aren't the same. However, they are distant cousins.

I think the first time I found myself comparing Rae's abilities to another special needs child I was a little shocked and appalled at myself. Who does that kind of crap? (apparently I do) Why would you compare them, they are both struggling. Well, the answer is pretty simple. I want to shout to the world that Rae has crawled, said "mama," or is cruising around our living room like a bat out of hell. I want to post videos of her first unsteady steps or take a picture of her standing on her own with no assistance (yeah, I know it sounds a tad selfish).

The fact is...I can't. In reality, some of the things she used to do, like giving high-fives, she has stopped doing. Those little victories that sustain us have started slipping away and not from lack of us trying to encourage her to continue doing them. It's like a switch has been flipped in her brain and she just won't do them (which generates more questions for the doctors). And while we find more pieces to the puzzle and struggle to put them all together children are passing her by and my fears (wheelchair, immobility, non-verbal) start becoming more of a reality instead of just a nightmare.

These comparisons can lead to feelings of envy (another monster we all battle). This is the ugly side of the coin. The side most would be afraid to admit to, but I'm just going to lay it out on the table because I believe it is normal to feel this way as a parent of any child (special needs or not). There is nothing wrong with how I'm feeling. What matters is how I conduct myself when I irrationally compare my daughter to other children or how I handle that moments of envy that flare up from time to time. Do I let it control my emotions and wallow in self pity at our circumstances? Do I try to force Rae to work on motor skills that are beyond her ability ending in frustration and tears? Do I rob myself of feeling joy for other parents who are finally seeing the long desired results of therapy? Or worse yet, do I rob them of their joy??

I decided a long time ago to take joy in their joy, to try not compare Rae to other children because she is unlike other children, and to take a deep breath when those feelings of envy surface. Gently reminding myself that even though Rae has her own struggles they could be worse, much, much worse. It is a choice I make every day and it isn't always an easy one.

Tuesday, October 30, 2012

Socially Awkward

Rae is a social butterfly. She loves being around people and other children. She interacts well and plays games with people (mainly patting your face or blowing air through her pursed lips). She is socially savvy (for a toddler of course).

I on the other hand...well...I feel like a social caterpillar wrapped up in my cocoon. I can handle small gatherings of maybe 6 or 8 people, but the minute I find myself surrounded by anything larger my anxiety elevates to dangerous levels. Just the act of getting ready to go to a large party makes me act like a crazed animal. I tear through the clothing hanging in my closet deeming each item as unsuitable, uncomfortable, or just too "blah"(this part usually drives my husband batty). I look at my small shoe collection lamenting that I don't have the perfect Cinderella slipper for the occasion. I sit on my bed, tears gathering in my eyes, looking at myself in the mirror and finding all the things I feel are "wrong" with me. I don't feel attractive. I'm not fun or interesting. I'm not blah, blah, blah (just fill in whatever self demeaning thing you can think of).

At the root of all this drama is the fact that I feel socially inept...at least right now. My life for the last year and a half has been absorbed by Rae and all these damn doctors & therapists. I try to get out, but it isn't easy to just "do lunch" when your trying to make sure you have enough money to cover anti-seizure meds or some other test they (doctors) want to try. Add in the complication of working around Rae's therapy schedule plus my poor attempt at a nap time routine and...well... you get the picture. I even find myself shying away from doing free things because gas ain't cheap and I probably need it to go to another doctor appointment. I swear, I talk to Rae's therapist like they are my best friends (I have even cracked jokes about that) because I see them every week and I look forward to their visits more than Rae does. So, my biggest social interaction is Facebook, the occasional phone call (from a friend instead of a collection agency/insurance rep/doctor), going for a walk with a girlfriend, and evenings at home with my husband (usually watching something from the DVR). Exciting life right?

So, is it any surprise that when it is time for me to join the "real world" where people go to work everyday, go out for dinner with friends, take exciting trips, and have steady girlfriends to "do lunch" (or do anything) with that I become angst ridden? I should think not! I don't know how to talk to them anymore. Everything in my world is about Rae and the last thing I need to talk about at a party is her latest diagnoses or test. Who wants to be a Debbie Downer?!? (The following is NOT a real conversation...just one I made up in my head...well except my response...that part is real.)
Random Partygoer: "We just got back from amazing trip to Italy. We dined at this lovely cafe with a view of the ocean and ate the best pasta I've ever had in my life. The beaches were a beautiful shade of blue like a topaz or aquamarine and Joe couldn't keep me out of the water. It was so refreshing! We traveled by gondola through Venice. It was so romantic and wonderful that I didn't want to come home! How have you been?"
Me: "Well the neurologist wants us to increase Rae's anti-seizure medication because she's been having stronger episodes again, but he's hopeful this new combination will work. The geneticist advised us to have genetic counseling before even thinking of having more children, but she's pretty sure a muscle biopsy will give us an answer. The pulmonary specialist said Rae doesn't have asthma, but she may have reflux so we have another test in two weeks. The therapist said that we'll be ordering a wheelchair sometime next summer. And the other day Rae blew bubbles by pursing her lips together and blowing with all her might!"
Um...I don't know about you, but that doesn't sound like good party conversation.

My imagination is always worse than reality. I went to a party this past weekend. I smiled, I laughed, I chatted, I nibbled party foods, I had two jello shots (call a cab!), and I even danced a little! I only felt awkward at the beginning of the party and as more people began to arrive my angst left. I talked about Rae just a teeny tiny bit, but I mostly tried to catch up with friends I haven't seen in over five months.


So, here's my party survival tip: Your friends know your life is a bit crazy and may be a tad one sided at the moment, but their okay with that...they understand (real friends usually do). Don't be afraid to go socialize. Divert the conversation away from you or your child and back to them. You may find out they're in the middle of their own nutty adventure.

It's good to reconnect with the outside world every once in awhile...in person...not just on Facebook.

Thursday, October 25, 2012

Mogan's Wonderland

"You've just won the Superbowl! What are you gonna do now?"
"I'm going to Morgan's Wonderland!!!"
"Huh????"

"So what is Morgan's Wonderland you ask?
Allow me to tell you...or better yet, allow me to let them tell you..."

Here's their Mission Statement & Vision (taken from their website):
Mission Statement
To provide a safe, clean and beautiful environment free of economic barriers that all individuals, regardless of age, special need or disability, can come to and enjoy.
Vision
Our vision at Morgan’s Wonderland is to establish a special place where smiles and laughter make wonderful memories with family members, caregivers and friends. To build a place where the common element of play creates an atmosphere of inclusion for those with and without disabilities, encouraging and allowing everyone to gain a greater understanding of one another.
So what inspired this new, inclusive amusement park? In an article by Christine Bockelman and published in Family Circle magazine (Oct 2012), Gordon Hartman, recalled a family vacation when Morgan was 12,
"The pool was empty--just a few other tweens splashing and laughing. Morgan, who has severe cognitive delays and physical disabilities, inched her way toward the group, clearly wanting to join in. "I could tell these were nice kids, but Morgan was different from them, and they didn't know what to do," Gordon says. Fighting the urge to intervene, he watched as the group left the pool."
Morgan was left alone and feeling disappointed. That was when her father decided that something had to be done which allowed, "...all kids, of all abilities, to learn to play together."


He started working on an idea and with time, a crew of architects & builders, consultations with medical specialists, and investors...Morgan's Wonderland started to become a reality. I think their website convey's their inspiration best:
"Morgan’s boundless love and ability to “soar” above her challenges were the true inspiration for this amazing park. Morgan’s desire to make everyone around her happy is magnified and expanded by the worldwide appeal of this park. That happiness will spread to all those who have special needs, their families, caregivers and those loving friends who volunteer their time to help ensure the success of Morgan’s Wonderland. It is Morgan’s fervent hope that everyone with special needs - young and old, healthy or ailing, introspective or outgoing - will be touched in a very special way by this park. An oasis of friendship . . . a shrine of inclusion . . . an unforgettable wonderland . . . Morgan’s Wonderland!"
I have to admit, I started to tear up when I read this article. It touched my heart and then I started wondering why my city doesn't have something like Morgan's Wonderland. We don't even have a decent park that has adaptive equipment for other abled children! Something should be done and I think it may be my new crusade (after we finish this muscle biopsy business and the holidays). My Rae, in all likelyhood will end up in a wheelchair for an unknown length of time (I'm still hoping to avoid it) and I want her to be able to swing. She LOVES swinging!

Until then, I will sit (not really I have way too much to do) and plan a trip to San Antonio, Texas to visit Morgan in her Wonderland!

*In case anyone is wondering, I checked with them about opening additional parks and they are looking into it, but haven't hammered out all the details. They did tell me that it takes approximately $35,000,000 to build and $2,500,000 annually to run (GULP!).


Tuesday, October 23, 2012

An Epileptic Adventure

In March, we learned that Rae was epileptic (read about it: Act I, Act II, and Act III) and it really shook me up (no pun intended) because she had been having seizures since she was less than five months old. I just thought she was being startled.

Since then, we have changed medications once (from Keppra to Trileptal) and steadily increased her dosage. Unfortunately, back in June, we maxed out the amount of Trileptal that Rae is allowed. We were given a prescription for a medication called Zonegran, which would work in conjunction with the Trileptal in hopes of preventing any additional seizures (not a guarantee, this process is all trial and error). We had reservations about adding the Zonegran and I consulted doctors, nurses, other parents, and my sister-in-law. Our biggest concern centered around the potential for Rae to develop kidney stones. One component that creates kidney stones is lack of adequate fluid intake. Great!

Rae with Auntie Nona.
Rae, on a good day, will take two 8oz bottles. On a great day, she'll take three. On a bad day, well...I resort to Pedialyte and Pediasure and hope I can get her to take at least one full bottle. Of course, on those bad days, I supplement with watery foods like applesauce or purees. I'll give her pure juice if I think she'll drink it. When I'm really desperate, I cave and hold her (and her bottle) while she drinks just to make sure she is swallowing and not playing. Some days, coaxing Rae to drink is about all I manage to accomplish (thank God my husband understands).

When we took this into consideration, we decided to not add the Zonegran, not yet at least. We felt the very small, seemingly infrequent seizures she was having weren't severe enough to risk the side effects. A second MRI was completed in May and it showed no changes in her brain. That told us that the seizures she was having weren't causing any damage (at least at this point...knock on wood). It looked like the seizures plateaued. Of course, that didn't last long.

In the last month or so, we have witnessed an increase in the intensity of Rae's seizures. It isn't completely impossible for her to have one that is stronger than another; so, I observed her when she was sleeping (she only has them she she is asleep) and I started thinking maybe it was time to consider adding the Zonegran, but I was still on the fence. Then I spoke with my cousin (who is also epileptic) and she told me about a seizure she recently had that left her body sore for days afterward. This got me thinking about how Rae's body felt after a seizure. It's not like she can tell me how she feels (she's non-verbal). I started leaning over towards adding the Zonegran even more. Next, I read a post from another mother in my Hypotonia support group whose daughter also has seizures and she noted that after having a small one her daughter would regress developmentally. Then a bigger seizure seemed to "reset" her daughter's brain and she was able to do things like pulling up to stand. I don't think if Rae has a big seizure she'll start crawling, but they are probably impacting her development (something else to consider...I leaned even more). Lastly, for two nights in a row, Rae has fallen asleep in the living room only to suddenly wake with considerably stronger, more intense seizures that are lasting at best for 30 seconds. This is two to three times longer than the seizures she exhibited over the summer. At this point, I officially jumped the fence.

After discussing a change in course with my husband, we have made the decision to add Zonegran. This was not a decision that was made lightly and it hurts my heart. Tonight we start the 4 week process of adding Zonegran to Rae's daily medicine regiment. Say some prayers for us because we don't really know how this new course of action will effect her.

Monday, October 22, 2012

Sun Beams: Doing "More": Take 2

After over a year of trying to get Rae to say "more," I am thrilled to share that it has finally happened! She can now ask for "more" during a meal and last night tears gathered in my eyes as she repeatedly tapped her talker, (an iPad).

Rae's iPad, Fisher-Price case, and Apple case.
I have to admit, I am a little surprised how easily she understands what we are asking of her and is responding appropriately (I also feel like Pavlov with his dogs...tap the talker, get a bite). Rae is tapping the "more" button and then resting her hand to the side of her talker, not just laying her hand over the button. She takes pauses between bites allowing time to chew before tapping "more" again (except when Daddy was feeing her a Zinger, then he had to remove the talker to keep her from repeatedly banging "more"). In addition to tapping the "more" button on her talker, she also looks to the spoon or plate of food after hitting "more." This tells me that she is connecting the action (tapping) with the result (food). I don't think there are any words I can use to adequately express the relief I feel at knowing her cognitive skills are working (I've been worried about that for a few months now). This is BIG (encouraging) news in our home!

I made a quick video of Rae using her talker while Daddy was feeding her dinner:


This was all made possible by our friends and family. For Rae's birthday (read about Rae's "Apple" party here), we asked them to consider a monetary gift in lieu of toys or clothes to help us purchase an iPad and an AAC (Augmentative & Alternative Communication*) app. We are so thankful for the gifts Rae received and, as a result of their generosity, Rae can now ask us for "more." We are looking forward to teaching her more words so she can have a voice of her own...a truly priceless gift.

Thank you all so, So, SO MUCH!

*We are currently using the So Much 2 Say app because it allows us the option of using just one card at a time and we can make cards specific to her everyday surroundings & items. As her ability with the talker continues to progress, we will be able to offer more cards.


Tuesday, October 16, 2012

Spoonful of Sugar

More often than I like, I sit in a chilly exam room at a children's clinic patiently (well, maybe not always so patient) waiting for a doctor to come in and explain the details of the most recent test results. The quiet tapping on the door lets me know that the wait is finally over and we may actually get some kind of answer to this medical quagmire. The doctor smiles, shakes my hand, comments on how much Rae has grown/progressed, and after exchanging a few other pleasantries we get down to the nitty gritty...

What did the test determine?

In our case, every test comes back normal (with the exception of the most recent mitochondrial testing completed at Baylor University but that is another story) and then we discuss the next possible test that may rule another syndrome in or out. The doctor gently goes over the symptoms and gives me a Cliff Note version of its details. In turn I smile, nod, and utter the occasional "Ah", "I see", and "Uh-huh's." Occasionally, these turn into questions like: "What does that mean?" "Is it treatable?" "If that comes back normal, what's next?" It's like being partners in a well choreographed dance routine (The Doctor Dance). He spins me around till I'm dizzy from all the medical jargon. I leap into the air, putting faith in his expertise, praying that he'll catch me before I face plant onto the stage floor. And we're both hopeful...so very, VERY hopeful!

After an appointment (especially if I am flying solo) it is up to me to filter the information down to everyone. This is probably the most difficult part because I don't want to upset them unnecessarily. Do I try to explain what I don't even fully understand? Do I tell them everything? Do I wait until the next round of test results are in? Do I want to try to answer all of their questions? What's the best way of breaking the news (bad not good...good news gets screamed from the rooftop of the tallest building I can find)? Should I sweeten the blow or just give it to them straight? How do I tell everyone? Help!


*POOF*

I magically transform into Mary Poppins complete with a 5lb bag of sugar and silver spoon! I start mixing heaps of sugary goodness into the information I give out (omitting most of the really bad stuff) praying that it makes it easier for them to swallow the castor oil that Rae's testing has become for me. Instead of just drowning them with all the negative, I try to add in whatever silver lining I can scrounge up (sometimes that in itself is a challenge). I also try to give it out in small doses...a little here...(let it sink in)...a little there...(wrap your mind around it)...one more does...there ya go! All done!!
"Rae will probably need a wheelchair next spring, but at least we can paint it pink and have flames added to it."
"Rae may not speak for awhile, but she makes great eye contact!"
"The doctor(s) said they wanted to check for <insert random horrifying syndrome>, but she doesn't have <insert more horrifying random syndrome>!"
I could keep going, but I think you get the picture...

The sad thing is...no one really eases me into bad news (they think they do, but they don't)...at least Rae's doctors don't. I have sat in one doctor appointment after another being told all these potentionally horrible things (more recently,"...her life expectancy could change." That never crossed my mind till that appointment) that may or may not be the cause of Rae's muddled up diagnoses and they just lay it out on the table. On one hand I appreciate it, honestly, I do (well...sorta). It rips the bandaid right off and forces me to move forward from denial and into proactive decision making. On the other hand...


I HATE IT!

I hate it because I have to take my medicine without any sugar to sweeten the better taste that lingers in my mouth. No one lets the blow to my gut recover before punching me in the kidney. While some get to know only what we tell them (unless they google it and then they might get a little freaked out), we get to carry the full knowledge of what these test can potentially mean for our lives. I guess what I'm trying to say is... Momma wants a little sugar!!! Not all the time, but maybe...just maybe...a little sugar would do me some good.

If you find yourself on the receiving end of bad news (especially from me), please keep in mind that the person sharing the information with you probably has a lot more that they aren't sharing. Their burden might be heavier then they are letting you know and bombarding them with "well intentioned" suggestions or a myriad of questions may not be the most helpful thing you can offer them at that time. I give you sugar...please give me time. We can hash out the details later.


Monday, October 15, 2012

Rae's Book Review: I Like Myself

"I like myself. I'm glad I'm me! There's no one else I'd rather be!"


I don't think I could have phrased it any better than Karen Beaumont has done in this book. With a flare for rhyme that is reminiscent of Dr. Seuss, Beaumont reenforces positive self esteem in children by encouraging them to "like" themselves for who they are and not how the world "sees" them. But it isn't just the rhythmic words that make this book so wonderful. The illustrations by David Catrow, give this book a whimsical feel with bright colors and bold images that seem to make the characters leap off the pages.


Rae LOVES this book! I have read it so often that I can recite it on command (not that she tells me to say it, but it is the one thing that almost always seems to calm her down). Every night, my voice gently lulls her to sleep with phrases like,
"Even when I look a mess, I still don't like me any less, 'cause nothing in this world, you know, can change what's deep inside, and so..."
And...
"...I don't care in any what what someone else may think or say."

These words hit home for me in a big way because Rae is special needs. The world isn't always a kind place and she has the deck stacked against her in a big way. Anything (and anyone) that will offer a positive influence on her life is what I want to surround her, envelop her, and reenforce that she is a beautiful, wonderful, smart, funny, and a very loved little girl (honestly, its what I believe all parents want for their children). At some time in her life, she may have to recall all these positive words to use as salve in the wounds the world is sure to inflict upon her. But until then, I get to read her this story over & over to soothe her when she's distressed, to make her laugh, and to remind myself that I like me too!



*If you'd like to buy a copy of this book (there is no digital version):

Monday, October 8, 2012

Rae's "Apple" Party

Rae turned 2 this past week and on Saturday we celebrated with an "Apple" themed party. We decided on an "Apple" theme because we are hoping to purchase an i-pad for Rae to use for communication and therapy (I swear we are not even loading Angry Birds onto it!). When I initially picked this theme, I struggled over adding the wording into the invitations asking party goers to consider a donation towards the purchase of her i-pad in lieu of toys or clothes (we have tons of both, especially since she still plays with baby toys). Ultimately, after consulting my Mom and a few friends, I added the wording and asked for money. We felt it was better to ask for something we actually needed than to receive items we didn't or, heaven forbid, toys that she isn't even developmentally ready for right now (that would have stressed me out).

So, here's is how my "Apple" Party came together (I admit I'm quite proud...<patting self on back>):

Apple invitation made using an apple as a stamp.
All you need is an apple cut in half lengthwise, paint & brush, 
a couple of sharpies, a stencil, and a ruler.

Retro Apple Cheese Ball
You can use any cheese ball recipe for this one. I also used smoked paprika for added flavor. The cheese ball had a little kick to it from the tabasco & cayenne pepper.
Here's where I found the recipe:

Apple Slaw with Poppy Seed Dressing
This was a HUGE hit and everyone wants the recipe.
I cheated a little and used pre-shredded cabbage mix.
Here's where I found the recipe:

Apple Pie Cake
This cake is absolutely delicious! It is super moist, made with applesauce, and has a lovely caramel buttercream icing that was simple to make. I LOVE this cake!
Here's where I found the recipe:

Apple Cupcakes
I used the Apple Pie Cake recipe for the cupcakes, cut a hole in the middle using an apple corer and filled them with the pie filling (chopped up). They are just as moist and yummy as the cake above and my Mom thought they were just as tasty without the icing.
Here's where you can find the directions:
(Hers look WAY better, but I waited too long to photograph them and the mint leaves wilted. Oops!)


My decorations were pretty simple (I do not claim to be an over achieving mom) and this one I came up with on my own. I used foam apple cut out and then taped pictures of Rae from the last year on each side. Then I poked a hole in the top and hung them up using fishing line. I love it so much I'm leaving them up for awhile.

Here's the cake table.


Happy Birthday to you.....


Blowing our her candle (Mimi helped).


No one had to tell her what she was supposed to do with the cake!


She loved playing with her new toy from Doc and Mom H.

video

After a sing-a-long of Itsy Bitsy Spider and Patty Cake 
with G-Boss our little girl was tuckered out!


Happy Birthday Rae!

*Since the Apple party, Rae has just over half the amount we need for her i-pad/case/app. Thank you to everyone for the generous gifts (and not thinking I'm horribly rude for asking for money).

**Big thank you for Aunt R. for making Rae's birthday dress.

***Another big thank you to Auntie Nona for helping me get our home ready for the party. I couldn't have done it all without you (and Mimi and Daddy)!

Friday, October 5, 2012

Getting AFO's: Part 2

Well after four week of waiting we finally have Rae's AFO's (read about the casting process here). Yesterday, we went to Hanger Orthotics to pick up her "magic" shoes (All I hear in my head is Forrest Gump, "Momma says these was my magic shoes."). Ben came in and gave one of the AFO's to Rae. Of course it had to pass her inspection...


First, she had to touch them....


Then, true to nature, she had to taste test them.


Guess they passed muster because she allowed Ben to put them on.


We expected a little complaint since the AFO's were stretching her feet, but it went very smoothly.


It looks like she has a small paddle on her foot.



A few minor adjustments to the length and we'll be ready to go.


Rae was a very patient client while we waited on Ben to trim all the extra material from her AFO's.


The finished product!
If you look close enough you can see the tiny butterfly.

When we first put them on her she was in a good mood and I think she really liked the sound they made when she kicked her feet against her stroller...

video

Tuesday, October 2, 2012

The Back Story: All Systems Go!

When we last left off:

In the beginning of January 2010, I began the process of burying my dreams of motherhood and started thinking of a life of hollow freedom and insignificant travel (I love freedom and travel, but it's not what I wanted). I decided the best way to move past this point in my life was to expel my despair by creating art, specifically photography (I tend to go artsy when I need to work through something...that or I break things I don't care about...which ever works in the moment). I developed a concept and over coffee I discussed my intentions with a close friend. Tears ran down my cheek as I shared my pain and he asked only one thing of me...please wait. Don't do the photo project just yet. Give it a little more time. You don't want to do something you might regret. I did as he asked and I waited...

I did not sit idle while I waited though. I worked on putting our new home together (we just moved into it in November). I finished the last class I needed for my Bachelors degree (I had to take a 3 credit course to make up half a credit...ARGH!). I started thinking looking into Masters programs thinking I would start working towards that goal in the next year or so. I applied for a few jobs that might make use of my newly acquired degree (hahaha...yeah right...I have a degree in history with a minor in literature). Basically, I tried to keep myself busy while I waited...

I waited so long that my best friend couldn't stand it anymore. She was ready to force me to pee on a stick (not sure how that was gonna work).  I refused to do so for fear of yet another disappointment (and those tests can be pricy). Every morning, for nearly two weeks, she would call and ask me if I had peed on a stick yet. Finally, in the beginning weeks of February, I caved into her demands. I stood in my bathroom, nervously staring at my test results. I just didn't know what to think or how to feel. I became so used to seeing "Not Pregnant" on the tiny screen that seeing the single word "Pregnant" left me speechless. Now I had to tell my husband.

I've seen all those adorable ways women tell their husbands that they are expecting and I can't say that I was anywhere near as cute, adorable, or creative. As I mentioned before, we had just purchased our first home and were in the middle of painting (every single room) and I decided I didn't like the yellow in our guest room (I have since concluded I HATE yellow on walls). So, my way of telling my husband that we were pregnant was by using paint chips. I went to Home Depot and picked out "Baby Boy Blue" and "Baby Girl Pink" and taped them to the wall of our guest room. When he came home I told him I couldn't decided between two colors and he needed to go look and give me his opinion...He was a stunned as I was.

Then after a one doctors (I learned I was 7 weeks along) visit and a few weeks I was able to tell everyone.

I never did the photo shoot (I was blessed to do a bump shoot instead) I discussed with my friend. I have intentions of doing it one day, but I have expanded the concept and want to include other women and their stories of infertility (the highs and the lows). I'm glad I waited. I'm thankful for having a wise friend brave enough to ask me to wait...to not put something out there that I couldn't take back. Neither of us knew it at the time, but I was pregnant that day.

And that degree I laughed about has actually come in handy. In our Hypotonic World, I have to research (a skill I honed while writing papers) the medical maze of diagnoses & tests, insurance double speak & appeals, and government laws regarding Early Intervention & Disability.

Since that day in January, my life has been all about waiting. Waiting for Rae to arrive, waiting for appointments, waiting for test results, waiting for Rae to reach another inchstone, and waiting for a diagnoses. So, in hindsight, my waiting to conceive Rae was just preparing me for the periods of waiting yet to come. I'm comforted to know that I am not alone in my waiting. I have my family, my friends, and my faith. I used to feel like I was alone, waiting on God or doctors or tests, fretting over results or stressing over all the "what ifs". Now, I've come to know that God is waiting with me and I am never alone (a big thank you to my waiting family and friends).

"Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go."
Joshua 1:9