Wes’s semi-official birthday: The good, the {really} bad, and the George McFly

…added more for clarification

What do these people and events have in common?  

April 20th 

Today I was given the news that unless Wes arrives early, he will be here one week earlier than expected. This is all for scheduling purposes and nothing else – Dr. K just wants to make sure that everyone who needs to be there is there! If that’s the case, then Wes will be born on or around Friday, April 20th!

Now, In my opinion no doctor wants to necessarily deliver on a weekend, so this is made out of pure math and assumption on my part! Who knows, he could be here the 18th or the 25th! But, it’s nice to have clarity in the birth of little man.  Dr. K will give me better insight after my ultrasound and routine NST next Friday.

Honestly, I am not  thrilled about Wes being born on this date.  Though there are some good things that have occurred, most people associate this date in a negative way. Actually, two weeks ago I casually mentioned to someone, “Just watch, he will be born on 4/20.” Oye!

So buddy, either your birthday will need to be changed or we’ll just have to make the best of it because you will rock this date in a positive way!

XOXO, Mom

Harriet Tubman starts Underground Railroad – an amazing women!

Halley’s comet passed on this date in 295 and in 1910.

Fenway Park officially opens 1912. Daddy lived in Boston before meeting mommy!

Appolo 16 lands on the moon. Your great Uncle Harry was part of the Nasa space missions. He was a special man, just like you!

Adolph Hitler was born on this date in 1889. Wes, he was a bad man.

Deep Horizon Oil Explosion happened on this date. Mommy and Daddy were going to go to the Gulf for our honeymoon, but we canceled plans due to this event.

100th episode of Murphy Brown in 1992. Murphy contemplates her ability to be a good mother.

Joey “Woah!” Lawrence was born on this date in 1976. Wes, he was the heartthrob of my era!

Columbine High School Massacre happened on this date in 1999. This is a prime example why we don’t want to bully others.

Carmen Electra, also known as Tara Leigh Patrick, was born on this date in 1972. Stay away from girls like her, I mean it!

George McFly AKA Crispin Glover was born on this date in 1964. You will love this movie!

Day to celebrate the green stuff observed around the world since 1971. Stay away from the green stuff, Wes. It’s poison!

Week 35: Craziness!

Before getting started on my weekly update, I just have to share the rocky morning I’ve had so far. You’ll get a good chuckle at my expense, and that’s ok!  

 This all occurred this morning between 6:38 and 8:15… for real.

Strike 1, Late start: John and I woke up a little late – like 6:38 am late. That’s over an hour later than we should have gotten up, especially since John has to be at work by 7:30 and I needed to be in Paoli by 8:15.  Being only 15 minutes from work, John had no trouble getting to school on time. However, for me this was nearly impossible.  Rush hour in the suburbs of Philadelphia is a nightmare, regardless of where you live within the Philadelphia, Bucks, Montgomery, Chester and Delaware County area.

Strike 2, Unable to dress for WDSD: I was in such a hurry, I had no time to plan my WDSD blue and yellow outfit and I left in a rush with dirty hair, a hot pink top and black skirt. Totally not how I planned my day.

Strike 3, Pedestrian: Let’s set the scene. I’m at the bottom of the street in Royersford and see a kid begin to walk across the street. Fine, I clearly stop. But the little *bleep* walks slower than me with a full bladder! He’s fiddling with his earbuds, not even noticing a car is waiting for him to cross. So, I do what I do with anyone who is ignorant and inconsiderate – I lay on the horn, scream at him to pay attention and move! Yes, a little bit of my New York heritage came out at that moment.

Strike 4, School busses: I was behind school busses on several occasions which isn’t so bad because the busses typically pull off into a side street eventually. However, in Phoenixville I was seriously cut off! Like, not just cut off where there’s plenty of time to slow down. I mean, cut off where I could have been pushed off the road or crushed. Leave it to bus drivers in this area to cut out in the middle of rush hour traffic and not get hit by other vehicles or pulled over by a cop.  Oh, wait a minute, how about this morning! Or, how about the crash that killed the little girl, who was a triplet, a month ago!

Again, I lay on the horn and have a mini flip-out session. {Are you worried yet that I am a teacher? I swear that I am typically a sane human being, but when you combine hormones, stupidity, dangerous situations and traffic, I lose it.}

Strike 5: A trip that would take 40 minutes and 35 miles away via highly traveled 422 to 202 (without traffic) took 75 minutes by way of moderately traveled back roads. Take into consideration parking and navigating the labyrinth formally known as Paoli Hospital, I got there just in time. Pfew!  Needless to say, I already sent 3 threatening texts to John regarding what I was going to do to the women who rescheduled me at 8:15 in the morning. Thank God my husband is taking this new “irie” approach to life and did his best to make me happy, smiley face emoticons and all!  He’s a sweet guy!

Strike 6:  Still somewhat annoyed from the hellish drive, I slowly work my ways towards the hospital from the parking garage.  Just as I was exiting the parking garage, a car stops to let me cross.  This is where I get pissed. I walk at a snail’s pace, especially since I have to pee. I am 20 feet from the road, which will take me at least 45 seconds to cross fully. I am waving the kind driver to keep moving, but the J.A. is on her cell phone not paying attention. This is where I get made and scream, “Just go! J.C.!” {If you know me, you know that I really don’t swear and I use filler words like “Jiminy Crickets”. However, I was at my wit’s end.} I was angry because although she “kindly” allowed me to cross, I felt like I had to bust a move to get over there because you know that she really didn’t want to stop. I was also pissed because she was on her phone and did not see me wave her past. Argh!

The best part was when the chick coming towards me chuckled and said that, “I made her day” with my little tiraid.  L.O.L. You know, that actually helped me to find some humor in the day.

In any event, I need to shower, put on some yellow and blue and make it an amazing day!

Now, let’s get to the good, happy-go-lucky-but-still-laugh-at-my-expense update!

How far along? 35 weeks!

How big is Wes? According to babycenter.com, Wes is a “honey dew” melon. Again, he’s a bit smaller, so let’s call him a “cantaloupe”, haha! In reality, he’s a bit over 5lbs and the doctor said that he is looking well and on track.

Health of Wes? NST’s are getting shorter and shorter because momma now knows that sparky needs to be riled up otherwise he’s a sleepy baby.  Dr. K says that he is looking great and she talked about early delivery dates with me so that all of his specialists can be there.  She’s thinking a week early, but she will know better next week once I start “internals” to see if I am dialating. Yum-O!

Health of Momma? BP 110/70 and my weight has drastically increased in one week. D’ah!  My fingers are so fat that I cannot wear my wedding rings, but at least there is a lovely dent on my ring finger to show that “I’m taken”. Yes gentleman, you cannot woo this larger-than-life preggo, so don’t even try! {The boys cannot resist my kankles!}

My hormones are out of whack. Some days I am really happy; other days I’m so sad. Part of it has to do with the unknowns associated with Down syndrome and not knowing if he will indeed need surgery for his potential poop issues as soon as he’s born.  I love my son so much that I worry myself sick. I know that I would worry even if this was a typical pregnancy, but honestly my fears are heightened due to the unknown. I know that once he is here my anxiety will diminish and I will be able to chill out, but don’t count on that until he’s here.

Weight gain? Wow, last week I was what, 182lbs.? This week, I’m 189lbs.!  Holy cow, please be water weight! Dr. K assured me that their scale is wrong, but I’m not going to lie, I’ve seen my home scale increase. I guess this is what happens when you stop work and no longer bust a move around school all day. I think I need to go for a walk IMMEDIATELY.

Maternity clothes update? My Buddha belly hangs out of the bottom of all my shirts! I live in yoga pants and anything stretch.

Stretch Marks? No stretch marks at all.

Skin? Horrible, just horrible! Along with my bacne, my vitiligo {think Michael Jackson and his light skin} is starting to show due to the increase in sun exposure.  Plus, I believe I am getting a little bit of melasma {think brown patched} next to my vitiligo and near my ear. I’m a flipping calico cat!

See, he's not even happy!

I love my son and I actually love carrying him and being pregnant. I do not love what pregnancy is doing to my body.

Sleep? Varies… I’ve been running hot at night and wake up sick to my stomach often that it’s hard to sleep at all.

Best moment this week? There are so many great moments! First of all, the weather has been amazing. This week we may actually hit near 90 degrees by Friday! What the what!? It’s March, in Pennsylvania! Another great moment was seeing my colleagues one last time before Wes arrives. This was so nice because I really do miss them. It was somewhat of a bittersweet visit since I know that I cannot work due to physical and mental limitations, but I still feel guilty for my choice. I just need to remind myself that I am doing this so Wes doesn’t come earlier than expected. Repeat Adrienne, “It’s all for Wes, it’s all for Wes, it’s all for Wes…” And of course, today is World Down Syndrome Day, so what’s not to celebrate!?

Movement? Space is very limited for Wes at this point, so the majority of movement is felt when he has hiccups, when I move into a position he doesn’t like, or when I eat something hot or cold.  I can rile him up, but I’d rather not. He makes me pay for it severely, LOL!

Food cravings? Anything that’s edible. I don’t want to talk about food right now – we’re not friends, especially since I am gaining so quickly now!

Labor signs?  I think my body is starting to prepare for Wes. I am getting Braxton Hicks more frequently, but still sporadic enough to not call it in. There’s some pulling going on down south and I feel nauseous more often, which I would associate with some dilation.  Internals start next week, so we’ll have a better idea of where I am at by that point.

Belly button in or out? It’s still in and I doubt that it will pop out by this point, but ya never know!?

What I miss? Being 150lbs. Never thought I’d wish for that. I can’t believe that I was 136lbs. in 2009… so sadly missed! P90X anyone?

What I am looking forward to? I look forward to getting my pre baby pedicure with my neighbor whose also pregnant. I am going for a baby blue color in celebration of Wes. I’m sure by May my toenails will look really bad and I will regret going with that color.  I am also seeing the Hunger Games this weekend. Still debating whether I will dress for the occasion as a Morphling, Rue, or pregnant Katniss. I guess we’ll see!

Weekly wisdom? Don’t make appointments for first thing in the morning.

Milestones? 4, yes 4 weeks until Wes arrives!

Our visit to the Down syndrome center

I apologize in advance for the late posting of our trip to the Down syndrome center. This week has been pleasantly full of activities from having my in-laws up for the weekend, to my wonderful shower hosted by my mom and sister, and nesting like a mad woman. So anyway, here it is…

Recently John and I had our meeting with Maria at the Eastern Pennsylvania Down Syndrome Center in Trexlertown, PA. It was a great experience learning about the facility and other information about Down syndrome including concerns we had regarding therapies, pediatricians, school issues, and more. What we didn’t know beforehand was that there are only three Down syndrome centers in all of Pennsylvania, two of which are within an hour of our home. How lucky are we? It’s amazing!

What was nice is that Maria, along with the three other part-time employees at the center, is a mother to an adult with Down syndrome. Maria was telling us the story about how she found out that her daughter had Down syndrome in the early 80’s. Obviously then there were no prescreening done for young mothers, so Maria found out 7 weeks after her daughter was born. Though there were suspicions, they needed to wait until the blood work was back before the diagnosis could be delivered. At that time, she and her husband were both living in North Carolina and they had to drive three hours to get the news, and she said that during the entire ride back home, she and her husband cried. Maria was unable to grieve the diagnosis before her child’s birth like we are able to do, but at the same time it comes with benefits. Maria was able to see her child and know that she was just like any other baby. Yes, she grieved, but she knew that her daughter was a baby first; a baby that needed love and plenty of affection. All the things babies need. It was very reassuring to hear once again that Wes will be just like any other baby.

After briefly telling us her daughter’s birth story, she shared with us the achievements that he daughter made.  After high school, her daughter wanted to go straight to work, and she did. She made a goal for herself to move out of the house by 25. Well, she almost made it by moving into her apartment with a friend the first day of April which was 22 days after her 26^th birthday.  At 29, her daughter decided to go to school and she was accepted into a program at East Stroudsburg University where she was able to live on campus with other individuals with Down syndrome and various cognitive delays. She has been at the college for a year and a half now and even has a serious boyfriend as school, but Maria still doesn’t know what her daughter intends on doing with her degree. Sounds just like many other concerns held by parents! John was especially happy to hear this because when he thinks of Wes, oftentimes he looks into the future regarding his happiness, personal success, friendships and achievements. I focus a lot on the day-to-day plans and his first three years.

A lot was discussed in that meeting; most things we knew already through the research we did on our own, but there were some interesting things we need to consider and look into with more detail.

• There is no guarantee that Wes will qualify for services. Say what!? Yes, a child with a non-curable disability can be denied services. Apparently, Wes will need to be at least 25% delayed in areas of speech and language, physical (fine and gross motor), cognitive development, social and self-help skills to get services. And, if he does fall in the category to receive services and then shows improvements where he no longer falls under that percentage of delay, services can be taken from us. Basically, if my son is higher functioning, he can get didley squat. That is so frustrating! It will be great if he’s higher functioning, but if he’s not at or near 100% of his capacity, then he is not at his full potential. I don’t expect scholarships coming from Harvard or Yale, but I do expect him to be given all the tools to achieve at his potential.

• Since I live in Montgomery County and my school district is for Berks County, I have no flipping clue who I will be seeking out for services. {I remember when I first received the diagnosis, I contacted MCIU, and they told me that I will need to contact the BCIU (IU = Intermediate Unit: basically, the go-to place for special education services, early intervention, professional development, etc. in counties in Pennsylvania.)} What I do know is that Wes is eligible for Early Intervention services, but to what extent, I don’t know? It’s so confusing because according to this document, Wes qualifies under care from birth to 3 under “Known physical or mental conditions which have high probability for developmental delays (such as Down syndrome)” and is qualified for additional services from 3-Beginners (1^st grade) because he falls under, “Metal Retardation”. But, with my research I found out that we will be going through Easter Seals for care from birth to 3. This is not made clear on the document above which makes everything look so easy, but it isn’t.  Maybe I’m just making a mountain out of a mole hill, but it really is overwhelming especially with dual-county citizenship. D’ah! Oh well, just need to call them again and figure out what’s going on. I’m just too tired lately!

• We will have the opportunity to meet with a doctor from either (or both!) EPADSC or CHOP once or twice a year to reevaluate Wes’s progress, so at least I will have knowledgeable doctors on our side when and if we need to get a second opinion for services.

A lot to digest, but we’ll get there one step at a time. Honestly, the majority of these things we won’t be able to do anything about until he is here, so I might as well enjoy the next 7 weeks of pregnancy because after that, it’s a whirlwind! And I’m not even taking Ds into consideration here – all babies need a lot of attention. I’m still not sure if I’m ready, but really, do I have a choice in the matter?

Can’t I just sleep through these next two months?

Today we have our meeting at the Easter PA Down Syndrome Center in Trexlertown. I’m pretty excited to get more information to better help us with Wes, but my excitement is being entirely overrun by my complete exhaustion, terrible memory and crankiness. It doesn’t take a lot to feel run down lately and my baby isn’t set to arrive until two months from today. TWO!

Recently, I’ve downloaded this neat little app on my phone {Astrid Task} which I’m hoping will help me to feel motivated to get work done around the house and keep my life in order. Well for the most part, tasks are going in and few are being checked off. Let’s review, shall we?

Well, aren't we chipper!?

Task 1, Organize coupon binder: Yes, well this is being done in spurts because once I attempt to start clipping and organizing, I feel my blood pressure rise, feel faint and hungry and then I need to lie down. There have been three attempts at this over the course of 24 hours.

Task 2, Prepare grocery list and meals for the week: I don’t want to cook, hence I don’t want to search online for deals or even go into my freezer to see what I need. It’s a vicious cycle. Plus, one computer doesn’t print coupons {The coupon printer, regardless of how many times either of us has uninstalled and reinstalled it, will not work. PERIOD.}, and the other computer works when it feels up to it. I am on the finikie computer as I type, which is probably the worst idea ever.

Not to self: Save doc every minute.

Task 3, Send work docs to unknown women who is in search of a tutor for a kid at some unknown school in the Reading area: Ok, so I actually did this one this morning, but I don’t know a thing about this kid, nor have I interviewed with this company. However, the woman is sending me over this kid’s IEP (IEP!!!!) via email so that I know what his needs are. Umm, hello? Who sends an IEP to someone they don’t know? Besides, is this kid at Wyomissing, Governor Mifflin, Exeter, or Reading? I have no clue! I am assuming that at $35/ hr. with $0.55 per mile for gas, it’s not a Reading student. In any event, this will give me something to do a couple hours a week before and after baby. I know people say that they tend to hibernate once the baby comes, but God knows, my husband knows, any of my family members and friends know, that would be a very bad idea. I am a crotchety person when I am either over or under stimulated. Yes, I am finicky.

Task 4, Vacuum: Vacuuming is the bane of my existence, along with emptying my faulty dishwasher, cleaning my bathroom and keeping my closet organized. I have never been a fan of any of these chores and I never will be. John is well aware of my affliction, but he still thinks I can change. Fat chance, honey. Keep in mind, when John first met me and saw my apartment, there was a trail of clothes (read: 2ft pile) on the floor leading to my walk-in closet that had basically no clothes in it.  When we moved into our new home, he bought be plastic drawers on wheels {I’m pretty sure it was a birthday present, LOL} so I could better organize myself. Ha! Yeah, good one. So, he’s resigned himself to shoving my clothes that are falling out of my closet back in and shutting the door. Good choice! This who vacuuming thing doesn’t suite me at this point because not only do I become obsessive with making perfect lines in the carpet {odd for a pseudo-slob}, but it throws my hips and back out of whack. See, I have a good excuse!

Task 5, Write “Thank You” notes: This is so easy to do, why do I put it off? I seem to have a lot to say on this blog, but you put a pencil and paper in front of me and I’m lost. What are these primitive objects? I blame this on being a lefty – yes, and that’s all. I have no true excuse. Why do you think my thank yous from the wedding were Shutterfly images thanking our guests while simultaneously wishing everyone a Happy New Year? {Which was nearly 6 months after the wedding.}

Task 6, Get a nice shirt for my shower: I’m huge, the last thing I want to do is buy something that will fit this body. My lower half looks like an inner tube is wrapped around my body, like one of those kids bathing suites where they’re intact. D’ah! By the way, how is it that I’m LOSING weight now? Today, I ate 3 servings of breakfast; bagel with butter, yogurt mixed with cheerios, and two eggs over easy and two pieces of buttered toast, all before 10am. Oh, and let’s not forget the 2 pizzas from Dominoes that we’ve been eating since Friday.  I’m kinda wondering if the pizza had a tapeworm in it because I can’t seem to keep the pizza down for long, if you get my drift. Hmmm… In all seriousness folks, fatty Patty here went from 181 to 175 in two weeks? I’m happy to lose the poundage, but I’m not sure if this is okay or normal.  Wait, wasn’t this rant about a shirt for my shower??

Task 7, Paint nails: I’d rather someone else do it, but I’m too thrifty to go the salon. That’s all I have to say about that, Jenn-ay.

Task 8, Make blueberry tea for the shower: I guess I can do this on Friday, but will I remember?

Task 9, Take nephew to the movies: Last week, I promised my “never forgets a thing” nephew that I would take him to the movies on Sunday. Did I remember? NO! This is why I downloaded this stinkin’ app in the first place! Anyway, I’m hoping to take him tomorrow night, maybe a TT and D dinner and a movie date. I hope I remember!

Anyway, those are my tasks for the day, week, month, never? Hopefully it will get me going, but hoping doesn’t get me anywhere unless I do something about it. I do have plans on going to the grocery store today, but now my phone is dead, so it needs to be charged in the event I go to the store and my water breaks and I can’t call John to save the day. Fat chance that will happen, but it keeps me procrastinating longer and longer.

Man, I am a shell of what I was just months ago. No motivation, I’m cranky {though I try to hide it behind my “sunny disposition”}, I’m exhausted, my feet, back, and uterus are sore, I’m fat, and I just want to do, well, nothing. Grrrr….

Hospital Tour

This weekend John and I went to Paoli Hospital to tour the maternity “ward” {I guess you would call it that} along with other preggos like myself – well with the exception of the couple due late July {really?!}. Honestly, I would have gone on the tour early too, but I figured people would look at me funny… like I did towards that couple. Anyway, the tour was uneventful overall, but I found myself getting emotional at times. While the

Yikes!

nurse/ tour guide was educating us on break away beds and their requirements that father’s bring pajamas and not sleep in their underwear, I just kept thinking about how unprepared I am to be a first-time mom let alone a mom of a child with special needs.  At the end of the tour John and I spoke with the nurse/ tour guide about what to expect during delivery knowing that our son would have special needs, and basically she said that she didn’t know. She referred me to other people to consult, such as hospital social services, etc., but to me, it was just another unanswered question. It was just like when I asked Dr. D who we should see for our pediatrician and he told us that, “Any pediatrician would do.” It’s so hard because all I want is for Wes to be treated like any other child, but I become frustrated when I’m told that there is nothing different, as far as care, that is necessary for him. Am I crazy for feeling this way?

In any event, John and I decided that we really needed to make a pre baby appointment with some experts in the field. So, I contacted the Eastern PA Down Syndrome Center in Trexlertown. The facility is fairly close to us and they are able to give us medical services for Wes along with support in finding adequate therapies, doctors in our area, and connections with local families in the Ds community. I’m really hoping that they will give us the answers we’re looking for. Within a day, Maria from the center contacted us back which was really great, and she pretty much knew what we needed to hear.

“…The main thing to remember is that your son is a baby first and foremost and his needs will be the same as any newborn.  If you are prepared for that you are more than half way there…”

I know that this is exactly what others were telling me, but I needed to hear it from someone who really knew.

So, we’re waiting to hear back from Maria and hopefully we can meet with her as soon as possible.

Gratitude

Since finding out about Wes’s diagnosis, a lot of blessings have come our way.  The generosity of others has been immense; from my mom coming down to be with me the day after our 1:4 diagnosis bearing food and support, to the outpouring of hope and love from others within the Down syndrome community that I was fortunate to meet on Babycenter and Facebook. Family, friends, colleagues and complete strangers have all displayed such kindness, love and sincerity whether it be through giving advice or an ear when I was feeling unsure, gifts and messages of hope.  To all of you, I express my sincerest gratitude.

Gratitude is something that took me a long time to understand, especially the direct connection to how it affects my life. A year ago, I was working at a different school where I can honestly say I was unhappy. But one day a teacher friend of my told me about something she did that entirely changed her outlook on life. She gave thanks for her blessings every day in a journal regardless of her mood at that moment. If a particular student was giving her a hard time that day, she would write about how thankful she was for her job and supportive thoughts for that particular child. If something bothered her at home, she would acknowledge those feelings and then write something she was grateful for, such as her kids, her husband, or something specific like a mini achievement.

At first it was hard for me to find gratitude in life and take this friend’s advice. I was an underemployed, over utilized, unappreciated middle school aid, making $60 a day {before taxes} who had already been looking for a teaching position for two years. This, on top of the failure I felt by not succeeding in a business career {my original degree} brought out the worst in me. In my opinion, life sucked at that point. Numerous fruitless interviews over the years and jobs that just did not pan out weighed on me like winter nights in Fairbanks, Alaska. What I failed to acknowledge was how blessed I really was.  This acknowledgement came in the summer of 2011 after a series of events.

In March of 2011 I quit my job to follow a potential six-weeks teaching position for the end of the school year. I was very unhappy where I was, so this opportunity was an excuse to leave early. As usual, I counted my eggs before they hatched, and that job fell through because of events that were out of anyone’s control. No problem, a little set back was normal for me and by this time I was used to it. Shortly thereafter, I had what I considered an amazing opportunity to teach for the entire year at that same school. I really thought I was a shoe-in, partly because this was the same school where two previous job opportunities fell through and I had a good reputation and relationship with the administration and staff. Unfortunately, I did not get the position. I was shocked and distraught this time around. This was my third “rejection” from the school I loved so much. I couldn’t help but ask myself and anyone who’d deal with my complaining, “Why did this happen to me?” “I’m a good teacher, why can’t I get a job?” and “I do everything right, this is not fair!” I had all these expectations of myself and I just couldn’t deal with the rejection any more.

Earlier that year, John and I decided that we wanted to start a family as soon as the new school year arrived. We assumed that I would have a job by then and that they baby would arrive around the end of the school year. Feeling this rejection made me feel unworthy of having a child because I could not personally support him or her, regardless of John’s work status or income. {I don’t care what people say, it’s his earned money, not mine! I needed to earn my keep.}  These feelings just consumed me and the fear at nearly 28 without a child just made me feel hopeless. Would I be able to have a child, let alone two or three after 30? Would I even have a job then?

Returning back to the day I found out that I did not get that job, I was given a choice; I could take the alternate position offered to me or potentially go down another career path out of sheer frustration. I wasn’t sure immediately, but then someone told me exactly what I needed to hear but did not know it at the time.

“You can still be a mom. Don’t let not having your career stand in your way of what you really want to do.”

Wow.

All this time I was waiting for permission to do what I really wanted to do and what I knew would make me happy. I just wanted someone to tell me that it was alright and that just because I did not live up to my expectations didn’t mean that I had to deny myself my happiness.

This is where my story began; this is where gratitude took over feelings of doubt, negativity and despair. I started small, giving thanks in the best way possible. Words such as, “I am grateful for this job even though is it not what I want.” slowly evolved to, “I had an amazing day, I just made a kid laugh when she was crying.”, or “Yeah! The kids really connected to what I was teaching them today!” My focus shifted to what the world could do for me to what I can do for the world.

Gratitude.

Though I may not journal what I am grateful for, I acknowledge it now, one way or another. We can show gratitude for others, or simple little things that we experience throughout the day. It’s easy to get caught up in the chaos of life that we don’t take time to reflect upon the amazing gifts that this world has to offer.

Right now I am writing at my dining room table with the back door open. Light is flooding through the dirty storm door and I’m thankful for the beauty of the pond in my back yard that is reflecting what is left of today’s sunlight. The birds are fluttering outside on the deck, entertaining my little furballs and making them chirp in delight. And, I have a little boy inside of me who is kicking so hard that I may pee my pants. Those little things are moments in time to be grateful for.

Sure, a little deep… oh well, so I will run with it!  In the words of a yoga instructor: Namaste.

Stages of Grief to Acceptance: Down syndrome edition

Please note, I am not a psychologist, though I have seen one often enough to provide some sound advice! {But again, see a therapist before listening to me!}

At some point, everyone experiences grief; grief from the loss of a loved one, failure of a relationship, loss of a job, trauma, major medical diagnosis and so on.  Grief, though hard to admit or discuss, also comes to those who’ve experienced a change in expectations. Expectations of one’s life path or purpose in life no matter how grand or frivolous can send one into a state of sadness, anger and fear.

For those of us faced with the diagnosis of a child with some form of disability, feelings of grief are hard to shoe off regardless of the support systems around us. Parents are faced with questions such as, “What could I have done to prevent this?”, “What did we do wrong?”, and “How am I going to manage this change?” On top of dealing with these questions of, “Why me, why now?” comes shame. Not shame of the child, but shame of even thinking these questions. It’s a cycle of negativity that can give anyone grey hairs and wrinkles!

So, if there are any parents out there reading my blog who have just found out that their child is diagnosed with Down syndrome, or any other diagnosis, know that you’re not alone. The feelings that you are experiencing are normal and just because you are feeling the way that you do, doesn’t mean that you love your child any less.

Below I have outlined the Stages of Grief, and my personal experiences in each of the stages I have successfully passed. At points I worked through certain stages and then reverted backwards, which I didn’t think was possible. However, putting thought into my own grieving process, I know now that it is.

I know that during Wes’s development there will be times when I will return to certain stages of grief, and that’s okay.  It’s just remembering that Wes will reach those milestones at his own pace, and not necessarily at the same pace as “typical” children.

7 Stages of Grief

Shock and Denial

There is a good reason for shock. Shock is your body’s natural self defense mechanism to avoid being overwhelmed. Denial works the same way and helps to protect you over the short term while you’re processing the news you are hearing.

Part of my shock included feelings of being overjoyed/ blessed along with unrealistic fantasies about the diagnosis. This was then followed by the refusal to read material such as books, blogs, and message boards about Down syndrome.  {Along with the annoyance at receiving these materials as well.} I was also hesitant to contact others who are experienced with Down syndrome because it was simply overwhelming. OT, PT, ST, OHS, Alzheimer’s and Leukemia and a whole other host of therapies and potential problems were just too much to handle.

Pain and Guilt

Shock wears off and feelings of complete suffering and pain set in, followed by thoughts of remorse and plenty of, “What did I/ we do wrong?”

Questions of, “Was I messing around with my prescription too much that I caused this?” “Should we have cut back on drinking and socializing?” just rang throughout my head constantly. This was also accompanied by very long periods of sobbing, especially when thinking about what our child may or may not be able to do, how others will perceive him how will be possibly be able to meet all of his needs.

Anger and Bargaining

Frustration then anger followed by lashing out at others or blaming others. If not dealt with in a productive way, this step can result in permanent damage in one’s relationship. “Why me?” questions begin to form.

In conversations with John, I noticed myself occasionally saying, “Maybe his Down syndrome was caused by something you did.” We were also guilty of pushing each other’s buttons to the point of being in a state of fury or rage.

Depression, Reflection, Loneliness

A long period of sad reflection occurs at this point and no amount of comforting or encouragement from others will help. A period of isolation sets in followed by feelings of despair.

Speaking for myself, I have gone through periods of ups and downs since the diagnosis in December 2011.  At points I would sleep as soon as I got home, wake up for dinner, and then go back to bed. Other days I would read about others experiences to help me connect that I wasn’t alone. Most days I would feel isolated from my friends and colleagues because no matter what, a person has no idea how I feel unless they are in the same situation. And to further isolate myself, I wouldn’t do anything, see any friends, or have fun. Towards what I consider “the last straw” of grief was when I couldn’t sleep because of the severe anxiety and noise going on in my head for two weeks straight. This made me angry, so then I did something about it…

The Upward Turn

At this point, you begin to adjust to your new life and the diagnosis; you feel calmer and at peace with life and feelings of depression begin to lift.

… I began to write. This was a goal that I wanted to do for a long time, but I felt so absolutely inept to do so. I think that this was because I had nothing to write about and now I do {thanks Wessie poo!}. This simple act writing has helped me to cope with my personal feelings of grief and bring excitement back to my pregnancy. John and I both began to dress up Wes’s room again as well as prepare other things in our house such as our new half-bathroom.  We actually leave the house other than going to work, which is huge!

Reconstruction and Working Through

At this point, you become more of a functioning human being again and looking for realistic solutions to day-to-day hiccups.  You also search for ways to reconstruct yourself and how you will approach life from now on.

I would say that at this point {2/4/2012} John and I are just entering this stage.

Acceptance and Hope

You learn to deal with the reality of being a parent of a child with a diagnosis, but it won’t automatically mean that you will be overjoyed with happiness.

This is a tricky step for us because even before we had the 100% chance that Wes would have Down syndrome, we accepted him for who he is and had hope for who he would become. This step of the grief process is a little tricky when true loss is not involved because we didn’t lose Wes, it was just our understanding of who his is and will be that has changed. Maybe this is a stage that we will enter into at each milestone Wes work towards? I tend to believe so. Acceptance and hope will come one mini milestone at a time.

Conculsion

I am pretty familiar with the stages of grief and how allowing myself to go too far into these stages would only negatively affect my son and my relationship with my husband and others. Though I know I cannot avoid grief throughout my life, I like to think that I can find ways to somewhat outsmart the deep pitfalls that can be easily slipped into.  It’s too easy to get stuck in each of these stages, and personally I’d rather be realistic and happy because that’s who I am, or better yet, who I choose to be.  I can’t stand people who complain and fish for attention, especially on Facebook, so I don’t want to do the same. {I’m clearly venting right here.} This does not come automatically and it took me a long time to figure out what works for me to pass through these stages while not bringing on negativity towards others. Some people feel better speaking to counselors or another trusted individual. I prefer reading and writing. Writing helps me to find the positive in what can be a downright crappy situation

This may or may not work for you, but I find that if I ask myself, “Is this the worst thing that has happened or could happen to me?” and I say, “No.” then I’m set. And you know what? There are crappier things in life that I’ve experienced, and if I can live through those experiences, what’s a little thing like Down syndrome?

Feisty, Spicy Wes

Recently I have begun to feel even more pregnant than ever; my appetite has increased significantly, mobility has decreased and a little visitor named Braxton Hicks has decided to make his way onto my radar.  On Tuesday, Wes was extremely active from morning until I went to bed that night.  All of this activity caused my “uterus to spasm” consistently throughout the day to the point I had to take the elevator at work, which is the last thing I wanted to do. However, if I didn’t I would have been stopping every 3 steps to catch my breath. So, when Wes didn’t move at all today, I was a bit concerned, but not to the point of rushing out to see the doctor {well, until the end of the day.}

On a typical day Wes is very active, and he shows his best karate kid moves around 6:30am – 7:15 am {drive to work – he hates seatbelts} and 4pm – 9pm {I’m relaxing at this time}. While at work, I typically get a foot to the ribs or belly button at least 2-4 times per hour. So, it was rather odd for him not to act in his typical behavior today. At the end of the work day I decided to call my Ob and they suggested that I come in for a non-stress test after work, which I did. Wouldn’t you know as soon I get there, guess who gives me a little jolt to my ribs. Mmmm hmmm. Don’t get me wrong, I was THRILLED he was moving, but man this kid has a way of making me look like a crazy momma!

In any event, they still decided to hook me up to the fetal heart monitor and movement monitor to see how he was doing, and the little guy

Wes, our little Mr. Strong

showed the nurses what he does best – be uncooperative. You see, John and I are extremely lucky because we get no less than 2 appointments per month at either our Ob or Paranatologist’s office which gives us so much peace regarding his growth and really helps us to connect to this little womb alien that’s always beating up on me {well, except for the majority of today!}. Though we feel very fortunate to see Wes, he’s not so keen on this fact. {Minor side note, we considered naming him “Keen” which would had been rather fitting since Keen means, “Having or showing eagerness or enthusiasm” Dictionary.com}  He did what he did best and scurried away from the monitors, and when he could no longer scurry, he began to kick the monitors like crazy! If only I had a copy of the read out of his heart and movement rate; the lines were incomplete and all over the place! The nurses were laughing because they had to constantly adjust the monitors and had to come in when they would hear the high pitched squeals from the machine when he would aggressively kick at them. It was hysterical! However, I still felt like a total tool being there because of how active he was {show off} once I got there. Regardless, it was great peace of mind and the best part of my visit was when the doctor looked at his read out and said, “This looks good for a baby at 27 weeks; really good actually.”

So, after today’s events I started thinking about what I think I know about my son’s health and personality:

1.       He is strong like bull. My biggest fear when I found out that Wes has Down syndrome was that there would be complications during pregnancy or he will need OHS after birth. What I do know is that his heart is amazingly strong as proven by his echocardiogram, monthly sonograms, and fetal heart monitor results from today. Besides, if he’s born on or around his due date, he will be a Taurus. Taurus’s are known for their stubbornness and determination along with other finer features.

2.       He does everything on his own terms.  Wes is just like his father; he does not like being told what to do, which is evident when I try to get him riled up to make sure he’s still cooking.  It takes an extreme annoyance by someone or something other than John or I to get him to respond on our terms.

3.       He does not like to be messed with.  Wes hates to be strapped to machines; heck the kid hates that I have the laptop anywhere near my belly. Even before I could feel his movements at 18 weeks, the doctors and techs would laugh because my appointments took longer because he would scurry from the machine, flip over and kick any monitor on my belly. I have a feeling that I will have my hands full from day one.

4.       He’s a fighter. Wes knows how much John and I worry about him and how his health might attribute to potential problems in the future. However, he always ceases to amaze us by his strength and determination to be a strong little boy and defy the odds. We know that Wes is telling us in his own way that he is fine, but as parents we can’t help but worry for our little boy.

Though some of these attributes seem undesirable to others, to me they provide confirmation that Wes is fine and I need to stop worrying about him so much.  He has shown so much strength and activity so far, I can only imagine what he will do after he is born. I just can’t wait to see my feisty little man in April!

Pregnancy is getting to me

So this week I officially kick off my third trimester and enter into my 27^th week of pregnancy! What better way to kick off my third trimester than a complete shift in my sleep patterns, hormones, and feelings of adequacy.

Long gone are the days when I would sleep for hours once I got home from work, and fall asleep as soon as my head hit the pillow at night because now I am riddled with a restless brain that will not quit. {This does not even take into account the midnight and 4 a.m. potty breaks, excessive coughing due to the dry air, and kicks at all hours when at one point they were predictably from 7-9 a.m. and 4-9 p.m.} And let’s not leave out the severe break outs I have been getting all over my back and face which further increases my anxiety and significantly affects my confidence level.

Around 23 weeks. I'm 27 weeks now. New Pictures to come!

I’m not sure what happened, but I know it all began once I returned back to work from a week’s long winter break during the holidays. Before the break I was so motivated. Everyone at work would yell at me to slow down and just put my feet up. The last thing I want to do as a pregnant woman is to look like I am a slow and an unproductive employee. When you work at a middle school, it’s necessary to always be on your game otherwise those kids will instinctively know that you are weak, and that’s the last thing I want. I love the connections I’ve made with these students, however lately I feel as though these relationships have become strained due to my exhaustion of carrying around an extra 25lbs. Me before winter break was very nice and happy; I would look students in the eye and smile saying “hello!” or “how are you doing today?”. Now it’s a little different. I find myself retreating back into my mind and walking through the halls of the school as if I just want to get from point a to point b. I feel like I’m neglecting my kids, and in return some of them are avoiding my eyes when I gather the strength to work through my exhaustion and try to mend those bonds.

I am also faced with the stress that I am still not in a contract position. At my school I am a building sub. I really love this job because I have the opportunity to teach kids from 5^th – 8^th grade {I love those “wonder years”!} as well as children in special education and life skills classes. However, it is not something that I can do forever, nor can I do it next year when Wes is here. Financially, it’s just not possible. I live over 20 miles away and after the cost of a decent day care and gas to get to work, I will basically break even and lose time with my son during the most important years of his development. Though there may be two special education jobs available next year, there is no guarantee that I will be in either of these positions. I have learned after three years searching for a teaching job that not to count on anything until it is in writing.

The exhaustion that I am experiencing is starting to make me feel concerned that my superiors are seeing how less productive I have been as compared to the beginning of the school year. I am sure that this is just in my head, but I see the way that colleagues look at me lately. They know that I am not the same and I can’t help but wonder if their concern is due solely to my pregnancy or because of Wes and his diagnosis, or a little bit of both. Being pregnant with a child can bring a lot of anxiety in general {especially when your belly turns into your “eyes”}, but being {knowingly} pregnant with a child with differing abilities can be stressful. I am not stressed at Wes’s differences; I find him an absolute joy and I haven’t even met the kid. I am stressed by what others are thinking when they see me have a bad day. Do they realize that I am just plum tired, or are they thinking that I am overwhelmed with the knowledge that my child has Down syndrome?

Regardless if this is the reality or just my perception, I am unable to change how others see me at this time.  I am exhausted. I am experiencing feelings of inadequacy and low confidence. I feel like a hormonal teenager that thinks everyone is looking at me.   If it is reality that people feel bad for me, then I just need to prove them wrong once Wes is here.  Right now though, I just need to remember that I am pregnant and I have the right to feel yucky and run down. I also must keep things in perspective; if I think the lack of sleep and anxiety is bad now, it will be much stronger once he’s here! Oh the joys of impending parent-hood!