Sunday, November 9, 2014

Everything Changes.....

Isn't that a song? Everything Changes... I can hear the verse in my head but no tune. HA! There are many voices in my head at any given moment though so it could easily be made up. 

What's changed for me? HA again. Only my WHOLE WORLD! When I talked about how my perceptoin of Down syndrome had changed in my last post, it got me to thinkin. Not only has my perception of what Ds is, entails and will be to my life, well, my perception of many things has changed. I guess its what "they" will call growing up. Which I am still not sure I signed up for. Just kidding... a little bit. 

Yea, I will admit that I was pretty upset and freaked out about Ds. I didn't know what to expect. Fear of the unknown, yada, yada. Fo sho! In the end, I now have a daughter that lights up my world and gives the best hugs anyone can ask for. But I also didn't expect to be sitting her typing this while my 2 beautiful daughters are cuddling warming in their rooms - not beds, long story - and my 3rd daughter is kindly kicking my kidneys. Oh, and also while I am no longer a "career mom" or feel mentally sound most days. 

You see, I guess I kinda did ask for "all of this." On numerous occaisions. I remember my long commutes into the city were filled with daydreaming about being a SAHM, blogger and Ds Advocate. That was my greener pastures! I pleaded to my friends/co-workers at lunch about how much it would mean to me if I could JUST be a SAHM, teach some pilates and blog about life. I wanted it oh-so-bad. 

And everything changes. Now here I sit. With all of those opportunities under my belt and at my feet. 

Ya know what? This pasture ain't so greener! 

Let my give you a few reasons why.....

First and foremost - not having an income that is earned by myself is probably one of the most challenging things I have ever experienced. I don't like it and it's VERY hard to get used to. So if anyone wants to give me a job that I would LOVE to do, while being at home with my kids, that would be stellar. Bring it. 

Second, I am 8.5 months preggo - that ain't good for nobody in arms reach of me right now. My hormones are RAGING and my anxiety is at an all time high. I cry one minute and want to throw punches the next. My poor kids and husband don't know which one they will get at any given time. My feelings aren't just hurt easily, they are splattered on my face. I am really getting on my own nerves!

Third - I am pretty certain that Pinterest is the devil. A close second is Facebook because the amount of time and energy they get from me should be illegal. But they are my zone-out moments and I am very grateful for them to exist. 

Fourth, you can't sit someone like me in a house and expect them to be still. Its really a torture mechanism. I mean it's like the dirt and fingerprints are attacking me and I don't have the energy to clean as I wish I could, nor could I keep up with the constant mess making my adorable toddlers care to besiege upon me daily. It's like I am in quiksand and they are pushing my head down as they laugh, cry or do both at the same time. I am the kind of person that rearranges often. Often enough for my husband to want to tie me to a chair. And not in the kinky kinda way. So being here ALL THE TIME and not being able to do what I want to do.like move furniture, tear down walls, paint the stairs..only partially kidding about that list..welll it makes me ARGH! When I worked, it was my reason for not being able to do it. Now that reason is gone. 

Fifth - Elimination of said income really dampers the activities budget and doesn't allow much time for this momma to be pampered or relieved as one would wish. Hence, I am here ALL THE TIME. Sorry, did I already mention that? Read between the lines, I have no money to pay a sitter and no money to do anything if we could pay her. This ain't no TV SAHM gig. I think I was given rose colored glasses! 

Sixth - this is FULL time. I never thought I would have such little time after doing nothing. And by nothing, I mean everything. Just to keep this ship a-sailin, I have to focus on a routine. If I don't, all hell breaks loose and this momma gets emotional. Refer to the second complaint of this post if this doesn't sink in at first. Seriously, most days I feel like I have done nothing by 5 pm yet I am exhausted from re-doing everything that I did before nap time. There has to be a better way and these cleaning lists on Pinterest just aren't cuttin it! 

Seven - Pilates. I can barely even spell it anymore. I haven't even  been to a class since I was about 6 months preggo - WITH LB! That was OVER 3 years ago. I vow to make this a priortiy once I am healed from baby 3 - but until then.. guess it's best to not stress about this one. I have only a few more months of excuses to validate my laziness. 

Eighth - then there's that whole Advocating thing. I do this. A lot. I really do. I mean I ran the entire walk for our local DSA this year so that has to get me SOME points somewhere. I am also a DS Ambassador - yet haven't done too much with that  one. I still could do a better job here. 

Ninth- Being a SAHM. With social media being so rampid and popular now, is being a SAHM ever going to be enough?  I mean, technically, that's my title. The abbreviated version. Really, I am ON ALL THE TIME. I never leave my job. I don't get bathroom breaks. I can't even 'go' anymore without an audience. To the point now that my 2yo tells me Good Job Momma when I am finished doing my business. I eat leftover PB&J's. My mental stimulation is when Elmo asks me what the word of the day is. It's just a lot for any one person to handle. Luckily I have a husband that is more than amazing and helps me so much more than I could ask for. But when you are the chef, the driver, the maid, the teacher, the comforter, the nurse, the ALL OF THE ABOVE and always on call, it can be more than overwhelming. 

Tenth reason everything changes, the Mommy Guilt. When I worked in the city, I felt like I was too far from my lil one. The commute alone sucked the life from me. Being at my job was fine most days. But adding in the 20+ hours I spent traveling to and from, was just too much. But there wasn't a happy medium. I could do one or the other. Of course I chose the other - being with my little ones. Because while at work, I felt like I was allowing someone else to do what I WANTED to do. Someone else got to raise my babies. Someone else got to snuggle her to sleep every day. My guilt went from I can't to I should. Someone else did all that I now do. NOW, I still feel guilty. I am here so I SHOULD be feeding them healthy and nutritious meals. I SHOULD be limiting TV and doing countless activities. My house SHOULD be spotless. Mommy guilt doesn't EVER end, it just changes. Now it's a different kind of guilt. When will it ever go away? 

My biggest guilt is that I feel guilty at all. When, technically, I asked for all of this. Now I think to myself, maybe, just maybe, that commute wasn't so bad. Those meetings weren't either. Maybe my kids did better without me around all the time. Maybe, I am doing more harm than good by being here ALL THE TIME. Will I find ME again? Will my kids respect me as a mother again? Will they ever stop seeing me sad and depressed? 

Its a journey. I get that. But MAN, it's a rough one. I am on year 2 of this transition now and I am still battling my emotions and how to make it all work. Until then... I shall share my heart out with other Momma's dealing with the same struggles and write about these in my blog until it's taken down for being a sad clown! HA!

Until next time..
Shona

Saturday, November 8, 2014

Epic Fail

To say that I failed at 31 for 21 would be a lie. My failure was EPIC! Like, non existent.

So here's the deal. I am OVER Down syndrome. Well for now, in the sense of other people. I think I have PTSD from the Buddy Walk. I am not even kidding. My husband wore his shirt to bed the other night and I literally couldn't look at him. I haven't put the girls' shirts on them since the actual walk. Well, maybe once, to paint in, but that was because they had on cute clothes that day.

The entire event and weeks leading up to it were so very stressful for me. Not to mention the unnecessary drama that came along with it. But what really got to me the most were the behavior of many of the people. I have never in my life experienced such ugliness and just plain rudeness and   that's saying a lot coming from someone that worked in retail and bars most of my life.

I get it. You paid a fee, expected something in return. But it's a FUNDRAISER and the amount of people that forget that you are volunteering your time for an event that your family will not even enjoy, nor will your daughter even want to be at, it stings. And that sting lasts a while.

I am slowly coming out of my funk but I have a whole new take on volunteering my time and the people of the Ds community.

So - what does that have to do with the 31 for 21? Well, for me, quite a bit. You see, in my head, I was all about blogging. Getting back into the swing of things and really making a difference. I really had it in my head that the walk would "Make a difference."

And don't get me wrong, I am sure they both do in a lot of ways. But when you have a trauma as the walk was for me, I think you see things in a different light. I also found myself bored with the same comments and stats in regards to Ds, so finding content to write about seemed daunting. Given that I had just spent about 8 months reading all-things Down Syndrome, I wasn't up for researching anything new = brain overload. I didn't want to blog about things that my readers could google themselves. So I just didn't blog at all. I found myself sharing various stories and things that were on Facebook - mostly - but I didn't offer much else in terms of anything.

It wasn't until the last week of the month that it dawned on me why I was feeling so blue about it all. I am in a different place with Down syndrome. And that's OK. I mean, when LB was born, it was a whole new world for myself and our family. I needed to know those stats and I wanted all that knew me to know them as well. These were the things that were important at the time. The little numbers that made so much of a difference in our new world because they caused me and us to stop and think. They gave us hope.

NOW, 3+ years into this roller coaster, I am certainly no expert, but just in a different place. NOW, I want people to accept LB and anyone with a difference for whom they are. Love them for the people they become and not their diagnosis. Love them for them. I want acceptance. No need to make others aware anymore. Because if you know me, you are HUGELY aware of LB and Ds.

I am in a different place all together as I also have a different version of acceptance now more than ever. I guess I never realized that it's a lifetime of acceptance when it comes to your children. Especially when there are challenges. Example, I find myself needing the constant reminder that LB needs encouragement, patience and motivation to do many of the things her sister does and that's OK. She needs constant praise and we have a long road of additional work ahead of us, where things come so naturally for her sister. It's a lifetime of teaching not only her, but those around us too; about her and about ways that she learns and what will work for her.  Just as I have to remind myself that Ash is NOT even 2 and I can't expect her to know all the things I am trying to discuss with her. Yea, it's odd that I have daily convos with my toddler - like we are lunch pals. HA!

I had a friend that spoke to a new mom whom was devastated about the news of her unborn child and a positive diagnosis of Ds. She wasn't able to grasp Down syndrome and all that comes with it. I chuckled on the phone to my friend because many of the things that used to scare me to  death, have actually become our reality. I worried so much about LB needing braces for her ankles; now I get excited to pick them out. I worried so much about her having sleep apnea, cross that one off too. I worried she wouldn't be potty trained by 2; that she wouldn't walk until 6; that she wouldn't talk; that her speech would be poor when she did start saying words, I worried and I worried. Ya know what... every one of these worries are now our lives and they make LB who she is. We just go with it. LB has overcome so many challenges, I can't put into words how proud of her I am. And she will have many more. We just gotta go with it.

It isn't her I want to change though. It's the world. I want them to understand her and most importantly, to give her a chance. I want it to be without question that a person with Ds can do and feel and say just like everyone else. That she can have a future either financially, acedemically or socially. I want her to have the world as her oyster and without question from others or the need for her to validate her existance.

I want her to be able to go up to a group of girls and be able to feel comfortable while playing. I want her to be able to get a job and live on her own with the money she makes. I want her to be able to have that money - to spend as she wishes and not have to watch the government funds all the time in fear of losing her health benefits. (trust me... I could go on and on regarding this topic).

So, while my daily, monthly or even weekly posts were a total FLOP, my desire to keep on advocating isn't. I will continue to be her voice. Until my last breath.

Until next time...
Shona


Thursday, October 9, 2014

Hypotonia

When we found out LB had Down syndrome, I admittedly had little to no knowledge of this word. I knew that low muscle tone could be an issue but didn't know the word for it. Even as immersed as I tried to become in all things Ds.

So when she was born, I thought the "low tone" they were talking about was how she cried. LOL! I crack up at that thought now. But she didn't cry! She had a yell, almost. It was adorable and yet distinct.

Now that word has become such a large part of our lives that I can't ignore it or laugh it off anymore. Nor did I have any idea the impact it would have on LB's development and life.

When you really think about it, there are so many muscles that you use and you never even think about it.

Since LB has been born, she has the cute little tongue protrusion. Many people commented on it saying she likes her tongue to hang out. But what they don't realize is that it wasn't a willful gesture. It's the lovely Hypotonia.

We see it in all aspects of her life. Mostly, feeding and speech. LB is 3 and has a some handfuls of words that she is able to articulate. Many aren't easy for others to understand yet. I guess this isn't as apparent until you have a younger sibling that is like a little parrot that repeats every word you say.

She's getting much better though and mostly post surgery. I am quite sure her tonsils and adenoids had a great deal to do with her delayed speech in addition to her hearing and need for tubes.

But the hypotonia also has given her a weaker tongue and muscles in her cheeks. If I had one word of advice for any new mom, it would be to learn the exercises and do them religiously! It will make such a difference. I can without doubt say that we NEVER had this taught to us when she was a baby. We didn't even get speech approval until she was much older. This has to start from the early days. Like day 1 or 2! It's CRUCIAL to so many other elements to development.

As a new mom, I didn't know. I wasn't informed. When they ask me how she was eating, I would answer, fine. But now, she is 3 and still can't drink from a straw. She took a bottle and even nursed well. But the concept of a straw or hard sippy cup doesn't work. Let's not even touch on the chewing aspect. That's another nightmare. She is a masher.

Then you have the gross an fine motor that hypotonia affects. This list could get long with all the things it causes, etc. But the one thing Hypotonia does give us, is one HECK of a snuggler!!

Hugs from Bug are just like butta! She melts to you and its the best thing in the world.

Until next time..
Shona

Thursday, October 2, 2014

More alike than different, REALLY though?

What a way to leave my lovely readers hangin, eh?

Let me cut to the chase. LB loves school! Today was actually the first day she said she didn't want to go but then decided to run for the bus. Yes, she takes the bus! I have heard a few comments about her being so small and taking the bus but I think that is the part she likes the most.

I have many things to share about school thus far and will be doing so in the month of October as I also share all things Down syndrome this month. It's time for 31 for 21 people and I am stoked!

However... I may be brief until next week. Just keepin it real here people. You see, I made the mistake, took on the challenge to run this year's Buddy Walk for our local association. At the time that I committed to this great feat, I didn't know Baby B 3 would be arriving shortly after the event. Or that I would be taking on a job, then leaving said job - all in the middle of planning for the event.

Often I have wanted to throw my hands in the air and say it wasn't worth it, but we are 3 days away from the walk and I am starting to feel it all come together. While also still PRAYING it will be a fun day with few hiccups. A few things that make this data junky happy, is the fact that we have doubled what was raised last year and kept the budget MUCH less than what was spent last year too- so I feel good about those stats. We also have 50% more people registered. Those are some pretty good numbers. Now if Mother Nature would cooperate, we will be in a great position to have some very happy kiddos.

So.. back to this Down syndrome thing....

This will be our 4th Buddy Walk. Very exciting considering LB is only 3. (In case you haven't heard of the Buddy Walk, it's a walk that celebrates Down syndrome. HA, easy peasy, hugh? Seriously, there are hundreds all over the world so it's really cool to be a part of something dedicated to such a tiny population in this world.)

K - enough rants... .My point is... each year we do the walk, Jay's school is kind enough to carve out a few hours of their day to host a "Mini Buddy Walk" in honor of LB. It's quite adorable and you may have read about it here a couple years ago. Well they did it again this year and we were beyond grateful for their support.

While walking, one little girl asked me why we were doing this and why we needed money. I can talk to adults easily, give them stats, and ramble a lot of facts about Down syndrome that so many are unaware of. But this little gal caught me off guard to say the least. First, why WERE they giving us money? How do you tell a kid that adults need money to teach people or to have social events? Or to pay for a building... build a website??

The pressure was on and I had only a handful of seconds to make this good.

My response: Well, we are walking in honor of our daughter who has Down syndrome.
Lil Girl: What is Down syndrome?
Me: (thinking that she will have no clue what a chromosome is - she is a 2nd grader- I wasn't sure how to answer her. After the fact, I certainly didn't like my answer either.) I tell her that it is something that might make her different in some ways. Like, the ways she learns, it could even make her walk slower. Then I was lost for words. I had nothing else to offer her.
Her: Oh.

And then she was off to do her own thing and be rid of me.

I dwelled on my answer and hated that I didn't give her facts even if she was younger. I tried to simplify my daughter in a way that made her different when all the while I am constantly trying to force the reasons why she should fit in. But in my head, I NEEDED to explain to this kid - to validate even - why we were all raising money and walking for her. And her having Ds didn't seem like enough of a reason.

After that lil convo, the lil girl kept trying to help LB walk. Because, in her mind, LB was walking slow and needed help. Fair enough. In my mind, walking slower meant that it would take her longer to learn how.

In another instance, I was walking behind LB with Ash and overheard 2 more girls chatting. Then I hear one of them ask - "Which one has Down syndrome?" I was AGAIN caught off guard by these kids. I mean to me, now its obvious. And often, to most adults as well. Yet, these kids didn't see the differences.

I learned a few things that day. One, not everyone sees differences instantly. We are conditioned and learn how to see these things as we grow and gain more life experiences. It's all about knowledge and information that we have in how we respond to these differences.

Two, I think we, as advocates for the Down syndrome community, have an identity issue on our hands. While we want so often to push inclusion and ask that the world see our kids or loved ones as more alike than different, we also want their differences to be what makes them unique and the reasons for the support they are given. Maybe this isn't an 'issue' persay, but it certainly creates some confusion for the lil ones that are just learning about all of these differences and how to treat people.

Three, I REALLY gotta work on my pitch. No need to simplify it, or to justify anything.  Give it to em straight!

Until next time,
Shona




Thursday, August 14, 2014

And so it begins...

Today's the day I've dreaded and anxiously awaited for many moons. LB's biggest milestone to date. Her first IEP. This is the first of many on our public school journey.

I'm actually ok with it so far. We aren't there yet though. I have reviewed most of the report and there isn't too many things about it that are earth shattering. Today well find out  what therapy she will be offered at school, how many days she'll be going etc. Again, nothing  we aren't prepared for. But  something about the report and the regurgitation of what I tell them is what gets me. Same with early intervention. They just go by what you say... It's strange to me.

Side note: I have this odd 'thing' when I'm near a school setting. I cry. Like, tear up in front if people, cry. Not an ugly cry though, thank goodness, but a cry. So there's that. Same with singing happy birthday- even to a stranger, I cry. Weirdo, am I!

Then let's talk about the fact that my baby girl is about to be 3.  Like wow, how did that happen so fast?? That's sure to make me a slobbery mess. Or let's talk about the skills I wish she would've have gained during early intervention... Well that could be a series of posts in themselves- which I will most likely do. Or should I say, the skills I wish I would've known she needed to gain.

Then to add insult to injury... Let's talk about how decisions made in the next few years could affect her future for the rest of her life. No pressure there, right?! Again, another post to come.

All of it has me a hot mess right now. I barely slept last night.  And my head is overflowing  with  thoughts, anxiety and stress. Granted, this is just one of the bigger items occurring in my life right now. I have a bucket full of others that I wouldn't bore anyone with, but some rather large decisions all seem to be coming to a head for me at the same time. This is the recipe for disaster for a person  with anxiety.

So, I shall write my heart out until I feel at ease; maybe go for a walk; I cleaned crevices and window seals yesterday (I'm a stress cleaner in a nesting phase... No, I wont come to your house :)); or I'll just continue to cry., rearrange things and  eat. Sounds about right.







Monday, July 21, 2014

And then there were 200

I wish I would have been as faithful to the writing as I wanted to be. I wish I would have logged all the memories I want to keep and pics to match. I wish I were better at this blogging thing. I wish I was a little bit taller, I wish I was a baller...bahaha.. it's late. Maybe that was only funny to me.

Alas.. I am not. And I am A-OK with that. You see, it just dawned on me that this is the 200th post! WOWZA! That's impressive in itself to me. I mean heck, I never expected that. 12 a year was a stretch in the beginning.

But now I have a lil happiness to write about. Well a lot really. But to share the most exciting first, and to have proof that I did write about it... we are expecting Baby Bolden Girl #3!! Jan. 2nd to be exact. Yes, we are pumped. Yes, I was sad that it wasn't a boy. Not the hubs though. He is happy with all girls.

Funny how you look back on what's different from the first and then the second and now the third. I laughed when we were first planning the room... LB had the Cadillac of cribs or the Benz - I shall say. We held no expense to high and wanted the best. Ash got a Target clearance special (Guess which has turned out to be the better crib?). And this baby... well I thought we were going to have to go dumpster diving for a minute. But luckily found one at a yard sale for $50. LOL!

LB's pregnancy was documented with bump photos, a beautiful scrapbook, pics of everything and posts weekly. Ash barely got her pic taken.. I am already 18 weeks and am just now writing about Baby B 3 Oh yea, who is to yet have a name.

So, what better way to commemorate the 200th post than to celebrate a new baby girl?! At least this should take me into the argument of why she doesn't have a well documented baby book, right?!

I'll share pics soon.. they are downstairs and that is very far for this preggers tired momma. This post alone has worn me out.

Until next time...
Shona

Well this is a good one....

LB kisses the Baby B 3 announcement pic;
Ash is crushed.