Thursday, May 19, 2016

Mama Hop, Aunt Leanne, and the Sweetest Mother's Day Gift Ever

Our nomadic lifestyle has it's benefits and drawbacks.  One thing that can be difficult is moving to a new community without a support system.  It's easy to feel envious of people who live in the community they grew up in, surrounded by family and friends who are willing to lend a helping hand at a moment's notice.  This becomes even more important when you have children.  It's really nice to know, in a pinch, that Mama Hop and Aunt Leanne will take a 6 hour drive to help us out with the kids.  That's just what they did last weekend.
 We were offered an opportunity to have an appointment with a stellar behavioral psychology team at a hospital in another town.  I've discussed how behavioral psychology has made a huge difference in our lives as it pertained to Josie's eating (read about our G-tube wean here and here).  We've seen, firsthand, how Applied Behavioral Analysis (ABA) principles can help in numerous aspects of life (not just eating) with all of our children (not just those with special needs).  I was eager to take advantage of this appointment to help us learn to navigate Josie's behaviors and to set her up for success as she prepares to enter kindergarten in the fall.  Did I just say 'kindergarten'?!  I need a tears emoji for the blog.

Enter the dynamic duo: Mama Hop & Aunt Leanne!
(They really need capes)
 We used the appointment as an excuse to have a fun weekend together and that's just what we did.  Mama Hop & Aunt Leanne even brought gifts in honor of this little doll's upcoming 2nd birthday (where is that darn tears emoji?!)!
 Our almost-2-year-old cosmetics enthusiast really loved her Barbie Styling Head.  Let's hope this will halt her daily attempts to try and pick the lock on my makeup drawer!
And, of course, there were lots of loving moments between our two divas.  It's a lot easier to put video clips on Instagram @CatfishWithKetchup.  You can check them out under the hashtag #JosieAndLeanneLoveFest (click HERE).
 Mama Hop did art projects with the girls.
 Aunt Leanne and I took them to the park.
 We ate, drank, and grilled out and had an all around fun time.  

On Monday, I was able to make the trek to take Josie to her appointment while Mama Hop and Aunt Leanne watched the other two girls and made sure Merryn made it to and from preschool.  We plan to implement an intensive behavioral therapy plan with Josie over the next few months and I'm hoping to be able to share some information on the blog as I learn more about the method.  One of the things I absolutely love about having a child with special needs is that she provides me with the opportunity to hang out with, and learn from, many knowledgeable and fascinating health and developmental experts.  I truly find it to be a stimulating reprieve from the monotonous daily tasks of motherhood.

Now on to the big surprise Mother's Day gift from Mama Hop.  As you may or may not know, Mama Hop is quite artistic.  She has her undergraduate degree in art (and her Master's in Special Ed) and she has also taught art education.  Now that she's retired, she still enjoys artistic endeavors.  For Mother's Day, she surprised me with framed sketches of the 3 girls.
 She was worried I wouldn't recognize those faces.  Are you kidding me?!  Biddy (Lydia) identified all 3 faces without hesitation!
 Since the frame has hooks, we found a perfect spot for it above our bath tub in our master bathroom.  The girls' bath towels hang underneath their precious faces.  
I'm so overwhelmed by how thoughtful and perfect the gift was.  We're also incredibly grateful that Mama Hop and Aunt Leanne are always ready to come help us out!  Stay tuned because YaYa and Papa will be visiting soon and then we will be heading to Mama Hop's house for a birthday celebration with Aunt Leanne!

Sunday, May 15, 2016

Our First "Baby"

She was our first "baby."
 I used to fix her hair and have professional photos taken of her.
 She was only 4lbs but she was as protective as any rottweiler.  She thought she was ferocious.
 She was the only dog I've ever had.  She was a part of our family.
She was our first "baby."
And she will be missed.
Rest in peace, Lillian.  

Sunday, May 8, 2016

Mother's Day: Memorable Life Lesson Learned From Mom

I once heard it pondered if God gives children with special needs to really incredible people or if having a child with special needs turns you into a really incredible person.  Well, I didn't know my mom before Leanne graced her life but I can testify that she's an incredible person, either way.  
Mama Hop and baby Leanne

One of the most cherished qualities that my mother demonstrates and tried to instill in us is empathy.

Empathy is defined by Merriam Webster as the feeling that you understand and share another person's experiences and emotions: the ability to share someone else's feelings.

I first recall my mother teaching me about empathy when I was in elementary school.  There was this girl I'll call "Sally," who used to pick on my girlfriends and I mercilessly.  Every day, she'd target us with snide remarks and insults.  It was a little scary facing her, not knowing what sort of put downs she had in store and which of us she would focus on that day.  I remember coming home to my mom and lamenting about this situation.  I'm going to omit details that could potentially identify or hurt this individual here, but my mom sat me down and talked about Sally's life.  She had encountered hardships and obstacles that my privileged friends and I had never had to experience.  My mom explained that when people are wounded, they will sometimes attempt to tear others down to feel better about themselves.  And knowing that there were so many variables in Sally's life that made her feel inadequate and isolated, my mom challenged me to empathize.  She asked me not to look at the situation as though I was a victim; but rather to identify with Sally's emotions.  In doing that, how could I try to make Sally feel better about herself?  I went back to school, armed with my mom's advice, and I began to disarm Sally with compliments.  And you know what happened?  Sally backed off.  She softened.  And I learned a very valuable lesson: When someone is exhibiting a behavior that is hurtful, I try to put myself in their shoes and I try to understand the motive behind that behavior.  Genuine attempts to empathize will lead me to more patience and peace; and in turn, it will often pave the way for conflict resolution.
Altruism is likely driven by empathy - our tendency to "resonate" with the emotional and physical states of other people. (Source)

I've referenced my mom's commitment to altruism and to instilling this value in my sister and I.  I noted that Leanne was never exempt from charitable endeavors; my mom expected her to use her gifts and resources to help others, exactly as she expected me to do.  Accompanying my mom to deliver Meals on Wheels, decorating the church, and picking up an underprivileged student from my mom's class and having him/her accompany our family out for a movie and a Happy Meal were ways that my mom attempted to broaden our sense of empathy.  She wanted us to experience other sides of life so that we could proceed in our own lives with a greater understanding and appreciation for the plight of others.
This is truly one of the greatest lessons I learned from my mother.  And she taught by example.  She taught by offering us hands-on experiences.  As I now walk down the path of motherhood myself, I hope to equip my daughters with this valuable perspective that my mom instilled in us.  
Happy Mother's Day!  

Monday, April 25, 2016

Essential Down Syndrome Podcasts

I had the pleasure of attending the National Down Syndrome Congress Convention last summer (you can read about that HERE) and while I was there, I acquired a new Down syndrome sibling idol, Dr. Kishore Vellody.  Dr. Vellody is the Medical Director of the Children's Down Syndrome Center at the Children's Hospital of Pittsburgh at UPMC.  He also has a brother with Down syndrome.  Are they the sweetest, or what?!
Dr. Vellody spoke at one of the adult sibling seminars I attended and I was so impressed with his knowledge and delivery; he was relatable on a level that can only come when one truly has the personal experience with Down syndrome that Dr. Vellody has.  So I was very excited to discover a FREE series of Down Syndrome Podcasts hosted by Dr. Vellody.

Here's a confession for you:  This was my first encounter with podcasts.  I literally had to have Travis show me how to find them on my phone.  Yeah, I know, I know.  It's 2016.  Get with it, already.  But even podcast newbies like myself should totally check it out because they are brief (10 minute-ish) talk radio style segments discussing so many issues pertaining to Down syndrome.  Everything from heart surgery to constipation to sleep apena to behavior to puberty/sexuality issues to special needs trusts...and MORE!  All ages are covered.  Experts are brought in to offer very specific insight on each topic.

The first podcast I listened to was the one on potty training and it was a game changer for me.  Do you ever wonder why your child is supposedly potty trained at school but not at home?  Dr. Vellody explained that it's because the school parades the children to the bathroom on a schedule and that little ones with Down syndrome usually require schedule training/prompts.  Self initiation doesn't happen until much later for our chromosomally enhanced kiddos.  That was a major lightbulb moment for me.  Josie is very much schedule trained and now I realize that's "normal."  Leanne uses the restroom without being prompted so I know that someday, Josie will, too.  But it just takes a little longer to get to that point.  Thank you, Dr. Vellody. 

This afternoon, while walking Josie to preschool, I listened to a podcast about Sinusitis - an issue we just discussed with our ENT on Friday, as Josie has been battling chronic congestion all winter.  It was helpful to hear that it's not uncommon in Down syndrome and to listen to the factors that contribute to sinus issues and to learn about the available treatment options.  

We always like to share any helpful resource we discover and this one is something that many people who love someone with an extra chromosome can benefit from.  We give it a big thumbs up!
For more information on these essential Down syndrome podcasts, click HERE or HERE.

Sunday, April 24, 2016

Redeeming a Bad Mom Day

The other day I received a message from an Instagram follower asking me for advice on how I maintain my patience and positive parenting.  The timing was ironic because just that morning, I had sent Travis and email venting about how, as a mother, you lose yourself feeling like a servant for everyone else and that sometimes I feel like my sole purpose in life is to load and unload the dishwasher and do laundry - over and over and over...I was definitely having a less-than-positive moment where I felt lonely, isolated, and overwhelmed.  Suffice to say, I think all mothers have those days.  And often, that is not the side we show on social media because 1.  When my house is a wreck and my child is being defiant and we're running late and I'm on the verge of tears, I generally don't stop to take a photo and post it to Instagram.  2.  The blog/Instagram are the tools I use to document the moments I want to remember.  No sense in preserving the moments I'd rather forget.  3.  Because my children will someday be able to access anything I publish online, I try to be mindful not to write anything that will make them feel like they were a burden.  It's a fine line between keeping it real and keeping the big picture in mind.
But that particular day, I was truly proud of myself because I turned my day around.  How?  I uploaded the photos off of my camera - something I hadn't done in 3 weeks.  Seriously, I used to rush straight to the computer after taking photos so I could see what I came up with because it would bring me such joy.  Somehow, in the chaos of life, I'd just stuck my camera back in the cabinet and forgotten about it.  It was just a little thing but taking the time to do it really reset my perspective in a positive direction.  The question from the Instagram follower challenged me to think about "mom tips" that help me on hard days.

1.  Do Something For You - Motherhood is frequently a sacrificial state.  That's just the reality of it.  But it's amazing how recharging our own batteries in small ways can lead to a better day.  I love writing and taking pictures but I don't always have the time or energy to delve into those pursuits.  One thing I do when I'm starting to feel myself getting stressed is to listen to my own music.  It's kind of funny but as soon as we get in the car, the girls start yelling out song requests.  Generally, I'm happy to oblige.  But some days when I'm in a foul mood, I don't want to listen to Taylor Swift for the 8 millionth time and I tell the girls "Today, we are going to listen to Mommy's music on the way to school."  They may grumble but they accept it.  And it makes me feel a little better.  
2.  Wake Up An Hour Before Everyone - My day always goes better when I've had a chance to drink my coffee in peace, shower, and slap on a little makeup before having to face the demands of motherhood.  Sometimes the idea of getting up early is outrageously unappealing but I always feel better when I do it.  
3.  Focus on What You do Well - I'm not very good at cooking.  It's incredibly stressful for me to try and focus on a reading a recipe, measuring, keeping track of timing, managing multiple burners, and setting the table while my children are executing every single attention seeking ploy they can fathom to try and derail my Martha Stewart ambitions.  So, many nights, I choose to give my children a sandwich and some sliced cucumbers with ranch dip rather than ending up in tears, slumped against the cabinet, drinking wine straight from the bottle while the smoke alarm goes off.  So I stink at cooking, but I'm pretty good at cleaning and keeping the place relatively tidy.  That's the domestic talent I chose to focus on (most days).  Likewise, I'm not creative.  I don't throw Pinterest-worthy parties. I don't make Pinterest-worthy crafts.  But I sit at the table and color with my kids.  We do puzzles and worksheets and we play educational games.  I focus on what I can do.

4.  Go Easy on Yourself - Generally, having an hour to myself before the kids wake up makes me happy.  Having a tidy house makes me happy.  But some days, these things just don't happen.  That's okay.  There's always tomorrow.  
5.  Seek Support and Wisdom From Other Mothers You Respect - My friend, Aleksandra, has two daughters in college and they are the most lovely, poised, intelligent, kind, and well-mannered girls.  Aleksandra is someone I have on speed dial when I need parenting advice.  She always offers exemplary wisdom or she just talks me down from the ledge.  Either way, it's invaluable.  You can't Google that kind of support.  In addition to Aleksandra, I have many other mom friends who are currently in the trenches with small kids and the solidarity we have is often what gets me through the day.  
6.  Find Someone Whose Disposition You Admire and Try to Channel Those Qualities - As us neurotic, type A, frustrated perfectionists tend to do, I get tangled up in the details of the gap between my image of the ideal, and the reality.  I frequently take things to extremes.  One minute, I'm being sassed by a small child and the next thing I know, I'm desperately trying to formulate a plan to keep her out of the juvenile detention center because if she acts this way now, imagine what sort of trouble she'll be at 15!  That's when I think about Travis.  I assure you, for every one thing he worries about, I worry about a thousand.  He's just super laid back.  He doesn't worry.  He doesn't stress.  He's incredibly composed.  Always.  When I get caught up in stressing about Josie's delays, he reminds me of how far she's come and he helps me snap out of it.  He doesn't lose sleep over anything.  I always tell him, in my next life, I want to come back as him.  
7,  Try to Maintain Perspective - This is where it helps to have a mom, mother-in-law, friend, or neighbor with grown kids.  When it's 8am and you're already counting down the minutes to bedtime, they are the people who can remind you that while the days are long, the years are short.  You can read more about this on an old post titled, "Getting Through the Hard Days" .  I also find Pinterest quotes on Motherhood really inspiring - sometimes I even slap them on photos of my own kids.  I especially love Brian Andreas quotes.  And another writer whose motherly wisdom I enjoy is Jen Hatmaker.  Check her out on her blog or read my personal favorite article of hers HERE.  
The bottom line is that I don't know what I'm doing anymore than anyone else does.  We all have our good days and our bad days with this parenting thing.  But I try to keep things positive because I love these funny little people who interrupt every conversation I attempt to have, keep me with an endless supply of laundry and dishes to do, and heck, they even watch me pee.  And when I think about the day that I can run to the grocery store, purchase ingredients, bring them home, and cook in peaceful solitude, that makes me kind of sad. So most of the time, I try to enjoy the chaos and laugh at the ridiculousness of it all.   

Monday, March 28, 2016

Josie's 6th Birthday

Six years!  Would you believe we've been blessed by this little wonder for six years now?!  
The song accompanying the customary birthday slide show is one of her current favorites: "I met a girl" by Sam Hunt.  It's even more special in light of the fact that Travis created custom lyrics for Josie.  He started singing over the song on a recent road trip and I was roaring with laughter and incredibly impressed by his creativity.  If I could have talked him into singing it for the world, I would have.  Something about "I met a girl with velcro shoes and pink glasses..." It mentioned singing animals and seated dancing and all of the signature elements we love about Josie.

Josie, you illuminate our days with your smile and affection.  Our lives are enriched by your perspective on the world.  You are the most joyous of blessings and we are so grateful to celebrate six years with you.  Happy Birthday!

Sunday, March 27, 2016

Happy Easter from Leanne and Merryn

brthday girl

fror herl leanne love