26 October 2016

A hole in my heart

Today is October 26th, 2016. 

Matthew is now five and Luke is three, so I've celebrated the actual birth of both and a combined eight birthdays between them.  Each of those celebrations has been so meaningful to me as their mother as an opportunity to celebrate their lives, accomplishments, express how much we love them and really just to thank God for sharing them with us. 

Four days ago, I turned 35.  Although Dustin prepared a beautiful dinner for me, complete with gourmet cupcakes from a local bakery, I was able to visit with my sister and my mom and brother took me out for dinner and then a little shopping spree, I didn't hear from my dad.... as was the case so many years growing up. 

Each year on my birthday, a part of me, deep down inside always feel a sense of emptiness around the raw fact that my dad doesn't celebrate me.  Or maybe it's even deeper than that, it's probably more along the lines that he doesn't even acknowledge my existence.  Most days I'm able to bury the hurt and loneliness in that special place for parents that he's never inhabited, but each year on my birthday (and especially since I've had my own children), I just struggle with how little he's ever made an effort in my life.  It's so hard for me to fathom a time when I wouldn't go out of my way to tell my kids I love them and I can't understand how he could just forget about me everyday, but even more so on the one day of the year that I would assume he might be even more called to reflect on the day I was born. 

Throughout my lifetime, my dad was the most involved when I was a young, school-aged girl... a time when I recall him picking me up for more than half of his court ordered visitation weekends.  Many of those memories were tainted however by the fact that he usually would have a new girlfriend or the two times that he showed up with a new wife - the first was "Brenda".  They weren't married long, but she had a baby girl while they were married - he told me that he wasn't the father.  Her name was Leann... I've always wondered if she was really my sister.  After he and Brenda were divorced, I believe that Brenda may have given her up for adoption...  There was one time when he took us on his own to fly kites and another when he took us sled riding at some point before "Diana".  When he married Diana, his 2nd wife after my mom (4th wife in total, but one that he's been married to for over 20 years now and whom he had another daughter with... a half-sister I barely know named Chelsea) is when he'd pick us up more regularly for maybe five years or so, but when my mom, sister and I moved about an hour and a half from him when I was in 9th grade, we rarely saw him... probably fewer than 5 times per year.  I began to see him more frequently when I started college about 20 minutes from his house, but seemingly only because I made the effort to go see him and our relationship sort of ended my junior year in college when he said some really hurtful things to me and we never completely made amends.  As I reflect on our history and the significant amout of baggage in our relationship, I truly believe that Diana was a big part of what went wrong between us... there were so many times that I caught her in a lie as she relayed information to my dad, times when I found letters she'd written to her friends portraying my mom in a negative light and other instances where she worked hard to manipulate the situation to make others look bad and attempt to inflate her position.  I didn't invite them to my wedding, because I couldn't envision him walking me down the aisle... especially after so many hurt feelings, lack of apology or even a willingness to have a real conversation about what went wrong between us so we could move forward with even footing. 

Despite all that's happened, I wish things could be different. 

I wish that he'd pursue me as his daughter... someone whose opinion he held in high regard.

I still wish he'd sweep me off my feet as every daddy should do for their little girl - ride in on his white horse and rescue me from the loneliness that his absence has created in my life.  In my dreams, he would have picked me over all of the other women he's chosen, even if it would happen just once, when the circumstances were important to me.  That's a tall order for someone who doesn't even think of me on my birthday. 

The only place I know to go from here is to trust in my Heavenly Father.  To know that He has a plan for my life - one that I don't have to understand, but one that I have to trust is meant for me.  Maybe knowing the sort of sadness that abandonment can bring will be the catalyst in pushing me to always let my boys know how much they mean to me and more importantly to always make the effort to help them achieve their dreams.  Understanding the way an insignificant father figure can impact a child's life helped me to be a strong supporter of Dustin taking on a vital role in raising Matthew and Luke, one that resulted in me pushing him to be a stay at home father for over two years after Luke's open heart surgery (a role that I selfishly wanted for myself). 

This life lesson has taught me that mothers and fathers are equally important in the lives of children, regardless of whether they're babies, adolescents or even grown adults with children of their own.

04 November 2014

"Uncovering" Talent

I read an article today on leadership published by Deloitte University’s Leadership Center for Inclusion entitled Uncovering Talent: A New Model of Inclusion.  The paper was written with the corporate world in mind but as I read, I found that their model also applies some to my life as a mother to a son with Down syndrome.  The basic tenant of the article centered on a term called “covering”.  Covering is defined by the concept that individuals with known stigmatized identities made a “great effort to keep the stigma from looming large”.  One of the examples cited by the authors was about how President Franklin Delano Roosevelt ensured he was always seated behind a table before his Cabinet entered.  President Roosevelt was not hiding his disability – everyone knew he was in a wheelchair.  However, he was covering, making sure his disability was in the background of the interaction.

The article made me ponder the concept of “covering” in regards to raising a child with a disability, particularly one with Down syndrome (Ds)… what is it about being “different” that people don’t like?  I often find myself reflecting on what it would have felt like to have had a child with Ds born in an earlier decade… a time when my sweet boy would have been called an ugly term like “mongoloid” or an “imbecile” by those closest to us – our friends and family… a time when our trusted doctors would have suggested that he be segregated from our family and institutionalized so we weren’t “burdened” by his differences… a time when he wouldn’t have had the right to a meaningful education provided by educators, some of whom would have likely been neighbors within our own community.  Just think about how parents during those times were required to “cover” for their children because our society was so incredibly far from the concept of inclusion… I’ve even heard extreme stories about how some families would lock children with Ds in their bedrooms when they’d host friends and family so others wouldn’t have to “deal” with them.  I’m glad I live in a different world today when it comes to raising a child with special needs.   

Recently I had someone tell me… “I applaud you for how you and your husband care for your son [with Down syndrome], it must be a lot of work”… my response was “It is a lot of work, but its no less work than it takes to raise our typically developing son, it’s just that we’ve had to focus on different things.  Regardless of how much work it is to be a parent, raising any child is truly a labor of love and I wouldn’t trade either of my children for the world.”  The joy that I derive from even the most insignificant moments of life with my kids is unlike anything else I’ve ever experienced… both of our kids bring different personalities and strengths to our family and the way they complement one another has been an amazing gift from God that touches my heart each and every day. 

For different reasons over the last few years and on a constantly evolving continuum, I’ve pondered the idea of inclusion for children with special needs amongst one another and also amongst their typically developing peers.  The more I’ve learned, the more I’ve felt moved to share the value of inclusion for children like Luke.  Although I didn’t know there was a defined method to uncovering talent by utilizing the axes mentioned below before today, for quite some time now, I’ve been working in an attempt to improve the environment for inclusion when it comes to Luke and how he’s received by others.   

The concept of “covering” is further defined within the article above along four axes amongst which individuals can cover:

Appearance… early on Dustin and I recognized the fact that Luke having Ds would never be a secret… from the moment that he entered the world, his physical features would always be a tell-tale sign to those who looked at him.  It doesn’t mean that he’s any less beautiful, just that while he closely resembles his brother, he also has some subtleties that align him with others who are affected by Ds.  When it comes to mannerisms, Luke has already displayed a natural tendency for affection, especially when it comes to sharing the most incredible hugs and the kid has a strong preference for music… any and every beat he hears seems to overtake his soul and results in bounces, sways, head bobs, rhythmic claps and any other way he discovers to express his particular groove.  I can see how the intensity he feels towards affection and music could possibly be overwhelming to some and while I think it will be important for us to teach Luke how meaningful it will always be for him to be true to himself, there is also value in managing your own personal space and the personal space of others.   

Affiliation speaks to the desire to hide a true identify and a related attempt to negate associated stereotypes.  What I’ve found interesting about the common stereotypes connected with Ds is that they are just that… stereotypes!  One of the best experiences I’ve had as a mother to a son with Ds is watching him exceed the limits that outdated stereotypes have placed on him and others with an extra 21st chromosome.  There is no doubt that Luke has exhibited delays in many areas, some of which could even be defined as significant delays when you compare his progress to others his age on a typical developmental chart, but Luke is ABLE and in a positive, supportive and inclusive environment, Luke will succeed and will maybe even exceed the limits placed on him by others. 

Advocacy… I’ve been fortunate to have joined the ranks of special needs motherhood behind decades of prior parent advocates… others who have paved the way and stood up for the rights of their loved ones affected by a disability or delay.  It’s important to me to advocate for equality and inclusion and I’ve been incredibly blessed with friends and family who have embraced our efforts… our family even had over 20 people drive to Cleveland this past summer to join us for the annual Buddy Walk to support Down syndrome in our community.  I had a Facebook friend who shared nearly every one of my 31 educational tidbits about Ds recently during “October is Ds Awareness Month” and I can’t tell you the number of people who have told me they have a heightened awareness for Ds now that they’ve met Luke… I pray that their interaction with Luke will inspire them to be his advocates as he grows older. 

Association with others who are parents to young children with Ds or those who are parents to children with other special needs has been, at times, the lifeblood that’s sustained me when the goings been rough.  From a personal perspective, early on in our diagnosis, association with others played a key factor when it came to understanding and accepting the role that Ds would likely play in our lives.  Support from others who have stood in our shoes has been invaluable in knowing that we aren’t alone on this journey!!

03 November 2014

Mommy, that girl looks like my brother, Lukie Dukie

It happened.  Last night, Matthew recognized that his brother looked “different”.   

Over the last few years I’ve become friends with dozens of others mothers across the country to children with Down syndrome (Ds)on Facebook.  I’ve also “liked” and “joined” dozens of pages and groups specific to Ds.  These resources have been invaluable to me as I’ve tackled the learning curve associated with becoming the mother to a child with special needs and an enormous side benefit has been the presence of their beautiful children in my newsfeed every day.  I’ve literally watched them grow, take their first steps, communicate via sign, etc. I know about them as individuals and I’ve enjoyed them immensely!   

Last night Matthew was sitting in my lap as I was scanning my newsfeed while we were watching TV and out of the blue he pointed to the photo of a little girl about Luke’s age with Ds on my phone and said “she looks like my brother”.  I was caught off guard and asked him to repeat what he’d said like I hadn’t heard him the first time… more definitively he told me “mommy, that girl looks like my brother, Lukie Dukie”.  I tried to probe him, to see what he’d identified as looking the same to which he responded, “I don’t know”.  I never was able to get him to tell me how they looked alike… he went back to watching TV while my heart sank a little.  He wasn’t derogatory or negative… he was actually quite matter-of-fact.  Ever since our prenatal diagnosis of Luke having Ds (which happened the week that Matthew turned one year old), I’ve wondered how having a brother with Ds would affect him… obviously I’ve always known that Matthew would recognize his brother was different than him at some point, I just never knew when it would happen…

Dustin and I, our friends and family, and Luke’s doctors and therapists (3 of whom are physically in our home every week) openly talk about Ds, it’s a part of our life now and it’s not common for a day or two to pass without someone mentioning the term.  I know Matthew’s heard it a hundred times or more so I’d always just assumed that he instinctively understood what it meant as he’s overheard so many of our conversations.  I let the conversation pass last night but resolved that the next time Matthew mentions someone “looking like his brother” to specifically talk with him about Luke having Down syndrome.  Considering he just turned 3 a few months ago, I’m not planning to go into great detail about what it means but am hoping that providing a name to explain the commonalities between Luke and his friends with Ds will help Matthew to internalize that our family isn’t alone when it comes to loving someone with Down syndrome.

02 November 2014

Thank You Mr. McKay!

I should have posted this months ago... when we participated in the 2014 Northeast Ohio Buddy Walk back in July, Luke had a very special monetary donation to our team, it was from a generous young man who we know as a Jersey breeder from the dairy world who left this comment along with his donation:

"Luke, You are an inspiration to my everyday life. When I look at things you have overcome and always with a smile on your face, it makes me strive to live life a little happier. You and your family are always in my thoughts and prayers."

Sam McKay, I want you to know that this comment has brought me to tears on more than one occasion (today included) and times when I'm feeling down in the dumps, I've come back to this comment to raise my spirits!  Please know that our family appreciates your support and kindness!  Hope we see you soon!!

05 September 2014

What is Early Intervention?

If someone asked you to define "Early Intervention" off the cuff... what would you say?
  • Stop something before it starts?
  • Take someone's hand early in a process and guide them towards success?
  • Interrupt an act before a potentially negative consequence ensues?
If you would have asked me to define "Early Intervention" a few years ago, I likely would have come up with one of the easy answers above.  If you were to ask me today, however I'm still not exactly sure how I would respond, but it would be be specific to my experience as Luke's mom and would go something like this...

"Early intervention is federally mandated by Part C of legislation entitled Individuals with Disabilities Education Act or IDEA, which was last amended in 2004 and is executed by the US Department of Education, Office of Special Education Programs.  This legislation passes the responsiblity to each of the 50 states and in Ohio, it's called out in our administrative code, where the Ohio Department of Education then passes the buck [literally] to each of our 88 counties.  Part C of IDEA is what mandates an Individualized Family Service Plan (IFSP) to those with disabilities between birth and the age of 3, when they transition to preschool and graduate to a full fledged Individualized Education Plan (IEP).  I've been studying IDEA and Ohio's Administrative Code pretty heavily lately in an attempt to understand what Luke is entitled to when it comes to developmental and educational services and I must say it's a pretty overwhelming task to try to understand and internalize legal mumbo-jumbo.  I'll continue reading and networking with other parents as I continue my quest to learn how to be the best mom I can be and will update with more on early intervention and how they're helping Luke to meet his full potential in the future!"

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Early Intervention Individualized Family Service Plan and Service Delivery.

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Definitions.

25 August 2014

1st Day of Preschool for Matthew

Today was Matthew's first day of preschool... it took some pretty direct questioning on my part, but here is his recap of the afternoon:



"I made a bridge for my truck and trailer.  It fitted.  It was just for me.  I hooked up my truck and tailer and hauled a car over the bridge.  Ms. Ranita read lots and lots of books.  I cried because I missed you.  I rode a 4-wheeler on the playground and it drove me.  I played puzzles, two of them.  They were animal puzzles.  I ate Goldfish and drank all my apple juice.  Me and my friends played with Play-Doh and they drank apple juice too.  That's all we have"



Matthew did cry when we left but his teacher reported that he recovered pretty quickly and he was fine for the rest of the afternoon.  Also, on the way home he got upset because he couldn't see his "pack-pack" (aka backpack) which made him think he left it at school... that also made him cry!  Once he realized it was next to him on the seat he was excited to show us the papers in his folder!  He also shared that he's excited to go back to school later this week!

Way to go Matthew!  You're one awesome little guy! 

19 August 2014

Matthew is 3!

Happy birthday sweet boy!  Meeting you was one of the best days of my entire life and I treasure every moment, kiss, smile and laugh that we share! You are a dream come true!!