Hmm- I suppose even after being divorced for a few years, it still feels like there’s a noticeable gap in that “family” opening introduction. God continually is redefining and refining my thoughts and feelings surrounding single parenting, step parenting, blended families, and the call for all of us to accept and comfort the broken families all around us. I don’t want to solely focus on the struggles of single-parenting, or the frustrations of dealing with life’s big “D’s” (disabilities, divorce, death, damages, disease) things that can happen in life that are beyond our control- but I wanted to get it out there so you can see some surprising treasures I’ve gathered in my journey- as a first-born daughter, a sister to quite a group of characters (including a very “special” one ); a pastor’s kid (PK), a friend (sometimes a good one/sometimes not), a single mom (sometimes a good one/sometimes not), an ex-wife (we won’t even go there LOL!) and now a single woman (Blog idea: Dating Woe’s and Whoa’s)
I’ve always had a huge heart for family and with a divorce rate of 50/50, even in most churches, I believe God is opening my eyes to new ways to pray for these vital entities. I also know that marriages that have a child with special needs are particularly tested. (So to those of you faithful to that calling- you are especially in my prayers!)
God is great at divining new ways to get us to explore our faith, make it our own, build up our trust, and prove time and time again that He will never (in no way, by no means, on no account, not at all) leave or forsake (abandon, desert, disown, relinquish, release, give up, dump, ditch, discard, surrender, or turn away from) us. I’m exited to share bits of our past, present and future as they overlap with Bethany’s stories.
By day- I work in Human Resources, and enjoy working with agencies that encourage their employees to find healthy work/life balance; by night I am mother extraordinaire, who excels at cup cake baking, Wii Fit, Super Mario Smash Brothers, cuddling, making up silly songs, shopping clearance, and avoiding laundry until Saturdays.
When Bethany Came Along
I suppose having a little sister coming along while in college might be potentially embarrassing or shocking to some. For me, I assumed my parents were still “making love” after 19 happy years of marriage and it seemed like it was every few years during my life, it was just a natural announcement. “God is blessing us with another baby!” I believe with this announcement was a fleeting thought that “my mom’s getting a little older” and “I hope everything goes ok.” I know my parents had always wanted a large family and thought Bethany coming along was a nice little bookend to my mom’s dreams of 3 girls and 3 boys.
Seeing Beth in her first moments after the birth, remember thinking “awww- how cute- her little slanty eyes kinda look like a little alien staring back at me.” I didn’t really comprehend it was foreshadowing of the diagnosis to come- although the thought “I wonder if she might have downs syndrome” did slide through my mind. I wasn’t worried, even when we found out, I was just relieved she didn’t have any other immediate health concerns. She would live! She didn’t need to be in a hospital!
I was four when my sister died from cancer, and I didn’t know any one with downs syndrome (just Corky, on TV and he seemed so engaging) but I was relieved it wasn’t a terminal disease! I was so wrapped up in my college life, classes, my boyfriend, a job; that I never really stopped to access the impact Bethany would have on our family.
I didn’t think about my parents having to make long term plans for her care and well being, worry about heart and thyroid problems, delayed speech, low muscle tone, cognitive delays, or even early onset Alzheimers. I didn’t realize my parents needed time to grieve the loss of making the “typical” plans and dreams that most parents get to revel in their newborn’s future….. but not because I wanted to avoid her, I was head over heels in love with this new little sister. I just never stopped to think how her upbringing might be a little different than mine.
I had never grown up seeing anyone make fun of people with disabilities, so I wasn’t even worried she might not have any friends. It didn’t cross my mind that she might not read, drive, or even grow up and get married, etc. I was naive to the humongous challenges and the wide range of effects it would have on her life. I saw my mom throw herself into researching early intervention plans, nutrition, physical stimulation, and learning techniques. I wanted to help, but I needed some specific ideas of how and what to do. So- some advice- If you’re feeling helpless, ask 3 specific things you can do to help. I found implementing ideas fun and rewarding.
It’s hard to compare children with disabilities- each child is unique and developmental achievements are on an immensely different scale! But for Bethany, even though she was a “little” delayed, (and we noticed with more one on one prompting and encouragement) she reached the milestones of sitting up, crawling, and walking, within a age appropriate level. (I’m sure my mom could tell you if they were bittersweet or not.)
Before her first birthday a ”game” we loved play with her was the “Copy Me”. She would sit on the floor, all of us surrounding her, and she would do something, like clap, bounce up and down, touch her head, pat the ground, wave her arms, etc. We would parrot her movements and she would giggle, belly laugh, and smile, loving the feeling of being in control of the whole family. She even began sight reading when she was 18 months. She couldn’t talk yet, but we would spread out the cards on the floor and ask her to point to Mom or Dad or Jesus or Sarah. We clapped like crazy when she did it and her smile lit the whole room. Those games, and her engagement and understanding, lessened my worries of her development even more. She was funny and she KNEW when she was being FUNNY!
Fast Forward 10 years!
Bethany makes me smile every time she recites a Bible verse from MEMORY, she makes me laugh when she tells a joke from the tv show Full House, and she makes me beam every time she calls me , “Sisztahh!”
She is a great Aunt to my kids (they often wake up asking for their Aunt Bethie in the mornings and Cohen says, “I Need my Beff”) and I see her learning and growing every year in ways that encourage me and hope encourage you! For others out there with a sibling who is faced with a disability, honestly, there have been some fears for me to work through. (It’s easier to be brave from a distance)…I encourage you to get close…nothing in life is to be feared with the Lord by our side. Instead, look at it as a challenge to be understood.
As I’ve seen my own daughter reach milestones, the realization hit me that at half of her Aunt’s age, Finley may start passing some of those developmental targets quicker and pass up Bethany in some ways. (ie- Finley’s already almost as tall as Bethany and she is already reading some of the books Beth read just last year.) I don’t want my mom to be sad about that. I don’t want my ex-husband to worry that Bethany’s slightly slurred speech will impede the verbal development of our children. I don’t want Bethany to develop early onset Alzheimer’s at an age where most of her siblings are mapping our our careers and families….. I don’t like to think that Bethany might not get to experience the independence I so often take for granted. But guess what?
I know that God is with her. I know that God is with me. I know that God sees the complete eternal plan and picture of Bethany’s development and mine!
Remember, even when the world’s picture of a “perfect” family seems far from reality- The Maker of your family will (in no way, by no means, on no account, not at all) leave or forsake (abandon, desert, disown, relinquish, release, give up, dump, ditch, discard, surrender, or turn away from) you or your disabled loved one.
We often play the game “I Love You More…” Finley *4 said “I love you out to outer space and whatever past that!” Cohen *2 said “I love you all the way to McDwonalds Pwayland- so you should take me there.”
Cohen-2- “Mama- when can we go to the jewel store?” Me- “Why, Buddy?” Cohen- “Cause I want to buy you some diamond jewels!”
Finley, “Mommy, how old will I be when my momo’s start to fall down?” (we’ll leave it to your imagination as to what momo’s are.)
Bethany -7- and Finley 2- were riding in the car with me, when my Dad, Jeff, pulls up at a busy intersection. Bethany, who had recently starting spelling everything she saw, yelled, “Hey, that’s my Dad! D-A-D! Dad.” Super smart Finley gets all excited and says, “Hey, that’s the same way you spell my Dad’s name too! D-A-D!