Any parent will tell you that raising kids is HARD. It doesn’t matter if you’re Super Mom, Super Dad or just super duper, parenting doesn’t always turn out the way you always dreamed of. It doesn’t matter if you are a parent to a new baby, a teen baby, or a fur baby, parenting requires a lot of love and patience. Parenting a child with special needs brings an entirely different set of skills, emotions, and experiences to the parenting game. I recently asked a loved one what it was like raising a child with special needs. She couldn’t find her own words to accurately describe her honest feelings, so she introduced me to a poem that gave me a better understanding of what it’s like raising a child with a disability.
WELCOME TO HOLLAND
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability — to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It’s like this…
When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans… the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives.
You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease.
It’s just a different place.
So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place.
It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, ” Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
Holland may not be Italy, but it is just as beautiful and worthy in it’s own unique, special Holland-y way. My nephew may not be the ‘typical’ kid on the block, but he runs just as fast, laughs just as loud, and loves just as hard as all the ‘regular’ kids. In his short little life, he already beat the odds by surpassing doctor’s expectations. Although a bumpy road lays ahead, his heart of gold and contagious, ear-to-ear smile makes it hard to see the difference between Holland and Italy.
I’ve seen the hardships that parents of special needs children face, but I can never imagine how it really feels. I admire the strength it takes to wake up everyday to keep on keepin’ on, with challenges, unknowns and all. I admire the patience it takes to tackle the same uncontrollable, obstacles over and over and over and over again. I admire the relentless spirit of never letting any disability stop any one from having an active, fulfilling life. I am in awe of the courage it takes to live with the struggle, but never allowing it to blemish the present or cripple the future. These parents are the closest beings to saints that I have ever encountered.
I find myself in the midst of the very situation that I’ve been dreading for the last few months-planning Cameron’s first birthday party. It’s not the actual party planning I dread. I dread having my precious little baby turn one years old. Although I am excited about celebrating this milestone, it makes me sad that Cameron is almost 1. It’s beginning to sink in that time flies even quicker the second time around.I don’t know if he’ll be my last baby, but just in case, I’m making it a point to soak up every second I spend with this little guy, but it still feels like it’s not enough. Times like these make me wish I had a video camera recording every moment of our lives so I could relive all these precious moments whenever I want. As I am planning Cameron’s first birthday party, I find myself reminiscing about the past year. I’ve compiled a list of the top 10 things that I will miss about baby Cameron.
1. Cradling a sleeping baby
Oh how I love this moment. I can spend hours holding baby while studying his peaceful face, watching him breath and wondering what he is dreaming about. Also marveling at how light and delicate baby feels. Now when Cameron falls asleep in my arms, I can only hold him for a few moments before my arms need a break. It’s funny how you forget how small a baby is until you actually hold a tiny, little newborn.
2. Baby Feet
One of my favorite things about babies are their tiny, little feet and their tinier, littler toes. I especially love how they fit into the palm of my hand. I can’t resist the special scent of these tiny little things-sweaty and sour all at the same time. Yummy! Baby loves it too since he’s always nibbling on his toesies every chance he gets.
3. Toothless Grin
That gummy smile paired with that high-pitched squeal. To. Die. For.
4. Baby Hair
I love running my fingers through Cameron’s baby soft, spikey hair. It’s so downy soft that you can barely feel strands of hair.
5. Baby Babble
Hearing a babbling baby speak gibberish is one of the funniest things ever. Cameron is very vocal and always wants to be a part of the conversation by making his presence and opinions known. Even though he doesn’t make any sense, it’s still so fun to listen to him squeak, squeal and squawk.
6. Baby’s Firsts
I love celebrating all of Cameron’s firsts. First smile, first laugh, first time rolling over, first time sitting up, etc. It’s always so exciting to witness Cameron doing something for the very first time. I know he’ll have more firsts, but there’s something so innocent about first firsts that make them waaaay more precious than anything else.
7. Drunk Baby
This never fails to make me laugh. The stage where baby‘s muscles are as strong as a strand of hair, where baby’s neck flips and flops about. Where his core muscles haven’t strengthened enough to keep him in an upright position and he keeps tipping over no matter how many pillows I prop around him. Or how wobbly baby gets when he learns to stand and tries out his walking legs for the very first time. My favorite part of all this is shouting, “Timber!” every time he starts leaning too much to one side.
8. Baby Gadgets
It’s always so fun watching baby jump, jump, jump in the jumper, or bounce, bounce, bounce in the bouncer. Baby swings, co-sleepers, activity jumpers, all lifesavers and great mommy helpers, but baby outgrows these things at rapid speed. I wish I could still distract him with these things, but he has his eyes set on life outside the playpen gates.
9. Milk Wasted Baby
Who could resist the freshly fed, comatose, smirking baby? The same baby who moments earlier was crying bloody murder at the top of his lungs. Yes, that same baby whose face turned red with anger and started gagging on his own retching screams. It’s a miracle how all tears and screams instantaneously cease the second baby gets his milk!
10. My Baby
I hate to say it. But it’s true. Once he turns one, he’s technically not a baby anymore. Cameron will officially be a toddler. This hurts me the most. It’s definitely leaving a sweet, bitter sting in my heart. Ouch! I feel like I just had a baby, now I am about to have two toddlers. I’m not ready to let my baby grow, but Cameron is ready to become a big boy just like his big brother. There’s no stopping this guy. He’s determined to explore the world.
So for the next month or so before your first birthday, I promise to love on you even more with head-to-toe rapid fire kisses, numerous visits with the Tickle Monster, and marathon snuggle sessions. No matter your age, in months or years, forever my baby you will always be. I’m thrilled for all the new milestones coming your way. Just as excited as I am to learn all the lessons you will unknowingly teach me. Cheers to you my happy baby. Cheers to another day, another phase. Here we go, BubBub. Together we grow.
August is National Breastfeeding Awareness month. A lot of us have heard the “Breast is Best” campaign and stories of breastfeeding moms who have been kicked out of stores and restaurants for nursing their babies. We’ve also heard how breastfeeding has offended a slew of people who either don’t have children, those who forgot what its like to have young children, and those who believe that breasts should not be used to fulfill a babies insatiable appetite, but rather to only be used to fulfill ones sexual appetite.
Breastfeeding is a personal choice a mother makes for her child. It’s not a decision that is right for every mother, child, or situation. It’s not criteria in which to judge a mother’s value or competency as a parent. Although breastfeeding does not come naturally to everyone, it is NORMAL. Breastfeeding is HARD. It is physically, mentally and emotionally draining. The last thing a breastfeeding mom needs is criticism for her choice on how she feeds her child.
Instead of kicking moms out of stores for breastfeeding, or snickering about a mom’s choice to nurse at the table near yours, just remember, babies get hungry the same way you and I do. The only difference is that babies need to eat more often and they don’t know how to control or comfort their hunger pangs except to cry louder and louder until fed. If it makes you uncomfortable to see a mom breastfeeding, look away and focus your attention elsewhere. It takes only a moment and very little effort to fix your gaze onto something else.
The world needs more breastfeeding allies like the teenage barista who didn’t give into the complaints of a customer’s negative reaction to another customer nursing her child. Instead, the barista apologized and offered a free coffee voucher to the nursing mother for having to experience such ‘unpleasantness’ from the complaining customer. And less people like the manager who removed a covered-up, nursing mom, who just spent hundreds of dollars at the store, from a chair in the back of the store to a back stockroom toilet to continue nursing. Ultimately, all the criticism and negativity directed towards breastfeeding moms directly affect the well being of the innocent baby. No one wants that. Take it from me, when I happen to lock eyes with someone while I’m nursing in public, and that person smiles at me, that small gesture never fails to make my day a little brighter. Let’s start normalizing breastfeeding, instead of shaming it.