Tag Archives: Parenting

One favor speaks a thousand words…

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(New to our journey? Click here to read my Lila’s birth story)

My husband has a friend whose daughter needed extra medical attention during her first few years. He tells a story of a time when their family was overwhelmed with the day to day details of caring for this sweet daughter and household chores got less attention. Suddenly, a few extra dishes in the sink went unseen and the laundry probably piled up a mile high. One warm, summer day, this man heard a familiar noise outside his house. In his overgrown yard, he saw a friend from church. Not a best friend mind you, but a comfortable acquaintance who knew of this family’s situation. He was mowing their grass. He was never asked to help or even told of that week’s particular struggle, but he was familiar with their story and the weight this family carried on their shoulders. So, he brought over his lawn mower and did what he could. Not necessarily a grand gesture, but one that brought tears to this father’s eyes. It was one less worry on his list, taken away by a friend who had no idea what it was like to walk in his shoes. But this simple favor showed he wanted to try.

Our days are often full, the calendar sometimes resembling a crowded reservation list in a newly popular restaurant. Every therapist appointment is worth it, and most doctor’s appointments are greeted with news of good progress. But life with any child is busy, and when you add parents with two full-time jobs AND a special need it can sometimes feel like there is no room for those daily tasks that keep a household running.

This morning we discovered that our new neighbor, who we’ve only met a few times, cut our grass last night. He may or may not know that Lila has Down Syndrome, he’s only met her a few times and for a few minutes. But last night, we pushed Lila in her favorite swing for a few extra minutes before bedtime while he mowed his own lawn next door. We waved to him but didn’t stop to chat. And sometime after that, he decided to take an extra half hour and do us a favor.

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Now maybe to him, it was just too frustrating to see our somewhat overgrown lawn any longer. Maybe he didn’t like how it made his property look. But regardless, this simple gesture made us both smile and be very thankful for one less task on the list of things that need our attention.

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It made me want to pass it on, to do something for a family that might need an extra moment to relax, or even to swing. What one small thing can you do today, to give someone a story they will tell for years to come about a simple act of generosity that left a big impression?

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I Get By With a Little Help From My Friends…

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There is something about the first minutes, hours, even days after receiving a diagnosis for your child that makes you feel immensely alone.  Even with your shell-shocked husband and half a dozen family members standing beside you.  For me, it was this fear that I would never again feel “normal.” That all the play dates and dinners and outings I had envisioned for Lila’s first years somehow wouldn’t happen because she has Down Syndrome.  It sounds silly now, but you never know how you will feel when your world gets turned upside down.  I thought that our little family would be on this journey alone.

(A little background music :))

Boy, was I wrong.

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This was our third night in the hospital.  Karen, Tiff, and Erin came to visit and we walked Lila through the hallways on the rolling bassinet they make you push when you want to take your newborn out of your hospital room.  We talked about all of our kids meeting for the first time, how often they would play together. It was the first glimpse I got into how many people would love our little girl almost as much as we did.  Without any obligation… just because they wanted to.

Right away I learned that little Lila’s “fan base” was growing by the minute.  Best friends came from far away to meet Miss Lila.

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And those who haven’t met her yet, celebrate her victories with just as much excitement as we do.

She had her first “play date.”

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She visited Mommy’s friends at work.

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Some of our best friends started to kick US out of the house, so they could hang out with her (and we could go see a movie :))

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It’s amazing the feeling a Mother gets when she sees someone hold her child, and love her almost like their own.

“Normal” is a complicated word. And though it may mean conforming to a standard, there’s no one definition.  Each family creates their own normal.  I think that, at first, I was so scared our normal would be so different from everyone else’s.  What I’ve learned is that, because of all the people who love my Lila just the way she is, her life will be so much more than the typical we so craved the first time we learned she has Down Syndrome.  How can it not with best friends like all of this?

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What Your Momma Never Told You About Becoming a Momma…

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Somewhere between here…

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And here…

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A lot of shit happens 🙂 I have a few friends about to make this leap, so I thought I’d fill in the blanks, from my limited experience.

(If you happen to be a single guy who has no children, just stop here. I can’t imagine you’d find this amusing.)

*** Everyone is Scared They are Going to Poop on the Table.

When we were in our birthing class, a shy guy raised his last in the last few minutes of class, red-faced, and finally asked the question on everyone’s mind. The delivery nurse who was teaching the class smiled and said, “I”m glad you asked.” She said it happens a lot, but 85% of the time no one besides the nurse and doctor even realize what’s going on.  Apparently, they just clean it up without saying anything and no one “up north” is the wiser. I never had to go through this experience since Miss Lila seemed to want test the waters of this world with her toes (she refused to move out of the feet down position) and we had a C-section.  But that doesn’t mean I didn’t have my own “memorable” experience with that bodily function. Let me just say that going to the bathroom for the first time after having a baby was almost as bad as HAVING the baby itself. Just sayin’. The good news? It doesn’t last near as long as childbirth.  The bad news?  Your family is still probably gathered in your hospital room just a few feet away. 🙂

*** Everything Doesn’t Always Come Up Roses.

We fully expected to have the birthing experience right out of a magazine. If you’ve followed our story at all, you know we had quite the shock when we found out Lila had Down Syndrome just a few hours after her birth, while a photographer from my TV station waited right outside the door to capture the new family of 3 for the evening news. (Catch up here.) What we went through, obviously, is not the norm. Lots of babies spend some time in the NICU, or don’t take to breastfeeding right away, or end up that cute shade of yellow that means they need to spend some time in the baby “tanning bed.”  My point is, just because there’s a hitch in the road you didn’t expect doesn’t mean the way your little one comes into this world is any less special.  You’ll still look back and be so grateful, whatever the circumstances. Trust me, I know.

***Get Ready to be Judged. A Lot.

Every Mom (and Dad and non-parent) has an opinion about how to birth/raise a child that is NOT their own. My doctor told me our best plan of action was to have a scheduled C-section. I STILL had people raise their eyebrows at me and say “Uuuummmm, are you SURE that’s what you want to do?” And that’s just the beginning. To schedule or not to schedule, to swaddle or not to swaddle, to rock to sleep or not, all seem to bring that same raised eyebrow look from someone. I think Lila’s good friend Ally says it best…

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And then one day, it happens. You catch yourself looking at some other Mom while YOUR eyebrows start to inch toward the sky. You can’t BELIEVE they don’t schedule/swaddle/rock, or fill in your own blank. For some reason, it’s just become part of our culture to make Mother’s feel badly about their choices, and to be honest, there’s enough Mommy guilt inside of each of us to last a lifetime. We don’t need any help in that department.

***Baby Boys Don’t Own the Rights to Peeing on Mommy (and Daddy)

It was, perhaps, what I felt was the best-kept secret of raising a little girl.  Here I was, a new Mom of barely a week, getting ready for one of those middle-of-the-night feedings, when my daughter peed ON THE WALL!  In a rookie-Mom move I took the dirty diaper all the way off, folded it and threw it away before putting the new one on.  And my little “angel” brought her knees to her chest, swayed side to side, and peed straight up in the air and all over the pink taffy colored walls of her “perfect” nursery, even spraying the mirror above her changing table. This experience was quickly overshadowed a few weeks later when the same thing happened again, but pee was not the ingredient of choice this time. (What can I say? There’s a lot of dealing with poop in motherhood.) Her method was the same, but the result was that yellow-colored newborn poop all over her little WHITE Christmas tree beside her changing table (picture taken before the offending incident.)

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I woke Daddy up for that one, because I just couldn’t go through that moment alone!

***Surround Yourself With People That Build You Up, Not Stress You Out

Whether it’s your pediatrician, your Mom, his Mom, or one or two of your Mommy friends, some people just will NOT get what you are doing. It’s not the end of the world if you have to feed your baby formula, or with a bottle, or at 2 hours instead of 3.  Some people will scowl at those dirty dishes in your sink or the pile of laundry that needs to be folded.  Do whatever it takes to limit your time with the people that make you feel bad about yourself, it’s just not worth it.  (And if it’s your pediatrician, for goodness sakes find a new one.  Their job is NOT to make you feel like you deserve the worst mother of the year award.)

*** Get Used to Eating Your Own Words

I looked forward to being a Mom decades before I actually became one. And I just assumed I had it all together. I had a lot of thoughts that began with “I will never…” The truth is, someday you probably will. Whatever it is. Change your child’s diaper in the middle of Target. Did it. Breastfeed in a public place. Did it. Have your newborn out in public past 9 pm. Did it. Go to the bathroom AND wash your hands, all while holding a sleeping baby (I know, I know.) Unfortunately, did it. Clean off the baby’s passy in your own mouth.  Haven’t done it yet but probably would if the situation was desperate enough.  And the list goes on and on.  The truth about motherhood is we’re all just trying to make it through the day without seeing this face…

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while maintaining the same amount of hairs we started with. Sometimes desperate times call for desperate measures.  No matter how much we thought we would keep our cool before we made it here.

***Comparing Can Only Lead to Problems.

Lila is 5 and a half months old and, if positioned in the right way, can sit by herself for a few seconds.  See?

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Some babies do this earlier, some much later.  Lila sees an Early Intervention Teacher once a week, a physical therapist once every three weeks, and a feeding therapist/occupational therapist once a month.  They are amazed at her progress. But in the days of Facebook, it’s easy to get a little discouraged even when you’re beaming with pride. I try to remind myself that, Down Syndrome or not, someone will always be a little bit ahead of you. But the same holds true when you look behind you. Ten years from now, it won’t matter when our babies first crawled or sat up or said their first word. Shoot, we probably won’t even remember. So, I’ve decided to try to celebrate instead of comparing. But sometimes I still forget.

We’re all just trying to keep our heads above water. It’s a hard job, no matter what country we live in, or what parenting philosophy we subscribe to. At the end of the day, we all figure out what’s best for our little families. And, who are we kidding? A few years from now we will look back at ourselves and laugh.  A lot.

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When you say nothing at all…

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New to our journey?  Start here…

It’s easy to know what to say when you are presented with life’s best moments.  When things are good and easy and predictable.  When someone gets a new job, or gets engaged or married or has a baby, finding the words to say isn’t hard.  Sometimes all you need is a hug or a smile, and your friend can feel what’s in your heart.

But when life doesn’t turn out exactly like you thought, it can be more difficult.  For everyone.

When we found out Lila had Down Syndrome four and a half months ago, just three hours after she was born, it was hard to know what to think, let alone say.  I will always remember the first words I said to my husband… “She is ours. We will love her.” I didn’t think those words before they came out of my mouth.  I just felt them. But almost immediately, it became very obvious that lots of other people had NO IDEA how to react to the news.  And who could blame them?  In life’s most difficult moments, most of us can’t find the right words.

But in the months since, I have heard some of the best words of encouragement that, I hope, will help me when I am faced with a friend who is going through an unexpected journey in life.

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Some of the best….

On one of her many visits to the hospital, one of my very best friends cried with me, held me tight and said, “Lila was sent here, to you, to teach us all.”  It was one of the first times I didn’t feel like we were alone in this unexpected news. We might be dealing with the shock in the most intimate way, but so many others who already loved Lila, were dealing with it in their own way, too.  And beside them, I felt better.

That same, sweet friend told me “Whatever you think and feel, it’s ok.  It won’t always be pretty, but you can’t blame yourself for those thoughts.”  When you’re trying to wrap your head around something like having a child with special needs and the twist and turns it means for the path you had in your mind, you can think some pretty unexpected things.  And feeling guilty down the road for those thoughts, only makes it worse.  You can’t help how your mind reacts to something like that, and you should NEVER beat yourself up about it.

I am blessed to have a family member who struggled right along side me when Charlie and I were dealing with infertility for almost two years.  She called from out of state when Lila was born and said, “I don’t want to say I’m sorry, because I ‘m not.  I know your not disappointed IN her, but FOR her.”  I felt, for perhaps the first time, that someone captured what was in my aching heart.  I didn’t yet know how strong and awesome and awe-inspiring that 6 pound 4 ounce baby would come to be, and in fact already was.  For that moment, still hooked up to IV’s and barley getting the feeling back in my legs, I knew this wasn’t what I had pictured the day before when I quadruple-checked my hospital bag.  And she was very right.  We are NOT sorry.

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An awesome co-worker who has a brother with special needs said to me, “His life is no less important than anyone else’s.”  I thought, “Yes! This is how I feel about my Lila!”  And it has only rung more true as I get to know this strong little girl that I get to hang out with every day.

In the months since, so many friends have reached out to us to tell us how inspired they are by our story and by our Lila.  Never hesitate to offer that encouragementton the families you know with special needs kids.  It often comes on those days when I am overwhelmed and close to feeling like a failure of a Mom.  You never know how a few simple words can lift someone else up, by a thousand miles.

It may be easiest to ask, “How are you doing?” but when you are juggling countless therapy appointments, hours of research on the internet of new feeding or PT techniques, or just the mounds of laundry and bottles that come with being a new mom, it’s easy to brush that question off with a quick, “Fine.”  I find the most comfort in those specific questions.  Like, “What is Lila working on in therapy this week?” or “How has she surprised you most lately?”  Not only does that make me feel like that person really wants to know how we are doing, but it feels good to be able to share without fearing that I am overburdening someone else with therapy talk.

Now for some of the worst…

Don’t tell me my daughter breaks your heart.  Even if you have the best of intentions, which I understand most people do. That’s certainly how I might have felt when I first heard the words Down Syndrome in the hospital room that was supposed to be where I spent the best day of my life.  But now that I am 178% in love with my daughter, extra chromosome and all, hearing that doesn’t feel good.  I know you mean well, but it takes me back to that moment.  And it makes me think that it’s all you see when you look at her.  And I now know with every ounce of my being that she is SO MUCH MORE than that.

Don’t say “She doesn’t look Downsy at all!”  I know what you mean.  You are trying to say she is beautiful. And, trust me, I agree. Who wouldn’t love THIS face?

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But that IS NOT the way to get your point across.  She is gorgeous because of who she is, not because of how much or little she resembles other kids with a similar diagnosis.

And finally, don’t say nothing at all.  There are a few people in our lives, and only a very few, that have withdrawn from us since Lila’s birth.  Maybe they are uncomfortable or don’t know WHAT to say.  But distancing yourself from this miracle that we love so much is not that way to go about it.  Sometimes it can get hard, but hey, life is messy.  My sweet Daddy has told me countless times over the years that life isn’t fair.  And he’s right.  But it’s also sometimes the sweetest in the moments just after we come to that realization.  Don’t desert those friends or family members who find themselves in this life.  One day, they will need you more than you will ever know.

I think my point is, it’s hard to bring up life’s difficult topics.  It’s hard to say your true feelings.  Often, it’s easier to talk about the weather and pretend like nothing is wrong or different or difficult.  But I truly believe if you stay silent, you are letting an opportunity go by to ease someone else’s fears or take a little weight off their shoulders.  Because the most important thing you can say to someone who has just learned that their child has any diagnosis, is that you will be there right beside them, whatever the need.  It takes a village to raise any child.  Our children just need a village full of people with even bigger hearts.  People like the ones that help lift us up when we need it the most. And for their words, I am so thankful.
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Have no envy, no fear…

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New to our journey?  Start Here

When were so desperately trying to get pregnant, the only place I could cry was the shower.  Charlie had already left for work, the house was quiet except for the music I always blasted.  Over and over again, I would listen to a song by Joshua Radin called, “No Envy, No Fear,” while I sat in the floor of the shower and cried like a little girl.

(A little background music, for your reading experience)

The same way I once cried when I fell off my bike and skinned my knee.  Or the first time I remember spending the night away from my Mom.  But now, instead of physical pain or loneliness, I was crying because of the unfairness of life.  I wanted a baby so badly, and all around me it seemed like all anyone else had to do was blink their eyes and tap their shoes together three times, and there was a plus sign on a pregnancy test.  But for me, months and months had gone by and no plus sign, no baby.  I cried because it was the one thing I couldn’t control, no matter how hard I tried.  And I cried because of how guilty it made me feel.  I was full of jealousy in every ounce of my being.  I ENVIED everyone else who had one.  I FEARED the chance that I may never find mine.  I didn’t want to do either, but it was all I could do.

And then one day, a plus sign came.  All the ENVY and FEAR disappeared.  I lived nine months without it.  The absence of them both made me the person I used to be, the real me.  It was the best nine months.  The nursery I had planned in my head for two years was finally a reality.  The name I had whispered to myself for so long was on a wall in pink and black and white.  She was coming.  She had found me.

And soon after I met her, where did I go?  The floor of the shower again with the word Down Syndrome running through my head.  With the music blasting so no one would hear.  Crying so hard I could barely breathe, questioning where my picture of perfection had gone.  Scared to think what the rest of my life would be like without the image I had in my head.  I picked it up again, all that ENVY and FEAR.

In the last four months, I have shed most of it.  Little by little, day by day, I dropped it off and left it behind.  I was getting lighter, not only losing the pounds of pregnancy (thank God for breastfeeding) but the weight of the negativity that had come back to me, dragging me down.  The thoughts that would try to hide what a blessing I had.

But, days like today remind me they are still lurking in the shadows.  My two old friends, ENVY and FEAR.  They can rear their ugly heads at the strangest times.  During the moments that can make me feel the guiltiest.  During someone else’s excitement or shining moment.  Today it was a friend’s pregnancy announcement.  When I should be happy for them, instead I am envious.  Jealous of the easy and smooth road that, in my mind, lies ahead of them and the contrast to my new life.

Maybe it’s because it reminds me of those blissful 9 months.  And the day I thought would be one of the happiest of life, that turned out to be the most conflicted.  The confusion that stole those precious hours from me and fooled me into thinking it was all gone.  The sadness I feel for not taking advantage of every one of my first moments with my little girl.  The weakness that made me question her, and myself and God.

I know that the last thing I should do now is compare.  Because that is truly what brings back these two ugly step-sisters.  Comparing my experience to theirs, my situation to theirs, my baby to theirs.  I don’t want to envy them, and I don’t want to fear the reality of my life.  Sometimes, but not most of the time, I still do.  It’s hard to admit and I wish I didn’t, but I do.

And it makes me feel guilty as a mother who loves her little girl so much.  But, what I have come to realize is that maybe this is all about a flaw in me, and not one in her.  Because every single mother has to overcome their own obstacle.  And whatever the size, to them, it feels like a mountain they can’t pass.

I have a friend that, from the outside, seems to have the perfect life.  Two healthy and typically developing children.  A job she took a leap to find.  A beautiful home and loving husband.  And not too long ago, she posted on Facebook that every night for the past two years, her daughter screamed and cried and threw a tantrum. EVERY SINGLE NIGHT.  I can’t imagine how she must have felt.  Pulling your hair out doesn’t begin to cover it.  A glimpse into her world was a gift to me that day. A reminder that she has her battle (in fact everyone does), and this is mine.

The road that WE must travel is full of physical therapists and delayed timelines and doctor’s appointments.  The ENVY I have now is for babies who hold their head up one day simply because they want to.  They don’t have to work for hours to build up the strength.  The FEAR that lives inside me is for the first time someone will call my child a name.

But then again, Lila started sleeping through the night at seven weeks old.  She loves to eat and to smile

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ImageShe loves her brother Tigger already.  And slowly, I am letting go of MY envy and fear.  Because if I don’t, one day it will become her’s.  And that will NOT be what my daughter gets from me.

Today was a hard day, but not every one is.  Some are much better.  In fact, most are very close to perfection.

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“Have No Envy, No Fear”

Some are reaching few are there, wandering from a heros chair, some are scared to fly so high, well this is how we have to try

Have no envy and no fear, have no envy, no fear

Brother brother we all see, your hiding out so painfully, see yourself come out to play, a lovers rain will wash away

You envy and you fear, so have no envy, no fear

When your sister turns to leave, only when she’s most in need, take away the cause of pain, by showing her were all the same.

Have no envy and no fear, have no envy and no fear

And every day we try to find, we search our hearts and our minds, the place we used to call our home, can’t be found when were alone

So have no envy, no fear, have no envy and no fear