Eleven Years Ago Today: Then and Now

Then

On July 22, 2013, much of the world seemed to celebrate the birth of the new prince in Great Britain. Hooray for the Duke and Duchess of Cambridge! I mean that, even though I'm American and don't quite grasp the concept of a royal family. Congratulations are in order, nonetheless.

Yesterday, I was remembering eleven years prior - July 22, 2002 - when I went for a routine doctor appointment while pregnant with my second child. There were no rose-colored lenses while walking down Memory Lane this day.

He wasn't due until August 1^st, but I was tired. I wanted him to be born yesterday, if you know what I mean. The doctor said, "The baby isn't doing well and neither are you. I need to induce you today." That jolted me out of my lethargy. I started making excuses like, "I need to go home and get my husband. I need to arrange child-care for my oldest son. I don't have any extra clothes." The doctor was kind but firm, "I'm sorry, but I can't in good conscience let you go. It's time to go to the hospital." We only had one car at the time, so my husband had to make arrangements with my sister to come babysit and with a neighbor to bring him to the hospital.

I went to the hospital shortly after 1:30pm. Since my first pregnancy had been induced I already knew what to expect. Despite this experience, I was in for a rough night ahead. My blood pressure spiked dangerously high and I was given some medication to bring it down. About 6:00am the following morning I was given an epidural. Finally, I could get some rest. Or not. By 6:25am he was ready, except that because of the epidural, I was not. Because of this the doctor had to initiate a vacuum-assisted delivery. If I had only known.

The first thing I noticed after he was born was that he didn't cry. I don't even remember if I got to hold him because I passed out. When I came to about 11:30am, I went upstairs to the ICU to visit him. I wanted to hold him or at least stroke his arms and face. At this point, I thought it was just a precaution that he was in the ICU. Before I realized what was happening, the seizures started. My baby was enduring seizures and all I could do was watch. He was having trouble breathing and there was nothing I could do. Little did I know he was experiencing a brain hemorrhage.

That evening, he was transferred to Seattle Children's Hospital where he stayed for nearly two weeks in the NICU. At the end of his stay, we were told that there was nothing more that could be done for him and that we should take him home to enjoy what time was left. In all likelihood, he would soon die. By the grace of God, that did not come to pass as we are celebrating his 11^th birthday today!

My heart was happy and subsequently broken on July 23, 2002. Words like "Grade IV intraventricular hemorrhage", "seizures", "cerebral palsy", "developmental delay" and "cortical visual impairment" were not yet part of my everyday vocabulary, but they soon would be. Every year I remember this and thankfully the grief becomes less and less as I see the progress that he makes. But I digress. His party is this weekend, but we're still going to celebrate today. We're going swimming after lunch. We sit in the shallow end of the pool while he splashes. We're going to McDonald's for dinner because that's his favorite. After dinner, we're going to Whole Foods for dessert because they have the bomb brownies that he loves. Later this week I have cupcakes to make, more presents to buy, and a party to plan for this weekend to celebrate the birth of my little prince who has come a long, long way.

Happy birthday to my sweet little prince!

Now

The Lord is close to the brokenhearted and saves those who are crushed in spirit. Psalm 34:18

MNO

Once a month I am blessed to be able to go out for an evening and visit with some wonderful women who just also happen to be moms with special needs children - this is Mom's Night Out. There are the regulars (of which I am one) who try to make it every month. Then there are others who make it less frequently.

Sometimes the evening is filled with so much laughter that I have tears in my eyes. Other times, the mood might be a little heavy. Sometimes one or two or three or more of us are going through a rough patch either at home or at school. No matter what the situation is we all know that we can share our struggles without fear of being judged or misunderstood. These moms "get it". They've been there. They've done that. There is nothing you could say that would shock us. They know that normal is just a setting on the dryer so to speak.

At the risk of sounding like a 1960's folk song, I will say that everyone needs to feel as though someone understands them. Loneliness, confusion, and frustration stem from thinking that you are the only one experiencing this - whether it's an autistic child with behaviors or a child with global delays who struggles to hit the developmental milestones. That's not to say that we don't have friends with typical children. We do. But honestly, sometimes it's hard to relate particularly when things are rough at home. Speaking from experience, I was ecstatic to find others like me. This didn't change my situation; however, it did give me a powerful sense of knowing that I am not alone. That my friends, is priceless. So to all of my MNO buddies: I hope you know just how much you all mean to me.

"Perfume and incense bring joy to the heart, and the pleasantness of a friend springs from their heartfelt advice."  Proverbs 27:9

You Sound Like Your Mother

We've all done it.  We've all said something to our kids then smacked ourselves on the forehead and cried, “Doh! I sound like my mother!” We vowed that we would never say that to our kids.  We were determined not to turn into our mother. We promised ourselves that we would be different. It sounds good, in theory, but in practice...

Kids say the darnedest things.  They also do the darnedest things.  So, once we have children, we find ourselves saying things that we never would have dreamed of saying B.C. (before children).  For example, these are just a few of the things that I've said around our house:

• (sniff, sniff) For the love of God, stop giving the dog cheese!
• Soap and shampoo are not optional.
• No, you do not get clean by just letting the water run over your body.
• Sometimes you need to wipe more than once.
• Quit picking your nose.
• The cat is a live animal not a toy.
• If you don't want it for dinner, you can eat it for breakfast.
• Why do you have a pencil in each nostril?
• Well, shove a wad of toilet paper up your nose to stop the bleeding.
• No, no, no. Rocks are not food.
• Sure, you can play...right after you do your homework.
• No, sweetie, that's the cat's food; we don't eat that.
• Yeah, I guess it is lucky that the bird crap matches daddy's car.
• When was the last time you went potty?

To be honest, I don't remember my mom saying any of these to me...except maybe the one about eating my dinner for breakfast.  Maybe I am original.  Maybe I did keep my promise after all.  Oh, wait a minute; just the fact that I even had to say any of this stuff doesn't exactly attest to my stellar parenting skills. Doh!

Case Manager, Therapist, Nurse, Advocate.........Mom

I remember the days of early intervention.  Several times per week, various therapists would come to the house to work with my youngest son: the physical therapist, the occupational therapist, the speech pathologist, the teacher for the visually impaired, and the child development specialist.  I hated every minute of it.  No, I take that back; “hate” is such a strong word.  I resented every minute of it.  Well, not every minute.  Just mostly every minute.  I do not want to sound ungrateful.  Lord knows, I am very grateful for all of the time and expertise put forth by all of the therapists.  Truly, I am; and with Thanksgiving only three days away, I need to remind myself of all I have to be thankful for.  But, all during that time I kept wondering, “When do I get to be just a mom?”  Oh, that would be never.

I'm guessing that when most women have children they do not envision having a team of professionals who will teach them how to interact with and care for their child.  Seriously, I might have fantasized about having a nanny or a housekeeper, but never an entire team of therapists.  (An entire team of therapists who came to the house every week, which for some reason created a lot of self-inflicted pressure to keep the house clean, or at least, presentable.)  Nor do I think that most women envision seemingly endless medical tests and appointments with specialists.  Most soon-to-be moms envision the 2:00 am feedings, diapers, naps, cuddle time, play time, and trips to the park with their baby.  The usual mom stuff...that's what I envisioned.

A mom with a special needs child is never just a mom.  She is a case manager who is responsible for coordinating therapy appointments, medical tests, and doctors appointments.  She is a therapist who is responsible for implementing the exercises and techniques that the therapists recommend, and ensuring that therapy time and playtime are synonymous.  She is a nurse who is tasked with dispensing the daily medication or cleaning the G-tube or monitoring some other medical device.  She is an advocate who researches and lobbies for the programs/medical procedures/therapies that will benefit her child, all the while feeling a twinge of guilt wondering if there was something she missed or wondering if she didn't fight hard enough.  Finally, finally, in between all of this are those precious few moments when she can be just a mom, sort of.  Those moments when her autistic child briefly makes eye contact with her while lining up trains; when her blind, nonverbal child hugs her before bed; when her deaf child signs “mom”; when her Downs Syndrome child smiles at her as they look at a book.  Those are the moments when we are just moms.

Eleven Years and Still Mommy

Today, my 10 year old is 11 years old.  And today, I'm still Mommy.  I'm just waiting for the transition to Mom.  It's almost like a rite of passage for kids to go from saying “mommy and daddy” to “mom and dad”.  I think I was around 10 or 11 when I dropped “mommy” in favor of “mom”. I've actually been dropping subtle hints to him like, “Mom and Dad are going out tonight”.  The gift tag for his birthday present read, “Love, Mom & Dad”.  I don't know why I'm so ready for him to call me Mom.  I know that it's just a matter of time and that one day soon, he'll wake up and call me Mom. Don't get me wrong, I'm not complaining...at least he's still talking to me.


Happy Birthday to my big kid!  Seven more years until you're 18, buddy.  Enjoy it while it lasts.


Oh yeah, one more thing: GOOOOOO GIANTS!!!!!!!!!!!!!  Two down, two to go, baby!

Moms: Most are Awesome, Some are Special

Mother's Day is this Sunday.  Already?  I'm looking forward to a BBQ and spending a semi-relaxing day with my family.  I love watching my boys grow up, especially my youngest.  He has made such progress.  He started out life by surviving a near-fatal brain hemorrhage shortly after birth.  He has had to grow and learn despite being legally blind, unable to talk, having mild cerebral palsy, and up until five years ago, seizures.  “Special” has taken on a whole new meaning.

I'm willing to bet my next bowl of ice cream that at some point most moms of special needs kids have read one or both of these essays: “Special Mothers” by Erma Bombeck and “Welcome to Holland” by Emily Perl Kingsley.  They are uplifting and they shine a comforting light into a seemingly dark tunnel.  But after reading them for the first time, I was torn between wanting to say “Thank you” and “Screw you”.  At the time, I felt that while they contained much truth and encouragement, I also felt that they were a tad patronizing and a little too sugar-coated.  This was how I felt.  In no way am I assuming or implying that every mom felt this way.

As the years have passed I have gained experience and a changed perspective.  Consider this: I'm willing to bet another bowl of ice cream that many women have said something like this during their pregnancy, “I don't care if it's a boy or a girl.........as long as it's healthy.”  I know I did.  It's only natural; I mean why would you want for a baby to have a long-term illness or a disability?  Most normal-thinking people would not wish that on another person.  Still, this statement can sound insensitive.  How could I love him any less because he's not “healthy”?  Because, I mean, come on.  Seriously?!?  I love my special kiddo not in spite of or because of his disabilities; I love him because he's my son.  Have I ever wished that he was a typical kid?  You betcha.  Am I glad that he's in my life just the way he is?  Double you betcha.  Not one shred of his progress or milestone achieved has been taken for granted.

I know some wonderful, fantastic, dedicated moms of special needs children.  And there are plenty who I don't know.  Ladies, here is a shout out to you: You are awesome!  Even when you are feeling your worst but especially when you're at your best, which is more often than you might think.  Happy Mother's Day!

 

Update 10/22/2010: If you haven't yet seen the blog Uncommon Sense, I encourage you to visit and read the entry entitled "Amsterdam International".  To me, it wonderfully describes the arrival to Holland.