An article that a new friend shared

I can only hope to live up to this ...


Who Mothers the Children with Disabilities?
By Erma Bombeck

This year, nearly 100,000 women will become mothers of children with disabilities. Did you ever wonder how mothers of children with disabilities are chosen?

Somehow I visualize God hovering over the earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs his angels to make notes in a giant ledger.

Finally, He passes a name to an angel and smiles, "Give her a child with a disability."

The angel is curious. "Why, this one, God? She's so happy."

"Exactly," smiles God. "Could I give a child with a disability to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes ... here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says "Mommy" for the first time, she will be present at the miracle and know it!"

"When she describes a tree to her blind child, she will see it as few people ever see my creation."

"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of her life because she is doing my work as surely as she is here by my side."

Just a quick family photo ...

Back to Work

So, I officially survived my first week back at work! Whew! Well, I guess I can't qualify it as my first week back, as I only technically worked two days (but twelve hour shifts, nonetheless)! I had a meeting for four hours that I had to attend on Tuesday, and then I worked 7am to 7pm on Wednesday and again on Friday. To help ease my transition back to work the first week, my mom ("Ci Ci" to those of you who are lucky enough to call her your grandmother) offered to take care of Jack for us for a couple weeks on days that I work. Let me tell you ... there is NO way I would've made it through this past week without her! As if going back to work (and actually having to use my brain power for the first time in three months) wasn't going to be hard enough, I couldn't have imagined having to do so knowing that Jack was in the care of strangers in daycare. Honestly, if he had gone to daycare, I would have been doing my patients a disservice because I would have been thinking about Jack all day (not that I didn't anyways)!

I managed to get through my shift by talking about Jack, answering questions about Jack, showing colleagues pictures of Jack ... and, oh yeah, I took care of a couple people too! (Geez, I hope none of my patients ever read this!) It was nice to know that, despite my fears of having "mommy brain," being a nurse was like riding a bike. And, as nice as it was to find that I've still "got it," I definitely enjoy being a mom more than being a nurse!

For my patients' sake, I hope that it will become easier to concentrate at work and focus on their needs, rather than staring at my baby's photo and calling my mom to check on him every other hour. That being said, going back to work has certainly made those three weekdays I get to spend with Jack all that more precious. And, although I dread leaving Jack and groan when my alarm clock goes off at 5:45am on mornings I work, I know that it is a good thing for my sanity to talk with adults occasionally (and hey, at least I have a job in this economy!)

So, here's to Ci Ci for saving me from heartbreak this last week. Here's to my still having enough brain cells to be a nurse (but I don't think you'd want me as your nurse until I'm a little more "focused"). Here's to the wonderful staff at Moses Cone Hospital's Children's Corner ... if they ever even get to see Jack again. ;) But above all, here's to my adorable, smiling, happy, most precious baby boy who I am so proud to call my son!

The Benefits of Bottlefeeding ...

Need I say more?

It's been a while ...

So, many of you are probably wondering if I'd forgotten about keeping you all updated and stopped blogging. To be honest, Jack has just been so much fun lately that I have trouble finding time to sit down and post, as I am spending all my time playing with him. Seriously, you should see my house ... it's never been quite this bad off!

I used to think of myself as a pretty clean person ... messy, but clean (yes, there is a difference). However, during our last beach trip, Jack really started smiling almost on command and cooing a lot more, which just really made our bond so much stronger ... and my housekeeping skills much weaker. I like to think of my poor housekeeping skills as a testament to my being a great mother (at least that's what I tell myself and tell Robert everyday when he gets home from work to a dirty house!). Jack is just so engaging around people ... no one can get enough of him! It's amazing how you can look into your baby's eyes, sing to him, and play peek-a-boo, only to turn around to realize that THREE hours have gone by! And, by this time, it's time for another bottle! So, as you can imagine, rather than blogging (or cleaning my house), this is how I have been spending my days.

I think another reason I've been so much more attached to Jack is because I head back to work next week, and Jack will be entering day care at the hospital where Robert and I both work. :( Now, I realize that many mothers go through this separation anxiety and that I'm only working part time two days a week (2 twelve hour shifts as a nurse), but it has been a tough week for mommy! We visited the day care center today and spent a lot of time with the teachers, showing them tips on feeding and playing with Jack because of his special needs. They all LOVED Jack, and I definitely feel way more comfortable with the whole idea. I think my biggest fear is that they won't stimulate him enough during the day like I am able to because there are other infants to care for in the room. However, after observing today and instructing them on how important play time is for Jack in terms of developing his skills, I feel much better. And, after all, I guess I should feel thankful that Jack is high functioning enough and has no health problems in order to be able to be cared for in this type of setting. I have to remind myself that there are many children out there with such challenging disabilities that they need special one on one nursing care, but not my Jack. Whew! My heart and prayers truly go out to all parents of children who need that extra support!

So, an update on Jack ... he's doing great! He will be 11 weeks old tomorrow, and he now weighs over 11 pounds. Jack is a great eater, although not the speediest eater. But with tips from the Occupational Therapist, his sucking and swallowing motor skills have gotten much stronger. He continues to get stronger everyday and lifts his head up moving it from side to side during "tummy time" like any typical three month old. We have had some concerns about his restlessness while sleeping, which is probably related to his difficulty breathing while lying on his back. This is most likely due to his small nasal airways and his lower muscle tone (typical in Down Syndrome) which can allow his tongue and soft palate to flop into the back of his throat while sleeping. We were actually a little concerned about possible infantile spasms (a type of seizure) for a bit because of his spastic movements while falling asleep (and mom's neurotic research on the internet!). It was enough for us to obtain an EEG, but we are ecstatic to announce that it showed no seizure activity at all! (It sure helps to have the only Pediatric Neurologist in town as your grandfather! Thanks, Pops!) Nevertheless, we're pretty sure that Jack will need a sleep study sometime in his future to evaluate his breathing and restlessness, but he will unlikely have this done until he's about 6 months old.

Thank you again to all of you for reading and staying updated. Keep us in your thoughts, although know that Jack is doing wonderfully. For those of you who have sent flowers, gifts, meals and who have visited, we hope that you have received our thank you letter in the mail and enjoyed the photo of Jack. We could never possibly thank you all enough for your support!

A Pivotal Moment ...

I'd like to share with you all a very personal moment that Jack and I shared during the early morning hours today ...

At about 3:00 am, Jack awoke for his typical nighttime feeding. He quickly drank a bottle while we watched some HGTV (those of you who know me well are not surprised to hear this). After his bottle and a diaper change, Jack didn't seem quite ready to back to sleep. So, like we often do, we rocked in his nursery rocking chair while I tried to breastfeed him back to sleep. He latched on like an old pro, and as he suckled, the warmth of our bodies merging together, we just looked deeply at one another.

And for that moment, for the first time, I saw his crooked little fingers as just a "Jack" thing.
I saw his tiny ears that slightly overturn as the cutest ears on earth.
I saw his almond shaped eyes as simply the most beautiful big blue eyes I've ever seen.
And, in his eyes, I did not see his Brushfield spots.
Instead, I saw sparkling stars amidst seas of blue.
Rather than the slightly flattened bridge to his nose, I just saw the same nose that I see when I look at my own baby pictures.
I saw that the little gap between his great toe and second toe looked just like mine after years of wearing flip flops every summer.
And, finally ... I saw his smile. A true and honest smile. Not one caused by gas or triggered during a dream, but a real smile. The kind that lit up his entire face. He was lying there, held snuggly against my bare breast, just smiling at me with his huge beautiful grin.

And in that very moment ... I forgot about my worries and fears for our future.
I forgot about the fact that he may not sit at 6 months or walk at 12.
I forgot that he may take a little longer to learn to feed himself or to tie his shoes.
I forgot that he might not go to a regular school or ever be a sports star.
I forgot that people may make fun of him one day, and I forgot about how this might make him feel.
I forgot that he might not go to college or kiss a girl.
I forgot that he won't become doctor, a lawyer, or a veterinarian.
I forgot that he won't ever experience the joy of becoming a father.

In that very moment ... I forgot about his Down Syndrome.

Hit the Road Jack

So, among our many, many blessings, Jack has the privilege of BOTH of his sets of grandparents owning beach property, and we are currently vacationing in the beautiful Outer Banks, NC at the Hicklings' place. We've been looking forward to this trip for many months, and it could not have come at a better time ... time for some much needed R and R!

We arrived in the Outer Banks on Saturday morning, after we had our first Friday "night out on the town" since Jack was born. Two of our dear friends, Amy and Jay Lawrence, celebrated their marriage with a reception at our favorite local watering hole in Greensboro on Friday (7/2), while Grandma and Pops Hickling babysat for the first time. We had so much visiting with friends, but Mommy definitely missed Jack ... and her pre-pregnancy tolerance for alcohol! ;)

So, Saturday morning, Mary, Bill (Robert's parents), Robert, Jack, the dogs and I headed to the Outer Banks. Jack was a wonderful traveler and Mary and I didn't have to stop at all. Thank goodness Jack took to the bottle while riding in his carseat!

The beach weather was perfect the first two days we were here (in the mid 80's) and Jack quickly resorted back to the original beach bum he proved to be when he was merely 2 weeks old. He relaxed with the best of 'em, they with their beers, he with his bottle! He's such a easy baby ... or, as Pops would say, "He's so portable!"

We celebrated the 4th of July in full American fashion with an enormous spread of burgers, brats, dogs, crab legs, shrimp, clams, and multiple salads and dips. Robert's brother Chris and his wife Alice were here, as well as his cousin Nancy and her boyfriend Jake with several of their friends, who were so much fun! So, despite being new parents, Robert and I still tried to "hang" with the best of their party crowd! And, it was also relieving to realize that I hadn't lost my touch for "throwing some bags" (for those of you scratching your heads, I'm referring to a game called Baggo that we play ... kinda like horseshoes with bean bags).

Sadly, Robert had to head back to Greensboro for work on Monday evening, but soon after, our friends Greg and Hiba and their 1 year old little girl Mirah joined me at the beach. It was loads of fun to catch up with them, as the last time we saw them was when we visited them in Seattle when their little one was only 6 weeks old! It was a blast seeing Mirah on the beach for the first time! She took to it like a veteran ... trying to eat sand and splashing in the waves before crashing for afternoon naps on the beach. It's so funny how our lives have all changed since we've had children ... MUCH different than the life we knew together in Chapel Hill just two years ago!

Robert returned to the beach on Thursday night (thank goodness ... Mama was getting tired!). I don't think I've ever missed him so much in my life! I have a brand new respect for single moms after flying solo with baby Jack for 3 nights!

Friday evening, we were joined by two more friends, Corey and Amy Ford, who were married just the day after Jack was born (so clearly we couldn't attend). We just relaxed, ate good food, and played games (they killed us at Trivial Pursuit!). It was wonderful to see them, if only for a short trip ... thanks so much for coming guys!

It was a wonderful week at the beach with family and friends, and it was nice to find out that Jack hasn't forgotten how to be a beach bum! He is 6 weeks old now, and is eating well and seems to be growing like a weed! (He's already outgrown my favorite PJ's!) Jack holds his head up for as long as 20 seconds now when we do "tummy time," and he is much more awake and alert during the days now. I hope you all enjoy our photos, and thanks to everyone for their continued thoughts and prayers.