Tuesday, August 24, 2010

Designer "Genes"

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 ...

Saturday, August 21, 2010

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!

Thursday, August 12, 2010

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!