Wednesday, May 4, 2011

With Gratitude.

Jan 6, 2010
May 2, 2010
April 25, 2011

Mother's Day, May 2011

Tomorrow, May 5, will mark a year since Jeff and I brought Patrick home from the hospital, after 120 days. It seemed surreal that we had arrived there early one cold, cloudy January morning, and left on a warm Spring afternoon. Those days from January to May were the most trying, the most challenging, the most hopeless, and eventually the most hope-filled days of our lives. 

For me, there is nothing more rewarding, more challenging, more gratifying and humbling, more heartwarming and, sometimes, heartbreaking than being a mother. So, to watch my own child, my newborn baby, lay still, so heavily sedated and totally dependent on machines, medication, and transfusions for such a long time was the most gut wrenching experience of my life.

I felt totally helpless. There was nothing I could do, except keep Patrick company and pray…. (I also busied myself with learning all my newly acquired medical jargon, finding the best spot for cell service in the hospital, and plotting the quickest route from the garage to Newborn Special Care Unit.)

But most of the time, they were brutal days for me, for us. And especially for Patrick. I signed more consent forms for procedures than I care to remember. We met with specialist after specialist, I spoke with Drs in other states, I saw every nook and cranny it seems of Yale-New-Haven Hospital – MRI, Radiation, Interventional Radiology, Operating Rooms… and waiting rooms aplenty.

Because of your prayers, and your kindness to us, those days are behind us.

When Patrick was discharged from Yale last May, he was handsomely sporting his oxygen cannula and feeding tube. He was prescribed six medications, and was on a ‘hospital’ schedule for feedings and meds around the clock. We quickly worked to adapt him and his schedule to fit in with a family that sleeps at night (this took MONTHS…)

Today, Patrick is almost 16 months old. He no longer uses a feeding tube, or oxygen. He is off all but one of his medications. He’s got lots of teeth and is recently discovering a love of Haagen-Daz milkshakes, along with his usual regimen of avocados, bananas, custard, Cheez-doodles and Chobani yogurt.  He is crawling everywhere, and pulling himself to kneeling and standing. He is opening cabinets and doors, and is obsessed with buttons on TVs and DVD players. 

He still receives physical therapy twice a week, and I take him to a private feeding therapist every other week. But he's doing great. 

Patrick's smile lights up the room. He greets us readily with “Mama” and “Dada”. He gives kisses abundantly, and when you ask him “Where is the cute baby?” he tilts his head to the side and smiles… He points to things he wants, proclaiming, “Dat!”.  He loves to play with the TV and wii remotes, and if I'd let him, he'd chew on my iPhone. 

And, when his big brother Luke enters the room, he laughs with his mouth wide open, with that smile that could stop you in your tracks.

He is a joy-filled baby, and he spreads his joy every where he goes. 

He is our miracle for sure. 

We’ve come a long way through this year. And we couldn’t have done it without you.

We are forever grateful.

Rachel, Jeff, Luke & Patrick

Thursday, January 6, 2011

Happy Birthday, Baby.

Patrick, with his cousin, Lauren, and big brother, Luke.

I've been thinking about what I might write in This Space for a very long time. What would the day feel like when it finally arrived? Would I be a basket case? Would I cry? Would I laugh? How would we spend our day?

I made no plans for today, or for tonight. I did take the day off from work and have just been enjoying Patrick's company all day. Earlier this morning, I took him to my office to meet my amazing friends who prayed for him from his first hour, and who continually take care of me.

Around lunchtime, my sisters, my parents and my neice joined us at home for a spontaneous lunch -- Jeff came home from work early, and of course Luke is here too. We couldn't help but recall and talk about This Day one year ago, but all in all, our afternoon has been joy-filled!

I know I will reflect and write more about this milestone in the days to come, but for now I just wanted to mark the moment.

I must share with you a most beautiful column written by my very talented sister Erin today. It captures the day of Patrick's birth so beautifully.

Happy Birthday, P!