Reminders May 19, 2011
I’ve had a very good week considering all the peculiar messages that have come my way. You know when you take notice of something that you’ve never seen before, then suddenly it appears everywhere? Well that’s been my week in a nutshell.
I returned to work on Monday and felt really good about it. Of course it was tough leaving Lila again, but we both are in much better places this time around, so I feel a sense of peace. I got to work and checked my mailbox. I opened up a press kit and the words stared at me: “Preemie Parents: 26 Ways to Grow with Your Premature Baby.” Huh. The blue folder contained press materials for a new book mostly about getting through the NICU experience. Did some PR company know about me? Is someone trying to tell me something? No, probably not. A co-worker probably received the materials and passed them on to me. No big deal, but a gentle reminder nonetheless of the past eight months.
Next up: “Why having kids is bad for your health,” a TIME magazine article about mothers being unhealthier than non-mothers because they have less time to exercise and eat well. Well isn’t THAT stating the obvious.
And for the kicker, the words that sent shivers up my spine and took my breath away. “Baseball league for disabilities where one of the kids has hypotonia (low muscle tone; she didn’t start walking until she was 3 1/2 and still can’t run or jump) and speech apraxia (“where the brain and lips don’t talk to each other.”) I stared at the screen, leaned back in my chair and called my husband. As a follow-up to baseball great Harmon Killebrew’s death this week, I was going to be writing about the Miracle League that he generously supported. The organization gives EVERY kid — no matter their ability — the chance to play baseball. I was going to have to attend the next game and watch children with varying special needs play my favorite game. Could I handle seeing kids in wheelchairs? With splints on? Unable to talk? No doubt, there would be several kids with Cerebral Palsy, which Lila is at risk of developing due to her PVL (brain injury). I made up my mind that I can’t live my life in fear. There is beauty in ALL living things and it’s time to embrace our situation for all that it is. I went to the game.
At first I had a hard time looking at these children in the eyes. Then they started talking to me. One of them sang “Take Me Out to the Ballgame,” my all-time favorite song to teach any little kid; one little boy didn’t want to play the game, but when he finally got up to bat, he hit a homerun; and a girl in a wheelchair stopped just before crossing home plate and waited for the crowd to cheer her on as she finally rolled past the base. They all had such light in their eyes, such happiness. In a week full of curious signs, these kids left me with the most important reminder of all — as Dr. Hoekstra once told me, they, too, have a purpose in this life. Every single one of them.
Maddie’s mom May 9, 2011
My first of many Mothers Days was dedicated to my friend Jessica, the bravest mommy I know. I’ve only met Jessica once — well twice, really — but we share a very special bond. To me, Jessica epitomizes the true meaning of motherhood.
I first crossed paths with Jess online last summer while we were both on bedrest for Preterm Premature Rupture of Membranes. While I complained about icky hospital food and nurses with no regard for privacy, Jessica endured the bravest fight of her life just across the river in St. Paul. Sadly, Jessica’s sweet angel Madeline Deborah is not with us today. She was born Aug. 17 at 24 weeks and 5 days gestation. She weighed 1 lb. 4 oz. and lived for 4 precious hours. Maddie was a fighter, just like her mama. BOTH of them are mine and Lila’s forever heroes.
Jess and I remained in touch through an incredible group of 15 women from all over the world who’ve all experienced pPROM. It’s a private group on Facebook called pPROM Warriors and we share the triumphs and tribulations of the trauma of pPROM, including some very personal information. This group has saved me. It sounds cliche, but it’s so true and I think many of them would say the same thing about themselves.
Fast-forward several months. I’m at the doctor’s office making appointments at the front desk when I hear my name. I turn to see Jessica. Keep in mind we had not met in person up to this point. Shocked and amazed, we both stared at each other for a moment before settling into each others’ arms for a tearful embrace. We promised to make a point of getting together. It was ridiculous that we hadn’t met up until then and there’s a lot of excuses for it, but none that are truly valid. We both walked away from that bizarre encounter shaken by the fact that something bigger than us put two very broken women in the same room at the same moment to hold each other up. It was incredible. It turns out that Jess had recognized the earrings I was wearing from one of my Facebook pictures and suddenly my name was coming out of her mouth.
I finally met up with this incredible woman again a few weeks ago when she came over to see me and Lila. First of all, she brought homemade cupcakes, so I loved her from the moment she stepped in the door. But honestly, I was a little concerned about how seeing Lila would affect her. I could only imagine how difficult it would be to see other babies who are the same age as Maddie would be. But there was something very special that I saw that day between Lila and Jess. Lila was going through a bit of stranger anxiety at the time, firing off a skeptical eyebrow to anyone other than me and her dad. But not with Jessica. She took to her immediately and I watched in amazement the joy that poured out of both of them. I saw the mother in Jess.
There was a moment when Jess was playing peek-a-boo with Lila on the couch that a little unknown boy came to my mind. I was in the midst of feeding hell with Lila and took a timeout in the doctor’s office after one of her appointments to feed her while she slept. I sat her up to burp her and upon seeing that I had a baby in my arms, a little boy exclaimed to his mother, “Hey! That’s a mom, too!” I looked down at my sleeping baby, kissed her head and thought to myself, “Yes, I am a mom. A very lucky mom.”
And that’s what I wanted to say to Jessica that day. “Hey! You’re a mom, too!” Even though Maddie’s not here, it doesn’t change the fact that Jessica fought her damndest to keep Maddie safe and give her the best life that she could. No matter how short of time, she held her in her arms with as much love as any mother would.
To top it all off, Jessica lost her own mother a few years ago. Utterly heart-wrenching. I cannot fathom life without my daughter, let alone my own mother. I’ve spent a good amount of time feeling sorry for myself lately, but it’s no way to live and so I’m taking cues from my new friend. She’s had a rough go of it and it’s not fair, there’s no doubt about that. But I see such positivity and zest for life inside her — it’s clear that her mom did a damn good job while she was here. I don’t think I’ve been this deeply affected by the love and humility of someone in a long time. I think I have a lot to learn from her and I’m looking forward to getting to know my new friend, Maddie’s Mom.
Hi again, it’s me May 3, 2011
I think it’s finally time to return to writing. A lot has happened over the past few months, more than I can possibly start to describe. I guess things had to get harder before they got better. I didn’t think it could get worse than watching your baby struggle in a hospital bed covered in tubes and wires, but there’s so much I didn’t know back then. Despite Lila’s success, things continued to pile up in my world. I was obsessive over her feedings and weight gain. No, REALLY obsessive. My happiness was non-existent and the smallest things seemed to be so incredibly difficult. I wasn’t nice to the people who love me the most and for that, I’m so very sorry. I wasn’t taking time for myself and never really acknowledged all that I’ve been through.
I’ve been hard at work trying to pull myself together over the last couple of months. There’s a lot that I’m not ready to talk about, but I’m happy to say that things are getting much better. I have a wonderful therapist who’s helping me and most important, amazingly supportive family and friends. I have been taking some time off of work to focus solely on my health and care for Lila. I’ve stripped away all of the extras in my life — I call it: “Mission Back to Basics.” Things are a lot brighter in my life, but there’s still a lot of work to do. I’m starting to add back normal things and am hopeful for the future. One day at a time, that’s all I can do.
Lila is doing AWESOME. We are seeing occupational therapy once a week to work on her feeding issues and will see a private physical therapist starting next week. She has made a lot of progress. She drinks her bottles awake and feedings are no longer fraught with tears and anxiety. We started her on solids a few weeks ago and she really enjoys eating. There are still a few challenges, but she’s come so far and we definitely have reason to celebrate.
The best news is that Lila is a happy and content baby. SOOOOO happy! She smiles at everyone and has stolen the hearts of many. Her personality has really come through the past couple of weeks and she is a darling charmer. I am so proud of her. I don’t know what the future holds for Lila, but I do know that she has the personality to get her whatever she wants in life. Her smile alone will take her far.
I hope I can find the strength, energy and time to update you on a more regular basis. No promises, but I have good intentions. Thank you for hanging in there with me.