We’ve come to part III of of Lila’s story as told by mom, Aimee. We feel very blessed that Aimme took the time to share her feelings and emotions with our PHS readers about her time on bedrest, in the hospital, and through diagnosis of her perfect little lady. We hope that Lila’s story can help other families in similar situations. Caring for a medically-fragile child is certainly not easy, but PHS is here to help and we truly believe each and every one of these children are born to the perfect parents, just like Lila was with her mom and dad. Please enjoy reading part I and part II of this amazing story and wrapping it up with part III here.
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Once in the warmth and solitude of our home as a new family of three, I waited for life to resume some version of normalcy. I looked for the joy that a new mother is supposed to feel, especially one who has been without her baby for so long, but it was hard to find at first.
Of course we were elated to finally be “on the outside” of the hospital and adjusting to our new lives without the “beep beep beeps” of monitors and the sterile smells of foaming hand sanitizer. But nothing about Lila’s homecoming was easy or “normal,” and certainly not the way I imagined it would be when I sat next to her all those days in the hospital.
The support of phone calls, e-mails and visitors eventually slowed to a trickle and the three of us were left to figure things out. There was the lack of sleep, like any new parent deals with, but the anxiety over Lila’s health and what her future would be like were paralyzing. Fear was a four-letter word that I got to know real well in the recent months and quickly realized once home that it wouldn’t be going away anytime soon. I was in a constant state of limbo seemingly waiting for the other shoe to drop.
I have to take a moment to pause, and point out the services of Pediatric Home Service. It’s not the kind of company you want to get to know … unless you need home-based services for your child. Then, PHS becomes your best friend. Every week the phone would ring and I’d usually have Lila in my arms with 50 feet of oxygen tubing following behind. I’d be greeted with a friendly voice from the customer service department asking if we needed any equipment delivered. Usually we didn’t, but every once in awhile we needed to replace oxygen tanks or return empty ones. All I had to do was say the words and the job would get done. Their system couldn’t be any more fluid and as a mother whose life was in upheaval at the time, I will be forever grateful for that constant.
It’s now been a year since Lila came home from the hospital. Everyone said, “It will get easier,” “This will soon be a distant memory.” I didn’t believe them. But somewhere along the way, things did get easier. I traded in mourning the loss of a “perfect” pregnancy and a “perfect” child for accepting – and celebrating – my daughter for who she was meant to always be, and giving thanks that someone somewhere chose ME to be her mother.
Little by little, the feeding tube went away, then the oxygen, and the medications. It took awhile, but we have adjusted to our new lives, one where therapy and doctor’s appointments still trump trips to Target or lunch with friends. And that’s OK. This is the path we’re on and we’ll make our way. All we have to do is follow Lila’s lead.
Lila is 14 months old and is the happiest girl around. She has brought joy and fulfillment to our lives in a way that I never thought would be possible all those months ago. Yes, she does have Cerebral Palsy, but it appears to be mild at this point and certainly doesn’t define her. She is healthy and shows no signs of long-term damage to her lungs. In fact, she just had her first cold.
We think she’s close to sitting on her own and she loves taking steps while we hold her up under her arms. She could eat raisins and string cheese all day long and she loves radio jingles! In her first year, Lila has “walked” across the Headwaters of the Mississippi, cheered for the Minnesota Twins, painted masterpieces, “marched” in honor of other babies like her, and charmed the hearts of people worldwide.
She is my hero and I wouldn’t change a thing about her. We think she’s pretty perfect.
12 months in 12 minutes from Aimee Tjader on Vimeo.
