In The Beginning
On June 30, 2010, Megan Smith's life would be changed forever. Not only did she become a mom for the first time, but she was also blessed enough to become the mother to an angel, Parker. Megan knew a couple of weeks before Parker was born that she was going to be 'different' and the doctors were unsure of how her life would be after she entered this world. They prepared Megan for the unthinkable. There were close to 20 people in the operating room during her C-section and the doctors immediately rushed her baby girl straight to NICU for lots of testing and to be stabilized. On day two, a doctor entered the room to tell Megan of the results . . . Parker was diagnosed with Lissencephaly, Microcephaly, and CVI (Cortical Visual Impairment). Megan's world came crashing down as they told her statistics and 'what to expect.' The doctors didn't even think Parker would ever make it home from the hospital. They were wrong. Parker left the hospital on the same day Megan was discharged. It was time to adjust to a life much different than the one she had been envisioning for the last nine months. A 'new normal,' which would end up being how Megan would describe every obstacle she and Parker were about to face.
At Parker's two week check-up, Megan asked her doctor to give her a swallow study. With hesitation, he finally agreed and it was a blessing he did. They found out Parker was silently aspirating every swallow and in every consistency. It was deemed unsafe for her to eat by mouth anymore and they were admitted to learn about feeding tubes. Parker had an NG tube (feeding tube that goes down her nose to her stomach) for ten weeks before they placed her G tube (permanent feeding tube in her stomach placed with surgery). Two weeks later, at 14 weeks old, Parker had another surgery called a Nissen Fundoplication (prevents her from throwing up) to help with her acid reflux and to prevent aspirating on her vomit. At three weeks old, Parker had her first seizure, a gran mal. They were told these would most likely happen at some point. They battled seizures pretty much daily from that day on. Parker went through many surgeries, countless emergency room visits, doctor appointments weekly, and more hospitalizations than any one life should ever have to endure, but her smile never left her face.
Who Was Parker?
Parker was happy from the beginning. All smiles. Easy going. But she was also very bossy and knew what she wanted. If she wanted to be walked around being held all day, then you better call for back up to help because she was going to ensure she was held and walked around by someone. The doctors said she would never understand her surroundings, but they were wrong about that, too. She knew her mom. Really knew her mom. When Megan walked in the door from work, no matter where she was when she heard Megan's voice, she would start flailing her arms and legs, smiling and even laughing sometimes. And she absolutely knew her dad; he was her comfort, her safe place. They had the most beautiful daddy-daughter bond. Parker only knew unconditional love. She never met a person whose shoulder or chest she wouldn't bury herself into, get comfortable and fall asleep. She exuded love. She exuded patience, pure joy, genuine happiness, all things that are good in this world and in the next. She was the soul that changed lives.
During 2011, Parker had her first birthday and she was doing wonderfully. Yes, she was tube fed and had seizures, but the seizures were under the family's version of control (at this point she was on two to three anti-seizure meds and was having less than 20 seizures a week). Parker responded well to her physical, occupational and vision therapies. She was holding her head pretty well (even though she sometimes looked like a bobble head), tolerated tummy time, did well in her gait trainer and was able to sit shortly while propped. She was even laughing and smiling intentionally at things and people, the doctors had said she would never be able to do this. She loved proving them wrong with lots of things. They even went almost the full year without being admitted to the hospital, just temporary emergency department visits, countless doctor appointments and a day surgery to tighten her eye muscles.