Advertisements

Parker Lee and Her Legacy

The room was cold, sterile, and oh so quiet. I swear I could hear the doctor’s thoughts churning in his head. I could tell something wasn’t right, after all I was in an in depth sonogram that was lasting over an hour. All of a sudden he left the room quickly telling me I could get dressed. I’m not sure how long my mother and I waited for him to come back in, my memories always seem to distort minutes from hours and visa versa. But when he did appear his face said it all, his face told me what his words wanted to say…something definitely wasn’t right. ‘Your baby’s head hasn’t grown because her brain has stopped developing. We’re sending you downstairs for a fetal MRI to get a better look. We’ll go from there.’

That’s it? No more information? What do you mean it stopped developing? What does that mean for her? Of course my own brain couldn’t form any questions at that moment. I just looked at him as the walls were slowly closing in around me. The only word my mouth could mutter, ‘ok’. But as soon as he shut the door behind him after excusing himself my tears flowed freely. I was scared, lost, fearful, my mind raced. 

As my mother and I headed downstairs to the MRI I stared at the MRI order in my hand. Dazed. Handwritten on the bottom said ‘Microcephaly with sloping forehead’. I cried a little harder. 

My next appointment was to go over the MRI results. I can’t even remember the whole conversation. I remember it only confirmed what he had told me previously and that he had set up an appointment to go meet with the NICU main doctor directly following my appointment because ‘IF your baby survives birth she will need to go directly to the NICU’.
I was terrified hitting the buzzer to get into the NICU unit. ‘Ummm….my name is Megan. I was told I am to meet with the NICU doctor now.’ I heard the door click open. I pushed through it to discover a very sterile, surreal world. My mother and I were immediately lead to the center small room of three adjoining ones. There were three chairs and an empty bassinet. We all sat. And I half listened, in a daze. All I truly remember is being told my baby’s survival was questionable. That she had been referred to as a ‘baby with a smooth brain’, but no technical term. That the doctor calmly explained that the reason the babies in the connecting room were screaming, screaming like they were in the worst pain, was because it was time for their methadone dose as they were born addicted. The most memorable part of the visit was that I left pissed, seriously mad. My first fully identifiable emotion since first learning everything. I was pissed for the babies screaming, pissed for my unborn child, pissed for myself. These innocent children were brought into this world by selfish women who chose drugs over their health. They were left alone in this room addicted to heroine. They didn’t ask for that; how dare those mothers. And here I sat, a mother who fully embraced my pregnancy, changed my entire life in one day without hesitation, and followed every book and article I read, and yet, here I sat in a small NICU room being told of my child’s horrible and probable prognosis. My brain couldn’t wrap itself around what I felt was clear injustice. 

As the next 2 weeks flew by I was caught between researching and preparing for what was to come and this naive hope that they were all wrong and everything would be fine. It wasn’t hard to find the technical term of Lissencephaly when googling ‘smooth brain’, but it was hard to find solid information besides a paragraph or two, positive cases/perspective, or much support. I felt alone, isolated, desperate for someone who knew my inner most fears. This ‘rare’ world I was being thrown into was so intimidating, hard to navigate, so daunting. 

All the fears I had somehow transferred into hope the second my daughter was born. Any doubt instantly faded. Even on her second day of life when the doctor announced to me and my room full of visitors of the confirmation of my daughter’s rare brain malformation and all the things she’ll never do. I simply said ‘ok’ because I had hope and belief that she would write her own story. They often speak of ‘fight or flight’ when you’re in a hard spot, but what I thought at the time was the hardest situation only left me with a full, loving heart ready to fight – and fight I would. 

Nothing that you read tells you that a rare diagnosis for your child leads to a different kind of fight. Nothing that you read will they you that every time you get a new doctor or specialist, each ER visit, or therapist visit will require you to teach the professionals about your child’s rare diagnosis, their life, what it entails, and how they’re much more than what a textbook will say about them. No google search will tell you how life ‘really is’, the positive stories, the inspiring kids living with the same or similar rare diagnosis around the globe. No book or professional can truly explain what every day life, the normal ins and outs, is like with a complex child with a rare diagnosis unless it’s written by a caregiver. No one says that you’ll beg doctors to give you an ‘umbrella diagnosis’ in hopes that insurance will finally approve your child’s needed equipment because their rare diagnosis doesn’t have a ‘code’ yet or insurance doesn’t understand the diagnosis at all so they deny everything until you’ve appealed it ten times with ten different letters of medical necessity. None of this is written in the books. Majority of books don’t even touch on what to do if your child isn’t typical. 

During her first 6 months of life I fumbled through this ‘rare’ world. I found out just how much fight I had in me with daily calls to insurance or doctors, juggling weekly therapies and doctor appointments, ER trips, hospitalizations including one for 5.5 weeks, two surgeries, and so much frustration as I began to drown in debt due to co-pays, travel costs, and out of pocket costs on so much of her medical supplies. I watched my daughter fight daily, always with a smile on her face, and I knew I owed her everything in the world so I fought even harder. I also knew right then that our system was flawed. 

At almost 2.5 years of life my daughter went to her permanent home in heaven, but I knew she still needed me to fight. So I do, to this day, I fight for children like her. The rare, the undiagnosed, the complex, the forgotten. I fight for families like mine, by advocating, reinforcing, providing resources, sharing our stories. I knew that my world was never the same after Parker was born and it was even more changed after losing her. I had to take what she taught me and then turn my pain and darkness into love and light. For four years her smiling face has motivated me and turned The Parker Lee Project into what it is. The love, energy, and time I dedicated to Parker her entire life is now dedicated to helping children in our broken system. My days are full with heartbreaking and rewarding stories as I provide families with the medical supplies and equipment they desperately need at no cost to them. I still fight so hard so hopefully other parents and caregivers can focus their efforts, time, and money to another area in need while knowing their child has the life-saving and life-sustaining items they need and deserve because of The Parker Lee Project. 
Please visit:

http://theparkerleeproject.org/

https://m.facebook.com/theparkerleeproject/

Advertisements

Heidi’s Story 

In support of Rare Disease Awareness I’ve asked some fellow parents to share how “rare” impacted them. Their voices are as varied as their stories.  But all display strength and hope and make me proud to know them.  Please welcome Vic as she tells Heidi’s story. 
My name is Victoria Ochs, and if you told me 10 years ago I’d be a special needs mama someday, I would have told you that you were crazy and reading the wrong tea leaves. My destination, my life plan, included two “perfectly normal” children because I didn’t have what it takes to take on anything else. I always looked at the amazing mothers of special needs kids and thought, “I couldn’t do it. I don’t have the patience. I’m not a good enough person. I’ll never be a good enough person. God knows I couldn’t do it.”God knew otherwise.

This journey really began in late 2012; at that point, I had a precocious 3 ½ year old girl who really needed a sibling. A brother, to be exact, because that was “my plan”. And we’d be pregnant in a few months. Because that was also part of “my plan”. Three months turned into six months. Six months turned into twelve months. My husband was there for the flood of tears every month and the emotional tailspin that ensued every 26 days. The struggle to conceive slowly ate away at my faith in God’s plan for me, as each month brought a flood of tears and left me questioning if this period of barrenness was just punishment for the mistakes I had made in my life. Little did I know, He was preparing the gift of all gifts for me.

My OBGYN had called in a prescription for Clomid the day I found out I was pregnant with Heidi. I was down to my last pregnancy test, and I just thought, “what the heck?”. I was shocked at the result. It was March 2014, and finally, at long last, God had given me what I had so desperately asked for – a child.  

My pregnancy progressed normally as I prayed daily that I wouldn’t miscarry this child that had been over a year in the making. All the while, though I was blissfully happy, I felt something was different about this one. There was an undercurrent I couldn’t put my finger on. I went for a routine ultrasound at 19 weeks, and I was so excited because this would be the day my husband and I would celebrate the addition of a son to our family. After confirming that my baby was yet another girl, the tech noticed an enlarged kidney, and a bright spot in the heart on the ultrasound. “Probably nothing,” my OB reassured me, “but let’s send you to Carle to check the kidney”.

At 21 weeks, I was at Carle for what I thought would be a quick appointment, a formality really, her kidney was still normal, just a little different, no big deal. The maternal fetal medicine specialist began to look really hard at Heidi’s heart on the ultrasound in addition to the kidney. He began motioning to the tech and whispered that he needed to talk to someone. He went outside, and a sense of fear came over me like no other, I immediately knew, something is wrong. When he came back in, he said, “Has anyone ever talked to you two about down’s syndrome? You have three markers, and I’d put your odds pretty high that your baby has trisomy 21.” I immediately began to sob while my husband froze. The words had no more than rolled off his lips when I was offered the infamous “choice” —  Did I want to terminate this pregnancy?  My husband and I offered an emphatic “NO” and, although I was terrified at the unknown, I already couldn’t imagine my life without this child in it. The verdict was in, suspected ventricular septal defect, hydronephrosis (enlargement) of a kidney, and EIF (bright spot in the heart).  

The rest of my pregnancy was filled with a mixture of grief and fear, robbing me of the joy that was rightfully mine. I prayed. And I prayed. And I grieved. I grieved for the loss of “my plan”. Another “normal” child. I didn’t have the strength for this. I wasn’t made for this. I wasn’t a good enough person. How could I be good enough to be a mother to this baby? Would I have the patience? Would she ever be able to talk? To walk? To love and have friends? To go to school? The grief for the loss of “my plan” overwhelmed me some days.  

We partnered with St. Louis Children’s Hospital, where at 8 months pregnant, the pediatric cardiology team there diagnosed Heidi with coarctation of the aorta, an extremely serious defect that required corrective surgery at a few days old. I was terrified, but determined at that point—this baby was going to be surrounded by one of the very best pediatric teams in the country. At 38 weeks + 5 days, I was induced on the high risk floor at Barnes Jewish Hospital. And 10 hours later, I had a beautiful baby girl in my arms. The first thing I noticed was the amazing hair and the beautiful wide set eyes and the cutest little pug nose. I knew she was special. I knew something was different. And in that moment, I was determined to rise to the occasion, and the fear and grief gave way to determination.

By a miracle, Heidi was discharged from the NICU at 5 days old with no heart surgery. Her pediatric team was stunned when the defect she was certain she had had was nowhere to be found on any of the fetal echocardiograms. “I’m sorry — we’ve called this defect almost 300 times and been wrong twice. We just missed it. I’m so sorry,” Dr. Caroline Lee said. I squeezed her hand. “God took care of it – you weren’t wrong. He just fixed it!” In that moment, I realized that miracle I didn’t deserve (or so I thought), that person that I wasn’t supposed to be, all that was wrong. God gave me the miracle. He told me “you are this person. You are the perfect person to raise this baby.”

That’s not to say that I’m strong 100% of the time. I have moments where I still grieve for the loss of parts of “my plan” — but I don’t live there; I refuse to live in the dark. I live in the joy of the little things. Like when she finally ate baby food after 12 months of holding out. When she finally said mama. When she finally said dada. When she finally walked at 2 years old (not consistently yet, but we are getting there). Life is complicated, yes. Traditional daycare went out the window, but we gained an amazing nanny. Therapy 3x a week is part of the plan, and Heidi has proven that she can do many things – but she’s doing it on her own timeline, and defining her own normal, by His plan! We are likely on the autism spectrum though we are too young for an official diagnosis, and we have an unbalanced translocation between chromosomes 4 and 6 per genetic testing. Not Down’s, but similar in someways, and in many ways, much more delayed than trisomy 21. What can the doctor’s tell us? Nothing with certainty. Not a single human being on this planet shares Heidi’s genetic make up, as this isn’t a named syndrome – it just is! It’s just Heidi! And it’s perfectly beautiful. Her sister is perfectly patient. She loves Heidi exactly as she is!

Heidi has brought me a personal relationship with Jesus. She brought me to Him. And so, “my Plan” has given way to His. The journey IS the destination. And what an amazing journey it is!

 ​

Cool at School

The boys are well in to their school adventure, and it has been a great start! 

Their goals include things like name recognition, making an intentional movement on command, grasping, focusing their eyes, and increasing their sounds.  

In addition to the teacher, nurse, and classroom aids, they have time with PT, Vision, and Speech.  So having a team environment should prove to be beneficial!

They have missed due to illness, as feared.  They have had some really good days, as hoped.  The staff and kids are enamoured with them, as expected.  

I hope you enjoy these pictures of them exploring and growing!