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!