June 29, 2014

In the spring of 2013, Ava’s journey lead her to the Mayo Clinic.  Ava had been to the Mayo Clinic previously. However, this was Oskar’s first visit.

As we waited in line to check in on the pediatric level, another mother, Billi Jo, walked up behind me in line. We chatted for a few minutes. We were both there without our husbands. She was there with Addi, the same age as Ava, and her sister, a baby.

Within minutes, Ava and Addi were talking away. They were giggling and sitting next to each other looking at a book.

Billi Jo and I looked at each other and smiled. Little did we know that a very special bond was created in that very moment. A relationship between two young girls that were both going through such horrible medical journeys.

A relationship between two young girls…

Addi almost lost her life a few years ago…She not only has one serious medical condition, she has multiple extremely serious medical conditions. There is no one on the planet like Addi.

Ava…little did she know that she was only days away from almost losing her life and about to go through the most horrible summer of her life…her life so far…

We both went through our appointments with the doctors. We ended up meeting again down the hall in a waiting room a few hours later. The girls started playing together right away. They giggled and looked so happy.

When the lab called Oskar’s name for his turn to give his blood, I didn’t really want to interrupt Ava’s fun with Addi. Billi Jo looked at me and I looked at her. She offered to watch Ava for the few minutes that it would take Oskar to get his blood taken. We both admitted that it was odd to trust a complete stranger with your child after only a few minutes of knowing each other…

Well, in that moment, Billi Jo and I created a bond as medical moms. We had no idea how much we would need each other over the next year and will continue to need each other….

The relationship between Ava and Addi as well as between Billi Jo and myself is special. The girls continued over the year to send pictures, letters, videos to one another. They became pen pals.

Billi Jo became one of my closet friends. She helped me survive through the following:

Ava’s multiple ER visits – being sent home

Ava’s screams every night from May 3, 2013 – the entire summer

Ava’s four cranial surgeries from a subdural hygroma

Ava’s shunt placement, which she will have for the rest of her life

Ava’s muscle biopsy/skin biopsy

Ava’s three dental surgeries

Ava’s official Autonomic Neuropathy diagnosis – small fiber polyneuropathy

Oskar and Lucy official Autonomic Neuropathy diagnosis

Oskar’s two nasal surgeries – Oskar has chronic sinusitis, deviated septum, adenoids and toncils removed and then adenoids growing back, allergies. He cannot breathe through his nose

Our move from Barrington, IL to Salt Lake City

Gina’s hip surgery in October

The list goes on and on…

Billi Jo can list what she has gone through this past year. Her cup flows over as well.

We met at the Mayo Clinic last year.

We just spent the weekend together at my parents’ home in Madison, WI.

The girls didn’t miss a beat. They were right back giggling and playing when Addi walked in the door. It was a weekend of fun for the girls and bonding for the moms. It was the weekend of Rhythm and Booms in Madison. Fireworks were launched on Lake Monona for the first time ever. Last year, Ava missed the fireworks. She had just had surgery. I watched them from her hospital room. It was a wonderful way to spend the weekend with Billi Jo, Addi, and her sister. Her sister is about the same age as my youngest, Lucy. Billi Jo is also pregnant and is planning to name her baby Oscar if he is a boy. Oscar is her husband’s father’s name.

Billi Jo and her girls were able to meet my entire immediate family. It was so wonderful to hear my mother and Billi Jo talk together. It was a release for me as well as for my mother. Billi Jo gave us advice on so many issues. Her coming this weekend was a blessing for more than just Addi and Ava.

The bond that sick children have with rare diseases or undiagnosed diseases is crucial. When my children hear that there are no other kids in the history of the world like them, it can be overwhelming and scary. Both Ava and Addi have a lot of documented anxiety from all of the medical experiences they have gone through. It’s hard to be different from other children. Looking at both Addi and Ava, you would never know the level of pain they have suffered. You would never know that they have things wrong with them like they do. They are both beautiful, extremely intelligent, loving, caring, funny and special.