A Bundle of Joy For A Diagnosis

Thanks to technology and social media, it is easy to meet people all over the world on a journey similar to your own. I came across Melanie Gomez through a writing group on Facebook. Like me, she was passionate about sharing her experiences of caring for a child with a disability as a person of faith. When she announced to our little group that she would be publishing a book and was looking for some volunteers to read and review it, I gladly volunteered. 

It has been 11 years ago since my daughter was diagnosed at birth with Down syndrome and an AV canal heart defect. The diagnosis was initially a shock as I was preparing for a healthy baby girl. As you can imagine though, in 11 years, I have worked through many emotions and thoughts. Things that seemed overwhelming back then are just not now. But, I didn't want to read Melanie's book for my daughter's diagnosis. I wanted it for my son's. 

For a year I lived with the idea that my son could have Ehlers-Danlos syndrome. A local doctor suggested the diagnosis but it took slightly over a year to get into a genetics doctor who could officially diagnosis the syndrome. I spent that year reading, having a range of emotions, talking myself out of the diagnosis, and then convincing myself that he probably had it. Three months ago, my 8 year old son was officially diagnosed. I had a year to prepare for the diagnosis, but it was final at that point. I had a second child with a diagnosis, so this book came at a timely moment for me. 

Bundle of Joy: A Devotional to Accompany Your Child's Diagnosis is a short book comprised of two parts. In Part 1, Melanie tells the story of how her son Nicolas was diagnosed with medical issues and a genetic condition as a baby. (I'll let you read the book to learn the specifics.) Melanie tells how her son was finally given a surprising diagnosis, the fears she had, and the thoughts that came while waiting for the answers. She, like me, bounced between thinking everything was fine and worrying that they weren't during the waiting time.

Melanie's son is now 16, so her family is well beyond those scary first few years of adjustment and tackling unknowns. As I read through her book, it is evident that the author writes as someone with the wisdom and perspective that only time can give. When you have a baby with a diagnosis, there are many worries and fears you have for the future. When you are told your child may have severe limitations, you wonder what your child may be able to do and if/how you will be able to raise this child. These questions in your head can be almost paralyzing, which is what Melanie tries to address in Part 2. 

In the second and last part of the book, there are 14 chapters or devotionals. Each chapter is 2.5-3 pages long, so they are short enough for a busy mom to digest in a relatively small amount of time. The length of the book is a positive for me because when your child is diagnosed, you are often given lots of information to read. I often got overwhelmed by the stack of helpful pamphlets and books that came home with my daughter. The longer the book was; the longer I put it aside. The length of these devotionals should not overwhelm a new mom who has other things on her mind.

Each devotional has a short scripture listed first followed by Melanie's thoughts on various subjects such as Peace, Why, or Choose. Though the chapters are short, there were several times I read a very thought-provoking line that made me say, "Wow!" Again, the wisdom that comes from a person who has been on this journey for 16 years is something that new moms need to read. Each chapter ends with an opportunity for reflection where Melanie asks the reader to think about one aspect within their current situation in a new way.

While Melanie's book title may indicate that it is geared towards moms of babies who are diagnosed, I feel this book is appropriate for any mother whose child receives a life-changing diagnosis. I appreciated reading this book when I did. I needed to be reminded of things that I was sure of at one time. I also needed to hear another mother's story that reminded me that I am not alone in my thoughts, feelings, and worries, but I don't have to let those negative things overpower the good. Every child truly is a bundle of joy, and it's important to not let a diagnosis steal the joy a child brings.

If you have a child who was recently diagnosed, then please consider buying this book. This would also make a great gift for a family member in your life who finds themselves dealing with a diagnosis as well.

You can read more of Melanie's writing at https://redefinespecial.com/. If you want to purchase the book from Amazon, click here.

Dreams, Reality, & the Emotional Collisions

Jaycee loves babies! This is a picture of her holding my newest niece. I have had a love-hate relationship with the idea of babies. That may sound heartless and weird but please keep reading.

After Jaycee was born, I didn't have a typically mothering experience. She was in congestive heart failure. My world revolved around high calorie feedings, medicine, doctors, home health checks, etc. I couldn't nurse her due to a weak suck. I couldn't even produce milk due to stress. I had a paper with signs of worsening heart failure and a phone number to call if I'm concerned that glared at me daily. I learned about post heart surgery care and oxygen tanks. My first year of motherhood was anything but normal.

I had so many emotions going on inside of me during that first year. There are too many to list and explain my reasoning. But I will say being around pregnant women and new moms became very hard for me.

When pregnant women talked about their unborn child, they talked with so much hope. They usually talked of a regular experience and a positive future. There's a big part of me that wants to warn them--"Well, what if things don't go as planned?"  But I never say it. Why should I? Pregnant women deserve to think and feel that way. Statistically speaking, things will probably go well and their baby will be fine. Which leaves me feeling like an outsider....

New babies and moms have been emotionally the hardest thing for me to be around. Over the years, it has gotten easier. In fact, when I first thought about doing this blog entry, I was going to write about how I'm over all these issues. But, being around my new niece has showed me that I am better but not 100% over all the emotions. Having a fairly typically experience with my son did provide me with a new perspective. I had something that I could relate to most people about. There was some "healing" after I had a regular old  pregnancy, delivery, and newborn/infant phase. There was no "diagnosis" talk from a doctor, NICU stay, or worries that he may not survive. It was just typical. Still, there are parts from my experience with Jaycee that were so powerful that they still affect my reactions and emotions today.

Here's some tough scenarios for me. New moms generally mention that they are grateful their baby is healthy. I'm glad their baby is healthy too but it feels like a back handed comment. I guess in a way it's like hearing that no one wants a baby like mine. Similarly, I have been present during awkward prayer requests for pregnancy screening tests that indicate a possible problem. As people prayed for things to be ok, I joined in too but also felt that even in church people don't want a baby like mine. Looking at a newborn is another reminder that things were just different for me. Holding a healthy baby sucking on a pacifier was, at one time, enough to make me cry.

Other times, I will admit that jealousy has been a big emotion I have felt. I am jealous that people can have a baby and go on about their lives. I still haven't been able to work full time since I had Jaycee. I'm fine with that fact now. I love having plenty of time at home and to take care of Jaycee when she's sick. Working full time doesn't even seem like a possibility for me ever. I am also really jealous if new parents can afford a nice house after starting a family. We have a decent house but it was suppose to be our starter one. With so much money going to Jaycee's medical expenses every year, I sometimes get frustrated with our situation.

In seven years, I have grown though. I can now ask questions about people's pregnancy or new baby. Before, I never really pried people for information. I was afraid they would say something that would upset me and I didn't really want to hear about their "perfect" experience. I can hold a baby and appreciate the gift that a parent has been given. I can then leave that new baby & family with my head held high. I have a family too. Maybe it isn't the family that other people dream about and plan for. But, it's the one that I have and love. Jaycee completes our family.