A New Chapter

As we go through life we face hard things. Sometimes really hard things. March 27, 2001 was the beginning of one of those hard things. My adorable redheaded baby was one week old and had just been diagnosed with a heart defect, and not a minor one. He was diagnosed with something called Truncus Arteriosus. In short his pulmonary artery and aorta never separated into the two distinct vessels that they should have separated into. The words of the cardiologist were “your baby’s heart is very sick”. I learned that he would need open heart surgery quickly, preferably within 2 weeks. At 15 days he went through that first LONG surgery and did great, but I was tossed into a very unfamiliar medical world.

I always loved medical things (Rescue 911 was one of my favorite shows as a child!) but this was a different level medical learning. I had to take Gabe to various specialists (cardiology, gastroenterology, pulmonology, neurology), and eventually he also had Speech Therapy and Occupational Therapy. Gabe was on several medications, some of which had to be carefully prepared in bottles as Zantac syrup was mint flavored and mint is really not a popular flavor for babies! A few months after being on Zantac, Gabe was diagnosed with aspiration, which had likely caused and/or complicated the issues that pulmonology was dealing with. The remedy for aspiration was to thicken his feeds. I would grind up rice cereal and combine it with formula to a honey consistency. The breathing issues improved some but he still needed regular breathing treatments, sometimes day and night. At times it was overwhelming. Keeping track of the specialists and the care was a huge responsibility and much of it fell on me as the part time working mom.

What I learned through those struggles though was just how much I loved medical things and health care. I learned about Gabe’s conditions easily and was confident in health care settings. I knew I may end up in health care one day but couldn’t exactly see how or where I would fit.

Last fall I took my first step into healthcare, volunteering in a PT clinic. I loved it. I loved the patient interaction and I loved learning about the patients medical struggles. In the spring I took medical terminology and did great- I ended the semester with a grade of over 100. This summer I started looking for a full time job. Most of the available jobs were not interesting to me. I didn’t want to find a job only to have to change again soon.

I applied for a job in health care in a great department and didn’t get it. I was pretty discouraged, but a couple of weeks later that same department called me about a position that involved assisting people with chronic and complex conditions. The goal is to help them avoid readmission to the hospital. The job description seemed like something I would love. I wasn’t sure, though, if I had enough experience. Most of my experience is in child care. I gave that interview my all and was confident. I clicked with the team and shared that although my resume doesn’t reflect my experience with health care, my life experience does. I shared a bit about Gabe and his struggles and the level of care coordination he required. They said “That’s what we do!”

I was called back to shadow for a few hours one day and waited anxiously for a call, and it came. I was offered the job with a very large employer. It’s full time with wonderful benefits and it is perfectly timed now that my boys are older. This week I started learning about the department and the care team. Next week I will start in my role, working closely with an RN and patients, doing home visits and helping to keep people healthy.

As I look at this amazing opportunity I can’t help but be thankful for my sweet child and his medically complex life. He had so many struggles and challenges but he rose above them, often with a smile on his face. I learned so much caring for his needs. I am also sure he has given me strength. That strength showed up after he died as I embarked on the journey of life without him, and it is here now as I start this new chapter of life. Gabe’s spirit is always here and he would be so proud. Tomorrow I will spend much of the day with a social worker in the ER. It is the same ER where Gabe was brought and where I saw the heroic efforts to try to save him. I anticipate it may be difficult, but hopefully I’ll have a bit of extra strength with me from my beautiful heart kid.

Author: griefmom

I am a mom to 3 wonderful boys- 2 on earth and one in heaven. I am married to a wonderful man who happens to be the love of my life. I am privileged to work with young moms as they learn to parent. I'm Catholic and have faith that I will one day see my son in heaven. This blog is about my journey- as I figure out who I am in the face of an unimaginable loss. Life is difficult but beauty can be found after the struggles. The struggles, in fact, make life even more beautiful.

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