It’s too long a story, but Harry has been having issues with sleep, feeding, etc for awhile. I went to the pediatrician six weeks ago and told him I really felt something was wrong, and he sent us to occupational therapy to help with his feedings. At each of those appointments I reiterated I felt this was a breathing problem, not a feeding issue, but nada. Then finally last week I asked to see another Doctor in the practice and after a few basic tests we were sent to Texas Childrens Hospital where we were checked in for two days while more intensive tests were run. We have a diagnosis, and the good news is that it is something they think he will grow out of in 2-12 years. The bad news is, well, the whole thing is bullshit bad news really.
I just can’t believe we are going through this again. When we found out about Grace, it sent our life into complete upheaval. Pete quit his job, we sold our house, moved from Chicago to Texas, and a lot of the past three years has been spent trying to put the pieces back again. I am trying to keep a positive attitude, we are so lucky in so many ways, but if I am honest I am feeling a little defeated right now.
And I would love to be able to share more about what we are dealing with. With children’s health issues I have seen a lot of times the hopeful cases move on and don’t share their stories, and the tragedies try to find a community of support- often online. When Grace was diagnosed I spent hours on the internet looking for hope, and all I found were the saddest stories imaginable. Googling your childs health issues is dark and lonely enough, it would be nice if some positivity was in the mix.
When we decided to share what we were going through with Grace my intention was to spread awareness, and also provide a hopeful testimonial amidst all of the heartbreak. And that did happen, I have spent the past few years emailing with moms going through what we went through. It made me feel productive during a time when all I could really do was wait and see.
And I wish we could do that again- I have already had someone reach out based on our Instagram who is a few years ahead of us in the diagnosis and it has meant everything, but I just can’t. For a lot of reasons- this blog isn’t the same environment it was three years ago, and I am not the same parent I was then either.
So what now? I have been working at an unrealistic pace for the past two years, and I have to take better care of myself so I can take better care of my family. I am overextended, and I can do whatever it takes to keep up with my responsibilities day to day, but I am left with no extra bandwidth to cope when things go wrong. I need to simplify, and unfortunately that means taking a break from this blog place that has meant so much to me. I am so grateful for everything this blog and all of you have given me, but I need to focus on my family.
I don’t want to leave anyone hanging or be disrespectful to the tremendous support y’all have so generously given me, so I wanted to sign off properly. When I started this blog I had moved to a new city and was starting to work as the assistant to an interior designer- I didn’t have much direction or ambition, nor did I ever consider that I had the talent to actually do design work on my own. Through all of our transitions the encouragement from all of you inspired me to work harder and dream bigger and I cannot believe all of the goodness that has brought. I am so grateful for all of you, and I will check back in here if/when I have any great work to share, but I have to focus on my private life.
So for now, I gotta go. So much love and thanks.
I have received several emails from moms worried their children/babies might have Harry’s condition based on the things I have posted previously about his development. Harry’s primary issue isn’t sleep- it has to do with his breathing and I have always thought- and now have confirmed- that his sleeping and feeding issues are related to his breathing. When Harry breathes the area around his clavicle at the base of his neck collapses, and his whole body looks like it is retracting/working hard. That isn’t always what his condition looks like, but that is what clued us in to this as a breathing issue.
If you feel like your babies/children might have the same condition or similar symptoms, email me any time and I am more than happy to discuss privately what led us to his diagnosis. On a really general level if you are concerned about your child and our situation is raising red flags, have your pediatrician do a pulse oximetry test- it is completely non invasive and measures their blood oxygen saturation levels. That was the first thing the doctor we went to for our second opinion did that indicated something was off. The second is to have your doctor listen to their lungs, and if either of those two things are abnormal, a chest x-ray would be the next step. Again- email me if you want to discuss further, I would be more than happy to share what got us here privately. From what we have learned so far his condition is often misdiagnosed, and is likely not as rare as has been reported.
Thank you all so much for the kind comments and emails, I am humbled by all of your support.