(oldie photos but still some of my favorites)
I started this "Mama Diaries" series to be able to be free to talk about anything. But here comes a time in my life when I have found myself with a lump in my throat and now words. When thinking about the last year... About the year where my heart was fuller than ever yet broken at the same time. I started writing this post months ago, yet hesitated hitting publish.
Our sweet babe had had a low grade fever for about a month. But with teething and no other real symptoms we held off on any panic. At her 9 month appointment I mentioned it to the pediatrician, so she decided to run some bloodwork.
I knew instantly that something was wrong the moment that our pedi called us that night. Months before (after Ami's 4 month wellness check-up) we got a similar call to tell us about Ami's hips and that she would wear a brace, so the moment that I saw the call come through this time, I held my breath. And I honestly held it from August until February.
The only words I remember were her white blood count was very low. I will stop here and say that Ami is ok, we have answers and it has taken a long time to adjust to our new normal but she is ok.
Our pediatrician wanted to run more tests, hold off on vaccinations because of a risk of her not being able to fight off any live viruses. But every time we went in she had a fever and the blood work was just not going to give us the answers we needed.
And long, scary (for us) story short we ended up with months of no real answers and our brains/hearts racing and preparing for worse case scenarios. The words blood cancers and auto immune diseases and so many other things that we read kept me on the verge of wanting to vomit, cry or scream at any moment. We had some scary emergency visits, one that allowed us to see how scary it is to have a babe that can't fight off infection, high fevers, catheters, blood work and still not a clear picture.
We could not keep her healthy (thank you pre-school germs!) and finally we made the decision with our pedi to pull Zoe from school and get everyone healthy. We paused dance and yoga and play dates. It was the hardest on our Zoe but we did what we had to. Like any parent would do to keep our baby healthy.
Fast forward through months of worry, tests and becoming familiar with the hematology team at Children's Hospital, all the way to a diagnosis of Neutropenia. Which in laymen terms means that Amani's body attacks the white blood cells that your body produces daily to fight infection.
What does this mean? A lot. But mainly, it means a new normal for our family. It means that this flu/cold season was a time of learning this new normal, limited playdates, constant disinfecting of everything, stretches of panic and anxiety from mama. And honestly an isolating time. And monitoring her temperature. Anything over 101.1 warrants a visit to her Hematologist at Children's Hospital or the ER (which is the least likely place for a baby with Neutropenia) with our diagnosis card that supplies a doctor with the severity of a low grade fever and her treatment plan. But mainly it's something we can and will live with.
I had such a hard time with saying any of this out loud, because I felt like any time we spoke about everything it made it REAL. I mean guys, it was real, it was gut wrenching real but you know, saying it out loud just really messed with me and had me just isolating myself. Feeling like I was drowning, like I couldn't take a breath and just fucking scared. These are our babies. no one in this world to keep them safe other than us and well the thought of not being able to protect her really broke me down.
I write this so that any of you going through something similar. So that any time life makes you feel like you're a failure or just pure uncertainty that may drive you insane. When you feel completely alone. Know that you aren't. Know that you can always find a place to lean on here. For me it was my husband, a handful of friends/family that just listened. Those that allowed me to fear and wept with me instead of saying it would be ok. Those that let me be weak and fall to my knees instead of telling me to be strong.
Our lives have changed, and I am grateful for my girls in a way that I can't explain with just words. I look at them, through very different eyes, a bigger softer heart and with such hope. I also know that I want to do more for mamas that sat with me in hospital waiting rooms, mamas with babies that didn't get the best case scenario. I know I was meant to do more with that and I will. Thank you for listening, for reading, for following, for praying, for everything. You guys are my village and this little place is such a place of therapy for me.
PS I truly thank those of you that have been on this journey with us. The words of wisdom, the sweet slings that helped us get through each day, the prayers, thoughts and just pure love for our girl. Man oh man, I am the luckiest girl in the world. THANK YOU.