The Brutal Truth – I’m not okay


Little Bear came home this past Monday. And for the first two days, we got a lull in the chaos of bringing a baby home for the first time. Then on Wednesday, he had his first pediatrician appointment. I had asked Little Monkey’s pediatrician if she would feel comfortable being Little Bear’s pediatrician. She immediately said she would be his pediatrician, and she actually called me the day after he was born and I was still in the hospital. I must have put down her name somewhere saying that she would be his pediatrician (although I have no recollection of having done so…must have been when I was in labor before the c-section…). She wanted to check in and find out how everything had gone.

A little background about this amazing doctor. When we first moved to Colorado, Little Monkey needed a pediatrician and I did what I’ve always done with finding new doctors (pretty much close my eyes and point and then go with whatever doctor is under my finger…) and I happened to pick her. We saw her for two of Little Monkey’s appointments, then I found out that she had left that practice. I was so bummed, I really liked her and Ender responded well to her! So I found out which practice she had moved to, and we followed her. She was thrilled to see us at his next appointment. She remembered Ender and that meant a lot to me. I felt like she cared more for my child(ren) than other doctors I’ve seen. So of course I wanted her to be Little Bear’s doctor.

At his appointment with her on Wednesday, she almost made me start crying. She was so impressed with Little Bear and his progress (he had already gained 5oz since getting discharged two days before) but she also took a lot of time to learn everything she could about his stay in the NICU, his incision, the steps for future care, and wanted to be as hands on as possible with knowing how he was and is doing. She stopped at one point and turned to me and asked if I was doing okay. She wanted to make sure I didn’t feel too overwhelmed or like I was alone with all of his care and appointments and everything. She told me that she would do everything she could to make sure I/we didn’t feel overwhelmed and would help with everything she could as well.

It’s a double edged sword having so many medical professionals coming alongside us and giving their support and genuine care for us and Little Bear. While I greatly greatly appreciate the support we’re getting, it is also a bittersweet reminder of WHY they’re so supportive. That reminder that this will be our life from here on out. I started losing it on Thursday. I had received so many phones calls about new appointments for Little Bear. It was like we got those first three days of him being home to settle and find a rhythm and then boom, Thursday, it was like the flood gates had opened up and wave after wave of things necessary to his care kept being pushed towards me. I sat there looking at my calendar and felt my heart sinking. Some appointments won’t be for another two months, but others, some very important ones regarding his head, will be three days in a row of appointments this next week. I texted a fellow mama warrior and asked if the appointments ever end. Will he ever get to be a normal baby?

I am the mama of a baby who is on borrowed time right now with his head. I am shocked we got sent home from the NICU with Little Bear NOT having a shunt. That waiting, that watching is nerve wracking. 85% of spina bifida (myelomeningocele) babies end up with shunts. Some not for a good bit after being born, some the day they’re born, some a week later. But that 15%? Yeah, I feel like expecting/hoping Little Bear to fall into that small percentage is way too presumptuous. Something has to go wrong…Right? Or is he going to keep breaking the barriers and proving everyone wrong? Of course as his mama, I’m going to be cheering him on every step of the way, but I still worry about the what ifs, the probable maybes.

It’s difficult for me to put into words the feelings I get when I look at my baby in someone else’s arms and know that his life isn’t going to follow the typical path of a fully healthy and whole newborn. This little child is going to blaze such awesome paths, I have no doubt of that. But no mama wants to look at their child and fear that they’re going to miss those signs that something is going wrong and they catch them too late to prevent more damage from being done. No mama wants to stand by their baby’s crib and check and double check that their oxygen tank is still functioning and wondering when his next surgery is going to be. No mama wants to watch an incision heal that takes up a third of her baby’s back knowing that that will not be his last incision.

Little Bear and I will share scars that mark his entrance into this world. If I could, I would take all of his scars (present and future ones), but I can’t. I look at my tiny baby and know that his future is going to include pain for him, and struggles, but I also know without a doubt that my child is one hell of a fighter. The moment I should be worried is when HE gives up. Little Bear made his appearance exactly 4 months to the day after we got the diagnosis of myelomeningocele. Those four months were some of the longest and fastest I have ever experienced. Those months were full of major emotional ups and downs as I considered what was coming the moment he would arrive. I thought I’d get a little bit more time, but maybe it was a good thing he decided to arrive so early? I didn’t have a chance to really get wrapped up in what his birth day would mean. However, now that he’s here, the emotions and thoughts I had before he was born have now increased ten fold. The need to fight for my child and be his advocate are so strong it overwhelms me at times. I am learning to get on the phone (something that’s always been a struggle for me) and call those doctors to find out what I need to do when something goes wrong or sideways. I am learning to trust my already sensitive “gut” even more and learning the great significance of following through with my mama bear instincts especially when it comes to Little Bear. I have to come out roaring to fight for my baby. I’m grateful I haven’t encountered too many medical professionals YET who have gotten in my way. But my claws are out, my baby may be a fighter, but he’s got a mama who’s willing to put herself in harms way to make sure he stays safe.

So many people keep telling me how amazed they are with how well I’m doing with everything. But can I tell you a secret? I’m not doing well. I feel like I could be shattered at any moment. I’m very good at pushing through the hell to get to the calm. I know the crazy of his first few months are going to pass. I know that he’s not going to be on oxygen forever. I know he’s going to be big enough I won’t feel worried about having to protect his little body so much in his car seat. I know, I know, I know, I know we will find a rhythm and we’ll fall into it and adjust. But for now? The moments of feeling insanely overwhelmed keep catching me off guard. The moments of sudden tears over how difficult this is on my heart keep creeping in. Most of the day, most of the night, I am okay. I am managing to keep track of everything. But I don’t always feel like I’m living in a real reality right now. Of all things, I can understand now why moms of two plus kids forget to wash their hair. I realized yesterday that I actually couldn’t remember when I had last washed my hair. Taken a shower, sure, I do that every morning without fail. That’s part of self-care I will not give up. Some days are easier than others, some have a lot more dark moments, and some go by so fast I blink and it’s already 11pm again and I’m not really sure what happened during the day.

And that’s where I’m honestly at for the time being. It is hard. I don’t want to remind myself that this is hard, instead I want to consider all of this simply a challenge to overcome. But it is hard. It is hard on my heart and soul merely knowing what his future could hold. I am trying hard to focus on the present and just get through one day at a time, but that future is always there lurking. It’s always glaring over my shoulder as I look down at my baby. I worry for his heart and soul. How is he going to handle things? How will his heart hold up when he realizes he can’t do something Little Monkey can do with ease? Will I be able to calm his fear as he goes into surgery and knows that that’s what is happening? I know, don’t borrow trouble from tomorrow. But these are the things that are constantly stalking around the back of my mind.

For the next month, my goal is to make sure I am taking time to take care of myself. I know it’s going to be very easy to forget to give myself a breather. And I think simply acknowledging the difficulty of all of this helps too. I’m not hiding and that’s what I promised this blog when I first started it. I wouldn’t hide the difficulties, the hardships, of what this journey was going to bring. I want other moms in my shoes to know that it’s okay to cry. It’s okay to have a meltdown (and in saying so, I’m giving myself permission to lose it and not hold it all in). It was one of my worst nightmares finding out about Little Bear’s diagnosis. My pregnancy with him turned into something mamas fear happening. We’ll make it through all of this with flying colors, but in the midst? It is hellish at times, it is hard, and mamas, if this is your story too, know that it’s okay to admit this? We can make it and we will make it. We are the mama bears fighting for our children.