My initiation into motherhood was a challenge to say the least….This all started five years ago when Abigail was born. What started out as what we thought to be a simple bilirubin issue turned out to be something that would change my life. Abigail didn’t just have newborn jaundice. It just wouldn’t go away. It kept getting worse and worse. She was on a bili blanket and getting labs every 12 hours and just wasn’t getting better. At one point I remember crying as they stuck her heal and she didn’t even flinch. The lab tech said “oh she’s such a good baby!” But I cried harder because that wasn’t normal and my baby wasn’t waking up anymore. Ever.  It was that day that during our daily talks with the pediatrician I requested a whole crap ton of labs. Liver panels, CBC, etc. I knew there was something  else wrong. The next day, we had them done and I was called to come into the office. It was a 3pm apt and I was in the room waiting and waiting. At 4, the office manager stuck her head in just to “meet me”. Then the doctor stuck her head in to apologize for the wait and to say she wanted to spend more time with me, so she’d see me last. My heart sunk. Something was wrong. When she came in, she told me Abigail’s HH was very low. Critical. She said some labs just weren’t right and this warranted more follow up. She never gave a diagnosis at this time. She then said she had contacted Dr. Werner from The Children’s Hospital of the Kings Daughters (CHKD) about Abigail. I worked at CHKD, remember….Dr. Werner was a Hem/onc doc. He was a CANCER Doctor. My heart sank a little. Then she said to me that it was okay, but that Abigail’s labs just weren’t good and the word Leukemia was used. She didn’t diagnose, just stated it could be consistent with this. I was to report to CHKD first thing in the morning for testing for Abigail. I remember nothing else after that.

What I do remember was being terrified, crying as I got into my car, collecting myself and calling Andrew telling him I was on my way and things weren’t good.When I arrived home, I collected myself again and put a blank face on. No tears. I no longer was crying. It was almost as if I was going in to discuss results with one of my patients. I had to be strong for the family. I had to not show Andrew I was scared, if I was scared, he’d be scared. Although I was terrified and my body literally hurt I told Andrew the news as he sat on the lazy boy across from me holding our daughter, 3 weeks and 4 days old. He sobbed, held her closer and said to me “we can’t lose her”. I still didn’t cry. I just told him it would all be okay. I knew id fix this. That’s what I do, I fix things and people.

This seems silly, right? We didn’t have any official diagnosis and it wasn’t like we were told our daughter was dying. But we were absolutely terrified. All we heard was cancer. We needed to hear nothing else.

I texted a doctor friend. I then called him crying. I’m so thankful for him because he reached out to Dr Werner that evening who helped reassure us that we were okay and we could even be admitted that night if it would help us be more comfortable. I declined, but was given the warning to watch Abigail through the night and monitor her breathing, ect. That was a sleepless night. I slept on my side, watching her breath in the bassinet and cried silently.

The next morning we rushed out. Abigail was put thru a million tests that day from regular labs, to kidney tests, xrays, ultrasounds, ect. We finally got settled into the room, on the cancer floor, around 6:40 PM. I remember because it was change of shift. It was a Friday. A really shitty Friday. We were admitted so my baby, my three week old could have a blood transfusion which would save her life.

I didn’t sleep that night. I held her in my arms watching the blood infuse in her tiny little hand making sure that IV didn’t go bad. I watched her sats and her heart rate on the monitor and I listened to my really exhausted husband snoring, somehow finding rest on that really uncomfortable pull out chair.

This story could go in forever, I literally could write a book….on each child individually, but I will cut it short.

Abigail didn’t have cancer. This is excellent, don’t get me wrong. But, we didn’t know what she had. Something in her tiny little body was causing her own body to break down her own red blood cells. It stumped the physicians. My entire 12 weeks of maternity leave was spent bringing Abigail into the hem/onc clinic three times a week for labs. Then twice a week, once a week, every week, every other, monthly and eventually less frequent. Her HH finally stabilized but her white blood count remained low which had us perplexed and worried about her immune system. She still to this day has a lower count.

I remember as I was going through this, people would say to me “at least she doesn’t have cancer.” Oh my gosh, I know. I was a pediatric nurse at that same hospital. I knew how lucky I was we dodged that diagnosis. Thank God. So, day after day, week after week I sat in the waiting room with little bald heads and held tears back saying to myself over and over again, “at least she doesn’t have cancer.” Andrew was back to work when all this was going on, so I took Abigail to her apts alone. I held her little body down as she cried each time for the labs. I tapped my foot with a blank mind waiting for the results each time. I again, listened to the parents in the waiting room discuss their kid’s next round of chemo, and sunk deep in my chair. I didn’t want them to know my kid ‘only’ had some un-diagnosed blood disorder. That wasn’t fair. I felt alone. But, at least she didn’t have cancer…..

I finally started to get pissed. Every time someone said that to me, I got pissed. I felt like people were saying to me “you should be happy and have no reason to be upset….after all, it’s not cancer.”

Damn it. I wasn’t allowing myself to be upset because she wasn’t dying, but deep down I was breaking down. I cried when nobody was watching. I took extra long showers sobbing. I cried on my way to the labs, cried on the way home. Cry now just thinking about it. Why was I not allowed to be sad that my baby was still sick, she still had to have tests, procedures, labs, blood transfusions. She was not dying, she didn’t have cancer, but she was sick.

I was a nurse. I had seen kids sick, really really sick. I had held kids as they took their last breath. I had watched parents sob holding onto one another as their baby just was not getting better. I had thick skin. I did not want people to see me break down over my “not so sick baby”. It sucked.

Years later, I can report we’ve made it thru with Abigail. She still has a baseline low ANC (neutrophil) count, but has been remarkably healthy for her (almost) 5 years of life. Yes, I’m Crazy-Anal on germs, I freak out and don’t go around sick people and get offended – personally if you don’t get your flu shot….but my girl is healthy.

I suffered from severe postpartum  depression during this time. (A blog for another day) This whole “illness” with Abigail was hard. But, what was harder is I felt I had to put on a smile and not be upset because “at least she didn’t have cancer”. Hiding my emotions and feelings literally broke me. What it did do also, was make me a more compassionate person and a better nurse. Before this, I would make light of those kids who came in and didn’t meet our criteria for “really sick”. I would complain and join in the session of crap talking to the other nurses about how high maintenance these moms and dads were. After all, their kid only had a surgery for an appendectomy. Come on.

I then became a mom of a “sick” kid. Through Abigail, I learned that when it is your child, even the cold or tummy bug sucks. Every stick I just would wish that it would be the last time. I would look years later at her little heals with little scars from her labs and still hurt that she hurt.

We are moms. Our kids may not have bald heads from chemo or have tubes to help them breath, and don’t get me wrong, I thank God daily for this…..but we hurt when our kids hurt.  We would all much rather take the place of our child for any pain whether it be a bully on the bus, the flu, lab draws or chemo. We would take the place of our babies in a heart beat.

I feel like this blog is kinda random with not much of a point other than to finally admit, I was pissed. I was pissed she wasn’t “well”. I was pissed that I had to sit in the waiting room with bald babies/kids/teens with caths infusing chemo. I was pissed that I couldn’t be sad for my own daughter because she wasn’t that sick. I was pissed I felt alone. I was pissed that this would make me fear a sneeze around my kids forever. I was pissed because I couldn’t even tell anyone how sad or pissed I was because that would make me weak.

Fast forwarding to present….Abigail was never a sleeper. She was scared to be alone. She still is. She began having night terrors before she was even one. They were terrifying to her and to us. I know we as health care providers say babies don’t remember, but they get older and she to this day is scared to step foot in a doctors office and always talks about “when her blood was sick”. It makes me sad.

Sometimes, I feel like I broke her. I feel that I did or didn’t do something to make her sick. I blame myself daily. And as stupid as it is, when her behavior is really bad in really bad days and her anxiety is at an all time high – I blame myself. I wonder if all those tests, procedures, sticks and MD visits did it.

As a new mom I knew nothing. Hell, three kids later I still feel like I know nothing. But sometimes I feel that I was so overwhelmed with being tired, breastfeeding, my marriage changing, countless doctors apts, fear of being a mommy and fear of the unknown of my sick daughter – I have realized I never really bonded with her as an infant. I loved her, oh my gosh did I love her…..but for some reason I just didn’t bond. To this day I feel guilty.

Abigail turns 5 this month. As I write this, it is 3am and I’m wishing I could turn back time. I’m wishing I got to spend a few extra moments not consumed with her illness, my depression, my exhaustion and just held her until our hearts were in sync. I blinked….and I can’t turn back that time.

Truth: I sometimes get REALLY pissed and judgmental about other moms who “boo-hoo” about a skinned knee or shots, or something little. I think of how my babies have had more sticks than most will have in a lifetime. I’m a jerk. These are your babies and the severity (or lack there of) in my eyes doesn’t make it any less hurtful or hard on your and on you as the mom. It sucks. All of it. And even though “they don’t have cancer”….we all have the right to have our fear, anxiety and pain for our babies validated.