We're on a Black List.

This weekend has been the hardest we’ve had so far. I am watching Annabelle spiral away from me faster than ever. She is sleeping too much for my comfort. When she is awake she is irritable and emotional. She isn’t herself; she is not my Annabelle Grace.

My heart is shattered from Johns Hopkins Wednesday. The doctors I spoke with, the genetic counselors, the concern in their voice and the plea for us not to move Annabelle from their hospital all led me to trust their desire to help my daughter. I knew the drive to Baltimore, MD would be promising, I knew deep down we were literally on the cusp to answers. I was so happy for the very first time in so long. I was anxious for the news. I was prepared to hear the good AND the bad.

Annabelle and I had a long talk on the way to the hospital and we were both ready. This was the turning page in our journey – we didn’t know it was the last page for hope in the medical world. We didn’t know that day would close the book on us. 

My grandmother went with me to Johns Hopkins. The drive is really difficult with Annabelle sometimes. When her and I get in the car and she see’s me packing all our usual things for hospital visits, she immediately gets upset. That turns into a full car ride of anxiety for the both of us. And a trip out of state alone with her isn’t fair to either of our sanity. The extra set of hands and support is so helpful. When doctors are speaking, or I am checking in with registration, it’s nice to not have to handle Annabelle and allow someone else to play with her while I deal with the important things.

I keep considering whether or not to go into detail about what happened in that room at Johns Hopkins, but the more I reflect that day – the more heartbroken I sink, bitter I get and depressed I fall. We were supposed to be there to begin more testing, narrow down which type of genetic disease is going on, discuss possible treatment plans, talk about the future, iron out genetics. 

What happened instead was a team of three people entered our room, two of them did not make eye contact with me, only one doctor spoke. She asked me point blank, “Mom, what do you think is wrong with Annabelle right now. Look at her, what is the problem you are seeing in this room?” At the time, Annabelle was fine, she was antsy and misbehaving because she was in a room of doctors, she was yelling “Bye Bye!! Mommy! Bye Bye!!” because she knows what is next. She was full of energy because she was running on full adrenaline to get the hell out of there! I responded, “Well.. on the surface nothing appears wrong with her. That’s the hardest part of this. But all day she has slept. She tires too easily. Her pain is so erratic.” She asked me where all this was documented; my curiosity and guard started to rise with the conversation.. I told myself in the back of my mind, ‘this can’t be true.. she isn’t going to treat me the same way as MCV is she? There is no way…’ Our conversation quickly began to turn downhill… I asked told her, “I am sorry. Are we discussing the same Annabelle Bishop? Because this is not the conversation I was prepared to have with you today. I am not exactly following what is going on here. Can we discuss her bloodwork again? It is all very abnormal, that was a great concern just yesterday, should we talk about that please?” I wanted to reel the doctor back to the facts, the concrete reasons why we were in the office, all the black and white information we have in front of us. She responded, “Yes, Annabelle’s bloodwork is abnormal. But that was likely because it was a bad draw when you were in the emergency room. The bloodwork was abnormal but at this time I do not see any reason as to why we should repeat it.” I was shocked. I asked her, “Ok, documented problem #587466, Vaginal Bleeding in the emergency room. What is a plausible explanation for that?” This was the moment in which every fear, concern, and question I had came to light, the doctor lashed at me with great irritation, “THAT Mrs. Bishop! Was explained to you in the emergency room at MCV. It was a ONE time occurrence and hasn’t repeated itself. There was NO proof there were concerns about a problem from the bleeding.” My jaw dropped. I knew at that time MCV had contacted Johns Hopkins. I knew the visit was over. I picked up the business card that I was handed 5 minutes prior from this doctor and read the name, her name was NOT the doctor I was scheduled to see today. I read the names of the two Genetic Counselors in the room with me, neither of them were people I had spoken to over the phone or were scheduled to see. The visit was over. We were done. I dropped my head and didn’t speak another word. The doctor wrapped up the rest of the conversation, “Mrs. Bishop, I think you have done enough. You’ve done everything you can with this child and ruled out anything serious from the series of tests you have put her thru. You need to stop Mrs. Bishop, do you understand me? Annabelle needs a break, you need a break. You need to go home and just give your family some time. You need to stop putting her thru this.” I looked up with a furious face and tears in my eyes and a shaking voice, “My baby is sick. You don’t get it.” The doctor looked at me and turned around and signed a piece of paper and asked me to also sign, “I want you to understand that I have ZERO concerns for any type of Genetic Condition. Zero. There is no reason to schedule, follow up or pursue any further here at Johns Hopkins unless there is a specific, Physician referred issue that you would like our second opinion on. We have no reason to need to see Annabelle as a parent referred case any further, do you understand that?” I signed the papers and asked for a copy. She told me they would mail myself and our pediatrician and also our GI a copy of the days conversation that they see no concerns with Annabelle. My grandmother wore a horrified look on her face. She tried to initiate more questions and I stopped her mid-sentence, there was no use. I packed our things, didn’t make eye contact and did not thank anyone for their concern, time or help. I couldn’t speak words, I just needed to cradle my baby and get the hell out of the hospital. I wanted to run as fast as I could.. I wanted to break down and cry.. I wanted to scream.. yell.. hit a wall and PLEAD for someone to stop doing this to my family. I carried my baby girl and walked as fast as I could to the car. 

Traffic was hell. I mean hell. The day was non-stop drizzle rain, which means no one can drive and everyone causes accidents. The moment the traffic stopped, I saw a sign for the HOV, without thinking, I ripped the car onto the HOV ramp and bypassed the traffic. I wanted to call AK, I wanted to post an update, I wanted to text friends but I couldn’t.. I was in complete shock. Annabelle kept crying in the backseat and I kept yelling at her to stop. I had to merge off the HOV eventually and get onto i95. I fought my way from the far right lane to the far left and immediately found the next HOV lane, I had no idea where it would take me, but it was moving and 95 wasn’t so I took it. It was 4:00pm and I was fighting DC traffic in the rain. That combination, I am certain is what hell is made of. I knew I needed to stop the car, we needed to break from the traffic, Annabelle needed to be changed, we needed to eat and I needed to breathe. I asked siri to direct me to Potomac Mills and SOMEHOW, God paved a road with zero traffic straight from the HOV lane, to the parking lot of Potomac Mills. I didn’t even know it was possible but it was a damn miracle. My grandmother didn’t know what to say. I knew she wanted to break down and cry. I knew she wanted to have a conversation but together we were angry, speechless and heartbroken. She reminded me she was ‘there’ and she loved me by tapping my right leg from the passenger seat, I held her hand and looked at her and smiled.. we both looked back out the window. It was a silent drive flying around traffic. But the words just weren’t there. We had plenty questions but were both too heartbroken to discuss it. I parked at Potomac Mills and asked Annabelle if she wanted to go inside the Disney Store and pick out something fun for her and sissy. We walked laps around the mall for a short while. I called AK and tried to bring him up to speed, which consisted mostly of, “were on a black list – our child isn’t getting help anywhere and I don’t know what to do. we need to think creatively or start picking out a casket AK. Pray like hell for our family, I am so scared.” Around that time it hit me that I was going to be sick.

Annabelle was playing in the disease-infested kids play area of the mall.. I didn’t care, she was smiling and I didn’t have enough energy to convince her not to play and have fun, but sit in a boring stroller for two hours before sitting in a boring carseat for another 4. I looked around searching for my grandmother that went shopping in a nearby store. I needed her to come watch Annabelle so I could go sit.. or get something to eat, I hadn’t eaten all day again and it was dinner time. I finally saw her and stayed on the phone with AK as I made my way to a smoothie stand. I remember ordering a smoothie and cutting off the poor clerk, “Huh? Banana? I don’t care. Im sorry.. anything you have – your special, I just need something please.” I couldn’t see straight and was nauseated beyond belief. Spots were swirling around everywhere and I just knew I was going to embarrassingly pass out in the middle of this darn mall and scare the bejezus out of my grandmother. Fortunately that dramatic scene didn’t happen and after sitting for a while and drinking the smoothie, I started to feel better and my nasty mood started to wear off. We gathered Annabelle and made our way around the mall a little more before deciding to get dinner and hit the road.

Annabelle and I arrived home late that evening, shortly after midnight I believe. She was exhausted and went to bed immediately. The day was devastating. AK knew the moment I walked in the door that I couldn’t talk and just needed to go to sleep. The day was so long, driving wore me out in the pouring rain, Annabelle needed to be changed thru 4 complete outfits and arrived home naked in only a diaper because she either vomited or her tube drained all her tummy contents on her clothes every other time. My entire car smelled of stomach bile and vomit. I had two full bags of soiled clothes from the day. When I walked thru the door, I asked AK to clean out the car from everything as I put our little girl to bed. I gave her the biggest kisses. I thanked her for being such a blessing in our lives and for never giving up. I am only the mom in this situation, I can only stand over her and fight for her, but Annabelle is living the true hell. I am so grateful she doesn’t know what has happened in the world around her. I am so grateful that her innocence allows her to blow doctors kisses and wave bye-bye when we leave. My perception of the medical world is ruined forever, hers is beautifully innocent.

That was Johns Hopkins, fast forward to the last couple days. Annabelle is sleeping more than ever. She is refusing to take feeds orally which requires us to send them as a bolus. Because she continues to vomit, she isn’t able to balance her feeds very well. I have been keeping her on a slower feed rate, more continuous feed and longer stretch of boluses. She is sleeping constantly which makes this process easier in a lot of ways. AK and I have spent the weekend locked inside our home, it’s raining outside and I have no desire to change out of my sweatpants. I don’t want to shower more than necessary and I only brush my teeth for my own personal comfort so I can stand to be around myself. We’ve been cleaning a lot, reorganizing things which always makes me happy and cooking. Our girls are running around either naked or in jammies and have enjoyed the much needed relax family time.