No One Knows

I’m so frustrated but have no one to talk too. Yes of course someone will listen and tell me they understand but they really don’t. No one I know knows what it feels like to have a really sick child. To not know their child’s future, expectations, or life expectancy. No one knows what it feels like to be told twice your child isn’t going to survives. No one knows what’s it’s like to have a child who doesn’t know how to eat by mouth because eating, latching was a work out for them. Having a child too weak to eat. No one knows how to place a Gtube, shit most don’t even know what a Gtube is. No one knows what it’s like to spend months and months in a hospital with their firstborn. To only be able to spend a few seconds or minutes with them after hours of labor. Some heart moms don’t even get a chance to hold their babies until a few weeks or months later. We don’t know if our babies will need open heart surgery soon as we pop them out, at a few days old, or if they will even survive the surgery. The first surgery, out of three is the most complex. Plenty of babies don’t make it or suffer serious conditions such as silent strokes, or seizures. No one knows what’s it’s like to see your baby in distress, crying but you can’t hear them or comfort them because they have a breathing tube down their throats. Some heart babies end up having a paralyzed vocal cord(s) due to surgery, which takes months to a year to recover. No one knows what’s it like to have a delayed child due to 157 days in the hospital, 2 open heart surgeries, a missing Vermis, and a genetic disorder. To have a child that has so many things working against her. To be told your child may never walk, or talk, and might be autistic. No one knows what it really feels like. No one actually really understands. No one knows what it’s like to raise a special needs child. To know what they want, and need by facial expressions, body language, and sounds because they are non-verbal. No one knows the time, patience, knowledge, and faith it takes to raise my child. No one knows the pain I feel. The worry I feel. And the anger I feel at times. No one knows how I don’t think about me, or have time to cry or complain because it’s just no time for that. How I barely had time to just sit and cry! I just do it. No one knows how much I dislike when someone says “ sorry this or that “. My child is nothing to be sorry about. Don’t feel bad for me because I don’t feel bad for myself. My daughter has survived both surgeries, doctor’s expectations, heart failure, and is kicking Jacobsen Syndrome ass. This is MY normal. She is perfect for me. Being her mother makes me special, in every kind of way! And God knew exactly what he was doing when he made her my daughter. My daughter has shown me the definition of unconditional love and gave me my purpose in life. She taught me what’s worth it and what’s not, and has shown me how strong I really am.

But as a heart mom, I get tired. Frustrated. I still worry and sometimes need to cry.

Rant over.

The Last Bit of Hope

April 3rd, 2019 11:20a.m

The technician is having a hard time getting pictures, again. After trying for so long, the cardiologist said he had enough pictures, so we can wrap it up. We were escorted two doors down to this small room, full of books, a round  table, chairs, and one window. The technician told us to  “ Have a seat, the cardiologist will come back and talk to you guys “. At this point I’m praying out loud, talking to God, asking him to spare my baby, us. This time too, felt like a long wait but I’m sure it wasn’t . A tall, handsome, middle aged man, with salt and pepper hair walks in and introduces himself as Dr.Shaw, the cardiologist. He is holding papers in his hands with the back facing us. Sitting directly across from us, he looks me directly in my eyes, and confirms she definitely has HLHS. I was devastated. He turned over his papers which revealed notes, a diagnosed, and images of hearts . Each heart photo has a title with hand writing all over it. He starts to explain how the heart photos demonstrate the three different open heart surgeries she will need to have a chance at life. 

He Explained :

The three surgeries are the Norwood, Glenn, and Fontan. Hypoplastic left heart syndrome (HLHS) is a severe heart defect. A baby with HLHS, left side of the heart does not form correctly. In a “ Normal “ heart, the left side job is to pump oxygenated blood into the aorta, and the large artery to the rest of the body. Which means the mitral valve, and aortic valve, are too small or completely closed. Although the left chamber walls are only about half of an inch thick, the left ventricle is the largest, and strongest chamber. Unfortunately, because the left ventricle is severely underdeveloped, it’s not capable of pumping blood to the rest of the body. The right side of the heart now has to pump blood to the lungs and throughout the entire body. In result, the right ventricle has mixed red, and blue blood. The survival rate is better now, compared to 30 years ago. 

I didn’t say anything, I couldn’t. I’m in shock, hurt, confused, angry, and concerned. It feels like my heart got ripped out of my chest. I just grabbed my man hand, and together we cried. Dr.Shaw then stopped to tell us that it’s comfort care, if that was the path we wanted to take and they would support us no matter what. We put that to an end, quick . Dr.Shaw then goes on to say “ Well if you two are ready to fight, we are here to fight with you. It is going to be a lot of work, nothing about this is going to be easy, but it will all be worth it. Our team is going to do our best to make sure she gets the best care. I know this is hard and a lot to hear, being a father myself I can’t imagine hearing these things about my children

I can’t sleep, or eat. I go to sleep crying, and wake up crying. If I don’t feel her move at least once in an hour I start to panic. Starting next week I have to go to the prenatal clinic every Monday, and Thursday until I get induced on the 29th. They will measure the fluid in her sac, watch the flow in the umbilical cord, give a non-stress, weigh, and measure the baby. I was told that the first surgery, Norwood, can take place from the time she enters the world, up to two weeks old. I won’t know until she’s here, and they see how she does on her own, which means I can push her out and she can be taken right from me and go straight into surgery. I can’t help this feeling I have of anger, I was angry with God. All I can do is ask why me? Why my first born? Have I already gone through enough? Everything is up in the air; how long will she be in the hospital, when she will have her first surgery, will I be able to hold her, will she survive? I joined a HLHS support group online, but nothing can prepare me for what’s coming. 

April 29,2019 9:30a.m

Today is the day. I get induced at 2p.m. I’m so anxious, I can’t wait to see her sweet face, then again, I’m so scared. No one can tell me what’s going to happen once she’s out but they will have to take her from me. 

To Be Continued… 

Confirmation : Part 3

I could give birth any day now, so it was urgent to see a high risk doctor for confirmation. I received a phone call later that day with two follow up appointments. I am to see the high risk doctor in two days at 2:30pm, then a cardiologist appointment the following day.

April 2nd, 2019 2:40pm 

 I’m lying here on the table getting more sonogram pictures taken, and all I can do is pray to God that the last doctor at my prenatal appointment was wrong. I prayed for my baby to be healthy, and to not be high risk. Bittersweetly, we were able to see her beautiful face twice in one week. The sonographer’s name was Angel, ironically. She was having a hard time getting pictures of her heart because of how Serenity was angled. She’s now full term and her body is covered with fat and muscles. These defects are looked for between 18-22 weeks because it’s easy to see through a baby body due to the fact they have no fat on them. Yeah I know, how the fuck they miss it? Anyway, the technicians aren’t allowed to tell you what they see, or think just in case they’re wrong; so for the entire 40 minutes I had to restrain from asking her questions about the condition they suspected her to have. It’s finally over. The nurse escorted us to the doctor’s office to wait for the doctor to read the results, and come tell us what he saw. I’m looking around and reading all the pamphlets on the walls about high risk pregnancy, drugs, support groups, etc. My heart is racing, stomach turning, and hands sweating, this anticipation is killing me. After waiting about 10 minutes which felt like 30 minutes, he finally is here. He is definitely my senior by a few decades, with glasses, and salt and pepper hair, who goes by the name Dr.Silver. He was the doctor who trained the head doctor, and owner of my prenatal clinic. He had several clinics throughout upstate, and was the one families and mothers travel to see. He’s really nice, and comforting. He confirmed that it was in fact Hypoplastic Left Heart Syndrome. He explained that Serenity left ventricle was completely underdeveloped, and she was going to need open heart surgery to survive. He continued to explain how she was really small weighing 4 pounds and 12 ounces at 36w6d. In result of her low weight I will be induced in two weeks. He gave us reassurance that our baby had a fighting change. He explained that he has been in this practice since 1988, and have seen so many babies survive this heart condition, as well as others. He recalled technology from the 80s being completely different from today’s technology, which play a big part in defeating deadly diseases, and defects. Babies are remarkable, and strong, he stated. He gave me my first piece of hope. We still have another appointment tomorrow at the Pediatric Cardiologist Clinic.

April 3rd, 2019 11:00am

We walked inside the elevator and pressed the 9th floor. I was already a wreck. Full of pain, anxiety, and fear. I wasn’t ready for this. I wasn’t for this, but I had to do it . My man is a strong believer of God, faith was never shot. He always held on to hope, but for me I was drowning in my emotions. Yet I still held on to the little bit of hope that Dr.Silver gave me yesterday. I still couldn’t stop shaking. After waiting a few minutes we got called, it was time for another sonogram. This was it.

To Be Continued …

April Fools 2019 : Part 2

“ March 30th, 2019 “

I turned 36 weeks today, full term. I’m excited, I want to meet my baby so bad. The anticipation was killing me. She has grown so much over these past two weeks. Most people didn’t recognize I was pregnant until I was about 5 months pregnant. Now look at me, I’m a hippo, need help getting up, have to do the scoop to the end of the couch, and for me to roll over takes 3 minutes; I’m over it. It’s time for her to come out, and working at Dunkin’ my feet and ankles are swollen often, but I enjoy working. I love making my own money. I have an appointment tomorrow, I’m exhilarated I’m going to see her face one last time before she comes out! Hopefully she let me see her lips for the second time, and move that arm she always has covering them. She’s stubborn, like me. 

The next day.. 2:05 p.m.

In a few minutes I will be seeing her little face. My appointment was at 2 but for some reason no matter how early we start getting ready we are always late. They called us to the back, checked my weight, and vitals signs. Next was the sonogram room. She has grown so much, she is sleeping as usual with that arm over her lips, as usual, but we were able to get her to move for a slip second. The sonographer was able to rewind and fast-forward what the wand revealed, so I can see when she moved her arm, put it back, opened her mouth, and made faces. Every movement. I thought she looked like me in the last sonogram but this session put the cherry on top. She had fat cheeks, with my button nose, full lips, and the doctors always spoke on how much hair she had. She was perfect. I recalled the technician asking me to move certain ways , and looking concerned but I let it go over my head. I was in my own world. My man went back to the waiting room to wait for me, while I waited for the doctor to come and discuss everything with me. I can already tell by the look on her face it wasn’t good. She started off telling me the different parts of the heart and how it’s supposed to form. “ When the heart forms it has two ventricles, a left and a right. We don’t see her left ventricle, we believe she has a serious heart defect named “ Hypoplastic Left Heart Syndrome “, in which the left ventricle does not develop correctly. She will have to undergo open heart surgery in order to survive. I couldn’t hold anymore. I broke into pieces, they encouraged me to not hear this alone so my man came back to the room I was in. Despite my tears, my face must have read fear, and pain because his reaction was to instantly comfort me. I can tell by his face I have made him deeply concerned. The doctor proceeded to tell him everything she had told me. The doctor told us “ We will be setting up appointments for you to get confirmation. We had to go see a high risk doctor, and cardiologist for more images to be taken. My mind is just racing, how did this happen? Did I do anything wrong? Is my baby going to die? Why ? But I still had some type of hope they were wrong. I remember leaving and the first person I called was my oldest sister Ava, we had become close over the last 3 years, this was her child as much as she was mine. My voice was cracking because I was trying to not cry.

Me : “Serenity could have a heart issue and need open heart surgery.”

Ava : “ Is this a joke? “

Me :  “ What? ‘ . I was confused as to why she will ask me that.

Ave : “ Bitch are you playing with me ? It’s April Fools “. 

I started to laugh and said “ No this is not a joke, I wouldn’t play like that.”

 I totally forgot today was April Fools, oh shit. 

Facing Reality : Part 1

One of the best days in my life was when I realized I can conceive. That blue cross, and single line revealed themselves less than 60 seconds, so there was no need to second guess the results but, I still took the quickest shower and walked to Rite Aid to buy 3 more tests. I was full of joy, and excitement despite one’s feelings not being neutral. I wanted to create an offspring out of love. I found the love of my life; he was the sweetest man I ever met, the only man who never called me out my name, and spoiled me, besides my father. Unlike any other man I met, a machine pumped his heart. I felt like no matter what I would always want something to remind me of him, if God called him home too soon. I knew from that point on if God gave me the opportunity to pick my offspring’s other creature, it would be him. I had too much anxiety, and not enough faith but, against all odds I decided this is what I wanted. I knew my freedom, impulse decisions, school, and my young adult life that I once lived spontaneously will now have restrictions. But I didn’t care. I had a whole plan, I prayed for you. I was going to be someone’s mother. As time went on things weren’t going as I expected, my reality wasn’t what I anticipated. Once again my depression won, and when he wins, I lose the most important parts of me. Mentally, emotionally I was already drained so it didn’t take much for him to control me. He lived up to his name, Major Depression. He told me when I will eat, sleep, get out of bed, do the things I love, or who I was going to communicate with, if anyone at all. The thought of you being raised in a broken home killed me internally, slowly. The person I made a sacrifice for, no longer loved me, everything I thought was, wasn’t. This single mother shit, wasn’t what i was cut for. I wasn’t going to be a part of that 80% single mother statistic. That’s NOT what i signed up for, if i would have known I was gonna be in this spot I would have avoided the whole situation. I can still avoid the entire situation, I’m not even 15 weeks yet.. I still have time to save myself, and my unborn from the sequel of being raised in a broken home. Failed attempted. Get a phone call from my momma, she says, “ No matter your reason behind creating your own offspring you’re not having this baby for anyone else but yourself. When your child is born she will change your life in so many ways, she will be the best thing that ever happens to you. I know this isn’t what you planned but that doesn’t mean you will fail. Look at me, I raised three children on my own, and, you, and your sister came out just fine to me; It’s going to be okay.” I woke up, that’s the day I gained acceptance. I realized how much God has blessed me and how much I’ve been ungrateful. I couldn’t see all that I had in front of me, I just saw what I didn’t have. I came to the conclusion that not loving myself more than I loved another is what got me here. I allowed someone else’s view of me to diminish how I saw myself, although I knew how hard I fought to be better, and all the progress I had made. I realized I no longer loved myself, knew my worth, and lost my pride. I was insecure, resentful, and hurt. It was time to get my shit together, not for me, but for her. It’s no way I could shape her into being a strong, self loved, self motivated, genuine, secured, smart woman if i didn’t learn to be that person myself. I was going to be the best me i can be, so she can be the best, she can be . 

The Devil You Created

She says I’m disrespectful, and she can’t stand me . She tells me to shut up and get out her face. She claims I don’t know how to talk to people, and it’s not what I said but how I said it. Ha, isn’t that funny, because neither does she know I’m the devil she created . She can’t see how her life impacted mines, she doesn’t realize that all her trauma became mine. That every little thing that she exposed me too fucked up my mind. Her toxic coping skills showed me that’s how you heal . She must not know that not loving herself made her lack in many things. She couldn’t teach me to love myself, and see that was the stem to my problem. I looked for love in all the wrong places, and ended up being in unhealthy, toxic relationships as a clarification. Cutting, sex, and drugs started to feel so good because it helped me block out all of those feelings I buried so deep inside of me. Telling my inner child fuck all that antidepressants and therapy, this is all we need! But that was slowly killing us emotionally, and mentally. I turned into everyone who hurt me; I began treating people in the same manner as they did me. I just wanted you to listen to me, and hear my cries but you were so stuck in your own world and all those guys. Allowing them to use you in every way possible, they raped your mind. They killed the little bit left of you, you had inside. You couldn’t see how much I needed you, you just saw who I became, not realizing this is the devil you made. I begged, and pleaded with you in the midst of finding myself  to give me another chance, but instead I was rejected and neglected once again. I was told to stop trying because you didn’t want to have anything to do with me, and that shit bugged me out, like how could that be? As a child I saw you forgive the unforgivable from people who didn’t share no blood, but you literally gave me life but wasn’t willing to forgive who I was . You say I did, and said things but refuse to talk about you; What about that time you said I wasn’t your child anymore, and I was dead to you. Telling me everything is my fault and I’m going to be the reason you die . You Made me feel like the black sheep and I wanted to die . It took me years to see that healing starts with me. I had to take time to forgive myself, and see myself with a new pair of eyes. But now I hope you see that the devil you created is no longer alive.

I’m Not Stupid : I’m Battered

I’ve been called stupid by almost everyone. My family, friends, co-workers, and him. I have to walk on eggshells speaking to others because I fear being judged, and misunderstood. Even though it’s something I’m used to doing at home, it’s something I wish I didn’t have to do outside of it. So many people ask me why I stay, but I hesitate to say because, “ I love him “ and he was just mad because it’s considered an excuse. I’ll be stupid. See, no one seems to take a step back and look at it from my eyes, in my shoes. I’m just stupid. When I say I love him it’s not an excuse, I do, when I say he was just mad, it’s not to justify what he did because it’s the truth. It only happens when he’s mad, because when things are good, they’re great. When he calms down, and realizes what he has done he apologizes, then goes and gets me my favorite flowers. He uses those same lips to make me feel loved, after they have made me feel so low. His hands no longer become a reminder of why I have to wear long sleeves in the summer, but why I fell in love with him in the first place. He has tried to change and did good for two weeks then I got him mad. If I was just a better woman things would be better between us. If I would of just respected him and shut up when he asked me, we wouldn’t have been in that situation. I can’t tell you how many arguments I have had with people who supposedly love me ! But judge me . Call me stupid instead of trying to understand me . They say I’m taking up for him, and choosing him over myself, and everyone else but they just don’t understand. Those other girls don’t mean anything to him, he always comes back home to me. He’s not like this all the time, it’s always more good than bad, he always says sorry, and promises me that it won’t ever happen again! It’s not mental abuse , nor is it emotional.. everyone’s just jealous. I’m not stupid, I’m in love.  

“From a battered woman mind”