Moving On...

I just want to be ok. I want to be happy. Is this possible? Should I just accept that I will always have a hole in my heart? I’ve been thinking a lot about “moving on” lately. When I lost you Gabe, a big part of me wanted to go with you. There is a song by P!NK called "Beam Me Up". This song conveys exactly how I feel lately. I just want to hold you even if just for a moment. Everyone around me seems to have moved past the tragedy that I’ll call your death. Everyone around me wants me to stop “dwelling” on it also. A mother is so connected to her child that she even feels it after death of one. I constantly tell myself that I will be ok, even though I won’t. I tell myself that I need to be stronger and realize that the time I did have with you was a gift. Which I do, I just am greedy and want/ need more time. None of the positive thinking seems to help me. It almost makes things worse, like I’m trying to correct a feeling. Everyone says that I am negative and it is going to send me into depression. I honestly don’t think I am being negative. I am not thinking of the ‘why me’ or the ‘I should have’ thoughts. I really am just sad without you. I hate that you aren’t here. I will never forget about you and there will never be a day that goes by that I don’t long for you or think about how you would be if you were here with us. I always think about what you would be doing at this age. One year and 3 months, you would be making us laugh with your new words, walking around all cute, eating all kinds of new foods, trying to keep up with your brother on his “motorcycle”. That’s my dream. My wish. I miss you Gabe. I love you. I read a story in the news about a famine going on in another part of the world. A woman was walking with her children across a long distance to try to find food, water, and opportunity. One of her children was sick and she didn’t have any way to care for him or enough food to feed them all. She had to leave behind this sick child so that she could take care of the rest of them. She said she stayed with him for a whole day and held him and told him how much she loves him and that he needs to be brave and strong. Maybe someone will come to help and he can find her one day. The person who wrote the article stated that the mother was crying while telling them of the story and asking them to look that way for her child if they had the means. The story touched me and I feel so awful for her. This doesn’t exactly relate to me, but I do share an emotion with it. I feel like I left something back in that hospital. I can’t stop thinking about the last time I held you and dressed you. I can’t get the funeral out of my head. I cannot get the idea of the cremation out of my head. I hate that you had to go through that, I wish it was me instead of you. Parents are not supposed to “move on” without their kids. It is not right; there are no words for a parent who has lost a child. It is simply painful.

We do want more kids. Not because we lost you Gabe, but because we had you. I was so nervous to have more than one kid when I was pregnant with you. But you reminded me that life is precious and that amazing feeling when bringing a life into the world. Jax would love brothers or sisters. I could do it, I am sure now. It’s just not as easy as saying oh I want to have a baby now. I hate that question “so are you guys going to try to have any more kids? I'm sure it won't happen again.” Trying to get pregnant is so stressful. After realizing that stress makes things 100% harder, we decided to not try anymore. If it happens, it happens. But every month if I’m late I seem to get the same anxiety about it even though I tell myself not to worry about it. I told someone I just want to be ok and that I want to not want more children. I want to be able to accept it if I am not able to have any more. This person and a few others have told me that this is negative thinking. I am trying to get my disappointment out of the way before it happens. That the odds are good since I had two children by the time I was 25. I partially agree with that. But I also think it is my only road to happiness. It is me deciding to focus myself completely on what is in front of me and things I have control over such as Jax and a career! I am trying to be happy with what I have instead of wanting something I don’t know that I can have or may take any number of years to get to. And if you want to talk about odds, let’s talk about the odds of Gabriel having Trisomy 13. I am 25 my husband is also young, we are pretty healthy, and my strong trisomy baby lived inside of me until 32 weeks of pregnancy. The odds for that are pretty slim, yet it happened. So odds… Fuck odds. Anything is possible. Is another baby possible? Of course but is there also a chance that it doesn’t happen? Yes. So bottom line, I need to get to a place where I am ok with just Jax being here with me. He is amazing and I should be so happy with him. I am I think I just want to give him the world. Wouldn’t he be great with a sibling? He would love it J.  

SO moving on? It’s a bad phrase for a parent who has lost a child. I will never move on. He is always with me no matter what; he is always on my mind and in my heart. Keep living is a better phrase. People who think that I am dwelling on not having him here? You don’t understand, back off. I am ok, I am sad and part of me will always be sad. THAT’S OK. IT’S OK TO BE SAD. I’m sorry to say that this is a new me. I have been through a battle and I am different. The new me is no longer naïve or blindly happy. The new me can be happy sometimes but she also knows that she will always be a little sad and angry. I am going to keep living for you Gabriel. I hope to see you one day. There will be no greater joy than to have you in my arms again.

“Do not judge the bereaved mother.
She comes in many forms.
She is breathing, but she is dying.
She may look young, but inside she has become ancient.
She smiles, but her heart sobs.
She walks, she talks, she cooks, she cleans, she works, she IS,
but she IS NOT, all at once.
She is here, but part of her is elsewhere for eternity.”

Where Am I?

Baby Gabe,

It’s about to be your birthday and I wish you were here to taste your first cake. Well, let’s be honest, you probably would have had cake before now in this house! Becky sent me a text with a link to a blog tonight. She is seriously an angel in our lives. I’m sure you have been watching me break down over the past months. Your daddy finally sat me down to tell me that I am falling into a hole. He is amazing and I thank him for that even though I haven’t shown that gratitude. I needed to read this blog, I needed to read the words and let out my tears. I haven’t been able to cry because I need to say how I feel out loud. Or write it in your blog, that I have not written in since I shared your story. I’m so sorry. The blog Becky told me about is written by a mom who has lost her little boy to cancer, it’s awful (http://rockstarronan.com). It's heart wrenching but amazing, I love this family so much and I don't know them. I just spent the whole night reading her entire blog from beginning to end. My eyes are swollen. I have struggled so much with how to express how I feel and this woman, this mom, somehow puts all the raw emotion and thoughts onto her blog perfectly. I related to her feelings of anger, guilt, sadness, numbness, determination, shock, and weakness all too well. I miss you so much. Jax misses you so much. Daddy does too. I feel like I held you just last week, and I can still feel your spirit and hear your sweet cry. I was at a store a few weeks ago and heard a baby cry, this has happened many times but never like this. This child sounded exactly like you, the same voice, the same cry, the same sound. I wanted to walk up to her and ask her why she took my baby, as if the baby were you. He had brown hair and brown eyes. I think the woman probably thought I was mentally ill because I whipped around so quickly and couldn’t take my eyes off of that baby. I don’t know what to do Gabe. It just hurts, it sucks and I don’t want to be apart from you. I have never been so sad in all of my life. I have an ache in my heart and an ache in my arms. I love you so much I can’t transcribe it with words. I don’t want to be sad anymore but I don’t know how to move on. Can anyone just “move on” after someone so close to them dies? Can a mother “move on” from a child’s death? No. It’s not possible, the love a parent feels for their children is unconditional and eternal. I guess what I’m saying is that I want this emotion to subside for just one day. I want to be truly happy and content with life again. I have the best husband, the best son, and I am forever grateful and lucky to have them. But the feeling doesn’t subside; it doesn’t leave me for even one day. My goal now is going to be to get to a place, where I can be joyful again. I still need to be productive and a good part of daddy and Jax’s lives. I need to be strong for them. So how do I go about this? Some people find strength in getting awareness out about the cause of a loved one’s death. Well, my beautiful Gabriel, how do you make people aware that there is a very very slight UNFAIR chance that your unborn child could have an extra chromosome #13 in every cell in their body. And this disease, condition whatever you want to call it, is “incompatible with life”. That there is no chance their child will survive. There is no cure for chromosome abnormalities. Yes, I can tell people about trisomy, maybe work with Down syndrome charities. Why? Is this an awful thing to feel? Why should I make people aware of trisomy? I suppose I could fight against abortion? I was advised to have an abortion by several highly educated professionals and I decided against it. It was not even considered. I do not have the right to take away a life. That I could never, I already loved you too much. Maybe I could be a research doctor and figure out how trisomy actually happens so that other people can avoid it. Support group. Support group has been the best support Daddy and I have gotten after losing you. Maybe I can be a loss doula, or help with support group. Thank you Gabe, just writing this down has helped me out. I will listen to my heart and do what I think you would want me to do.

I am sorry this post is so negative. I am so pissed off. It’s unfair, it’s unfair, it’s unfair, it’s unfair. The best possible place for you to be is with us. I HATE TRISOMY 13. Oh and God doesn’t need you, we need you! There will always be something missing, even if we are blessed enough to parent another child. I am sorry I have not been the best mommy, wife, friend, or person in general. I have been in a cloud of darkness, chasing after my star. Right after you left us, I honestly don’t know how I was alone with Jax most of the time. I would talk to you everywhere I was, which I still do. My hands would shake all the time. I just wanted to sleep forever. I was more angry than I am now, which is saying a lot. I pray to you, instead of God most of the time. Jax, Daddy and I definitely would not have survived this far without each other. It felt like I stepped out of a pool of water after about four or five months. I could hear and see around me again, I could talk again, but I am still wet and soaked with sadness, anger, and longing for you. Your big brother is doing much better now. He was angry too after you had to leave us. He was sad and would ask me where you were. He would ask me if you were asleep in your white basket (that the hospital put you in), or in your blue bed (viewing casket). He used to always ask me if you were going to get better soon and come to stay with us. I tried to be honest with him but not scare him. I told him that your body did not work anymore and that you couldn’t come to stay with us and you weren't here anymore. But that we must always love you and remember you. He doesn't understand when I tell him your spirit is still with us or that we can still talk to you. Maybe someday, we will all be together again. He doesn’t ask for you to come home to us anymore, but he tells you good night and I love you every single night. He never forgets I don’t even ask him to do it and he’s barely almost 3. I know you hear him. Sometimes he grabs your teddy bear and says he just wants to bring you to read stories or to go wherever we are going. I know, he's so sweet. He loves you. We are all able to be around babies now too. I held your 2^nd cousin a few weeks ago, his name is Jace. I honestly felt like I had a connection with him, like somehow maybe you two hung out before he came to be with his family. It really was the closest I have felt to you in a while. As if Jace was telling me “it’s alright, he is ok”. I know I know I must be crazy, but I believe all of that.

Now that I have opened this unorganized pile of thoughts I have so much to say. I just want to keep writing. But it’s now 3 AM and I know Jax will rise and shine early, that’s just his clock. I want to make you proud Gabriel. I want to be the best that I can be, for you and our family. I WILL carry you with me always. I will try to do something good with your journey and keep it alive. It’s still going baby boy, just because you are not here with me in my arms, does not mean that you are not still going to do great things. You already have inspired people, showered people with love, and taught us all so many things.

I love you so much.

XOXO,

Mommy

A Miracle..

In October I was busy preparing a birthday party for Jaxson, my first born. His birthday was on a week day so we decided to have the party the following Saturday, October 15^th. It was going to be a race car/ truck party at a local park. I got together party favors and made a table cloth to look like a road. He was so excited for the party he would say, “Is this for my happy birthday party?” Ha, I love his phrases. Wednesday that week was his actual birthday so we made happy birthday pancakes, had some presents and cupcakes later that day.  Thursday I started baking cupcakes for the party. I wasn’t feeling great but I thought maybe I hadn’t rested enough that day and just needed to lie down. I finished baking and went to bed late.

I woke up several times with back pains. Finally at about 4 AM I realized I was going into labor pretty quickly and woke up my husband. We called my mom, and bless her for coming to stay with Jax at 4 AM! We were a little shocked because it was two months early, but we knew anything could happen at any point. I kept hoping that these were false labor pains on the ride to the hospital. (Why is it that when you are having these awful labor pains, the car ride is soo LONG?! Every bump seems to bring on another contraction!)  I wanted him to have the best chance possible to prove everyone wrong and make it through despite the Trisomy 13. I prayed to God: my baby is sick, please be with him. When we got to triage, we found out that my regular Dr. (who never takes a vacation) was on vacation until the next Monday. The nurses asked if I had spoken with my Dr. about early labor and created a plan. We hadn’t of course! I had an appointment the next week that we were supposed to discuss all of these things during. I stayed for a few hours and we decided to try to stop the labor. I was given a shot to stop contractions. They monitored me for a while and then allowed my husband and me to go home once the contractions had completely stopped. I was really happy and hoping that this would work and Gabriel would stay cookin for a little longer. At this point all I could think was how I had so much to do for Jaxson’s birthday party and I was supposed to be on bed rest for a whole day! I don’t think so.

I did take it easy that Friday and tried not to do too much. I put together some more things and made some fondant while my mom and sister decorated cupcakes for me. I was so determined to make Jax a cake, AT LEAST! It was going to be a bright red fire truck, he’s obsessed. So Friday afternoon I started having contractions again but they were all over the place and not close together. I laid down and rested but they persisted. I kept praying over and over and over “Please God, give him more time, it’s too soon.” My husband put Jax to sleep and we waited. I took a shower to ease the pain and then they started to get closer. At about 11:30 PM I called my mom and we took Jax to her house this time. I waited in triage for a few hours again. The nurses gave me two shots to stop the contractions this time. This was our last attempt, if this didn’t work; we were just going to let the labor proceed. We stayed until about 6 AM and then were released because I hadn’t had any contractions for three hours or so. By the second hospital stay, Julio and I were exhausted. We went home and went back to sleep. I woke up at 10 and was having contractions again, but they were one right after another this time. We went into the hospital around 11 and were admitted pretty quickly. Labor is intense but ladies, having your husband rub your back with a racquet or tennis ball really does do wonders!! We had this nurse, Kristen, who was absolutely amazing. The nurses truly make or break the experience. My Dr. was still out of town and so another Dr. was going to deliver the baby. He was also a great person to have in the room with us. He was so empathetic and helpful. Gabriel Ruiz was born at 4:22 PM on October 15^th, 2011.

I will never forget the moment that I first saw him. He was born two months early and breathing on his own, even with all of the problems inside his little body.  ‘A fighter of epic proportions’ according to Julio. They put him on my chest and Julio and I couldn’t believe that he was here, he made it. We couldn’t stop staring at him and kissing him. Suddenly, he opened his eyes to look at us. He cuddled up to me just right and clutched my finger, then grabbed his Dad’s finger. We talked to him and told him how much we love him. And then, the most amazing thing happened, he cried. He cried and started to get color. His heart rate began to be normal even! His little quiet cry was the most beautiful sound, I couldn’t breathe. I can’t believe he let us hear him and look into his eyes. I wanted this moment to last forever. It was perfect. He had lots of dark hair, brown eyes, chubby cheeks just like his big bro and dad. He looked exactly like Julio and Jax, except he had my hair and hands. The funny thing was he was a little bit chubby already, he was gorgeous. After a little alone time with Gabriel, Julio and I decided to start letting in a few family members at a time. We wanted everyone to meet him if they had the opportunity. My mom brought Jax in first. He was a little nervous but we told him this is your little brother Gabriel. Slowly all of our family nearby had come in to see baby Gabe. Since he was doing so well, we had everyone come in at the same time and just spent some time all together. My sister called our friend who is a very gifted photographer. She took so many precious pictures of us all with Gabriel. Those pictures are irreplaceable, they are beautiful and I will treasure them for the rest of my life.

We had this time, where everything seemed to stop. All the problems were invisible and there was peace in that room. Instead of all the negatives going through our heads, we talked and loved Gabriel. Jax, Korben, and Mateo played and made us laugh. We honestly were happy and completely unaware that our newborn son had so many health issues. How is this possible? Only an angel can bring instant peace, comfort and love within a family.

The moment came, when I knew something was wrong. Julio’s mom was holding Gabriel wrapped in blankets and a cute green striped hat. She told him that he felt a little cold. He was still breathing and looked to be sleeping. We re-wrapped him and Julio held him tight. I wanted to give him kangaroo care right then and there but I didn’t, there were too many people and Julio needed to hold his baby too. Eventually the NICU Dr. came in to check on Gabriel and I saw her listen to his heartbeat and then examine his body. She wrapped him back up and gave him back to Julio. She then came and spoke with me. She said he was beautiful and I did an excellent job. I looked at her and she told me, he’s passed away. Julio stood up and hugged me with Gabriel in his arms. I was numb, I didn’t believe her. He was just here.

I didn’t even notice everyone leave the room to give us time alone. There are no words for the way I felt. Heartbroken doesn’t begin to explain it. Julio and I couldn’t even talk; we just cried and held onto our baby we wanted so badly to wake up. After a while, we were moved to a recovery room where we were invited to stay as long as we would like but at least for one night. Julio had been holding Gabriel and handed him to me to hold. Looking at his face, you just knew he wasn’t with us anymore. He was gone and his lifeless body was so cold. He almost seemed heavy. Our wonderful nurse helped us to start talking and was so empathetic towards us. She was truly an angel as well and she will always have a special place in my heart. What are we supposed to do? How do we even begin to process this? All of the feelings of sadness, bitterness, anger, and guilt rushed back from the day we first found out about Gabriel’s condition. Some of the nurses took Gabriel’s measurements and weight in our room. They gave me a pink plastic tub and some baby Johnson soap. I gave him his first bath crying. This should be a happy experience with my baby crying until I wrap him and hold him. The nurses took him and made plaster footprints for us to keep for him; and ink prints also. When they brought him back to us, he was wearing the clothes we had gotten for him the week before. A white and gray thermal onesie, a gray and white striped beanie and some tiny socks. They had also placed him in a small white basket on some crocheted blankets. They left us alone to be with him. We were supposed to get some sleep that night, yeah right! I remember lying down and just crying with him. I held him, and then lay next to him holding his little cold hand all night. Why, why was he taken from us? So many thoughts ran through my head all night. I ended up falling asleep for a couple hours before waking up to a new day. A new day without my baby boy. Julio and I called our family and offered for them to come say goodbye to Gabriel. Somehow we were going to leave the hospital that day and we would have to leave Gabriel there.

Everyone came and said their last goodbyes. When Jax came he sat in a chair and held the basket holding Gabriel. He said “I love you Gabriel, I love you little brother. Hi baby.” My brother got this on video; I think we all broke down. I couldn’t bear the thought of never seeing these brothers together again. Julio and I couldn’t leave; we stayed and held him until late afternoon. Our nurse from the delivery was our nurse again that day. We cried with her and begged her to please take care of our son. We decided to go home at 6 PM that day. We went out through the maternity doors without our baby. I was holding some of our keepsakes and a white rose that the staff had given us. We got everything into the car, said our goodbyes to Kristen and drove away. I couldn’t breathe, again. What just happened? The song from The Band Perry came on ‘If I die young’. Has anyone heard this song? It talks about the sharp knife of a short life, just the right words. I couldn’t take my eyes off of the white rose. I honestly don’t know how Julio walked out of the hospital and drove us home. He is amazing.

Needless to say this was an incredibly sad and heart wrenching experience. What we have to think in order to live each day is that we were blessed to have Gabriel even if it was only for a short time. Gabriel made it past almost all of the obstacles that he faced. He gave us four incredible hours with him. I am so grateful and proud of him. He was truly a beautiful miracle. After carrying and meeting him, I would do it again in a heartbeat. I can’t imagine not having him in my life. He has blessed our family in so many ways. He will always be my second son named Gabriel. We will always remember him and carry him with us throughout our lives.

The Diagnosis..

How do I start this? I am a stay at home mom of two boys. My first was born October 12, 2009. My second was born October 15, 2011. When I found out I was pregnant with our second child, I was nervous and ecstatic at the same time. I was so scared that this was not the right time. Time.. huh funny how it is never the right time? Anyway, I kept imagining the chaos of two kiddos running around the house and me chasing after them all day. After a few weeks I started to feel better about it and even got a little excited. After a few months my husband and I told our families we were expecting another child. His due date was December 09, 2011. Everyone was excited and life could not have been better.

I went in for a routine ultrasound at about 20 weeks. We were so excited because this was the ultrasound that would tell us whether this baby was a boy or girl. I remember that my husband and I were fighting over something so mundane that day. I can’t even remember what it was. They called my name and we went into a dim lit room for the ultrasound. In my experience, the tech usually guides you through what he/ she is looking at and measuring. They usually tell you what is what and how large the head is and so on. During this ultrasound it was complete silence. She took a photo of the pelvis area and pointed out that this wonderful baby is a boy. She found the heartbeat and told us simply this is his heartbeat. She went on measuring and getting still shots of several organs with no conversation. After finishing she told us that she was going to speak with the Dr. and he would be in to speak with us in a moment. My husband and I were so overjoyed to be having another boy mostly because our first boy is amazing and would love love a brother. The tech eventually came back in and told us that the Dr. would need to web conference with us because he is not in. Immediately we knew something was up. We went into an office and spoke with a Dr. through the webcam. The Dr. said ‘We have discovered some birth defects with your child. They look to be very serious. The defects are comparable to those associated with a genetic disorder called Trisomy 13. Trisomy 13 is “incompatible with life”.’ Incompatible with life. The most insensitive and devastating words I have ever heard. They have certainly left an imprint in my brain. So cold. I don’t think I heard much after this. The DR told us that we would need to schedule an amniocentesis to confirm that our baby boy had Trisomy 13. We went right away to the office that the DR was located at and had the procedure done. After the procedure the DR told us a little more about Trisomy 13. Trisomy 13 is a disorder where the each cell in the body has an extra copy of the 13^th chromosome. There is a type of trisomy 13 called mosaic trisomy13. This means that the extra 13^th chromosome is only present in some cells instead of all cells in the body. People born with this can live several years with the right care, our child did not have mosaic trisomy. He also told us that the baby could pass away at any point. He could be stillborn, or he could live for a few hours or days. He said there is no chance at a life with this child, he cannot survive. He said that we had the choice to terminate this pregnancy if we so choose.

My husband and I were speechless. I remember walking to our car and bursting into tears as soon as we closed the doors. I don’t think I stopped crying for days. How could this happen? Maybe they are wrong. Maybe the images were warped in some way and my baby that I feel kicking me is healthy. I felt him grow and kick me and I’m hungry just like every other pregnant mom. I never even considered terminating this baby. I asked my husband how he felt and he felt the same. We don’t have the right to take away someone else’s life. I told him a mother’s love is instant. We’ve already bonded and he’s ours for as long as we are blessed with him.

We eventually told our families about our new baby boy’s diagnosis. Everyone was supportive and told us to be strong. God never gives us anything we can’t handle they said. I realize this is supposed to be comforting but please. My concern is not for myself at the moment; it’s for this innocent baby boy who hasn’t been given much of a chance. For my 1^st son, who is having his little brother ripped from him before he even understands what a brother is. For my husband who has to stand up and hold all of us after this awful news.

We went on with the pregnancy as normal while hoping and praying for a miracle. We decided to name our baby boy Gabriel. It means God’s warrior. It was rare that he made it this far and we decided to name him for how strong and beautiful he is/ was. We met with the head of the NICU at the hospital we were going to deliver at. My husband and I decided that when and if Gabriel was born alive, we wanted as much time with him as possible. We wanted to immediately hold him and not have him rushed to a surgery or given breathing tubes. We wanted him to have peace and to feel loved. The DR recommended a beautiful birth plan written by a nurse who had a child born with a similar condition. The plan is called “String of Pearls”. http://stringofpearlsonline.org/. After this we just waited and I tried to keep Gabriel as healthy as possible. The emotions were a roller coaster. How was I supposed to plan for my child’s death, before he was born? I kept wondering if this was a dream. This baby kicks me as much as my first did, maybe even more. I really was happy because I felt him every day, we lay together every night. I can’t describe the bond between mother and child, you only know if you have experienced it. It’s beautiful; I couldn’t help but be grateful for him and love him with all my heart. In October I started to feel different. I was having a lot of stomach cramps and started to feel that tiredness that happens at the very end of pregnancy. I almost knew he was coming soon. I decided I needed to get him clothes, and at least one blanket. I think my husband thought I was paranoid and kinda nuts. I can’t explain this either (ha some writer right?) I just knew he would be here soon. It was time to meet Gabriel.