We waited with anticipation for your arrival and now that day has come. Just 23 minutes short of a 40 hour labor and here you are, welcome to the world baby Olivia. "She is 4lbs 5.6oz," the NICU nurse yells out. Your father and I were aware you would be small and might need lung support so we held our breath when the NICU nurse whisked you away to ensure you were stable enough to live on your own. Minutes felt like hours but soon enough I hear the room door open and everyone starts cheering as it was announced that you did not need any support whatsoever. The nurse hands you over to me and I finally get to hold you tight.
Wouldn't this be the most amazing story if that's all there was to it? This would be our happily ever after for our family that I always dreamed of. But this is a messy life and things happen, details were left out, and now I'm left with an aching heart that I am trying so desperately to mend.
“Maybe my life isn’t shattering, it’s falling into place.”
My Child:
I am about to really open up my heart and just lay it all out there. I don't know if you'll judge me, my hope is you'll connect with me but whichever side you favor sharing my life in transparency is what I needed.
With one last push the doctor helps to pull you out. As she reaches to lay you on my chest, she physically struggles and you only make it to my lower abdomen. Without careful filter she blurts out, "oh my goodness that is a short umbilical cord," as she goes on to tell the attending nurse that is the shortest one she has ever seen. But I'm a new parent; I don't know how long they are "supposed" to be. So I push that worry aside because you're here, on my skin, and the feeling couldn't be greater. Your daddy cuts the cord, which he did amazing at, then the nurses take you from me to make sure all is well. My gut feels sick with worry as worst case scenario runs through my mind. But then you enter back into the room and I join the cheer as you were deemed safe and healthy on your own. I knew it was God looking out for you and for us.
The nurse hands you over to me all bundled up in a white hospital blanket. You are so tiny, so precious, so beautiful.... so pale. I am struggling to find color in you; it scares me as I only can see a little gray face. I knew something was wrong, but what? The NICU nurse who went to medical school for this just said you were fine. I try to act like I have it all under control and just nonchalantly mention your color to the labor and delivery nurse. She looks down at you and attempts to stimulate you, not much reaction. She tries again, same response. She tells the NICU nurse who is packing up to leave, "I do not feel comfortable with you leaving this baby here with the parents. Her tone is poor and she lacks color." The NICU nurse reiterates that you passed their test. To this day, I still don't know what that "test" was or what they did while you were gone from my sight. My nurse pushes the subject again and so the NICU nurse said she will call her attending floor lead for their advice. She's standing there at the foot of my bed, her stance shows she's confident and in charge, on the phone she states what the other nurse told her and what her test showed. After about 2-3 minutes she is off the phone stating her lead agreed with her and you are stable enough to be here on your own. I wanted you so desperately to be okay, we had just lost your twin brothers the year prior, I needed you. I lacked medical knowledge up against a nurse so my judgement was low, it was a bad call. Mommy made a bad call.
Every parent goes through self-doubt and maybe a little bit of guilt mixed in but in the end you know you do your best and that perfection is not achievable. But I do not want to take away from the rawness of emotion either. It's true I feel responsible at times, it's true the “what if's” still run through my mind, it's true I still feel all those hurt and angry emotions. But we have God on our side and I know he'll sustain your health. I was sure of it.
Hours later after you were not able to feed and you could hardly move, it was then that labs would be done in NICU. But you weren't supposed to stay. Daddy said he would be right back with you. You had both grandmas and your tio waiting to visit when your dad walked back in the room with the nurse. I remember her piercing words cutting through the air, "do you want me to tell her or you?" Wait, what?! I quickly shifted to your dad for answers before I saw you were missing from his arms. "Where's the baby?" I asked him. Tears began filling my eyes before he could even get the words out. He sat next to me on the bed. He was close and spoke low. He began telling me how you were spotted by a nurse who seemed concerned for your color and tone. She finally checked your vitals and realized your oxygen level was severely low. You were then admitted to the Neonatal Intensive Care Unit. Your dad tried to comfort me and say you could finally get the help and care you needed and that it was a good thing. He said we could visit whenever we wanted. I couldn't hold back, the tears began to flow as I struggled to keep it together in front of company.
Finally I told myself, "My daughter needs me to be strong." Oh, how I hate how the word "strong" is used nowadays. I connected this with; don't allow yourself to be sad, no self-pity. Don't show emotion, especially tears. If you cry, others will cry. But through this journey I've learned that is so far from the truth. Crying and feeling is being human. It's a part of a needed process to recovery. Being strong is to feel.
My body was exhausted from giving birth so I rested a couple hours before going to the NICU. Your dad wheeled me over in the wheelchair to go visit you. When I saw you lying there, it felt like I left my body. Witnessing you hooked up to a CPAP machine I could hardly see your little face. An IV through your tiny scalp, made my heart tender. There was an EEG of 28 cords coming out from your head that I couldn't even fathom how you felt during that process. The vitals machine hooked up to the rest of what was left of your 4 pound body. I regretted waiting a couple hours to see you. You needed your mom and I wasn't there. I'm so sorry, please don’t be mad. The guilt struck and it hit hard. I no longer felt like God was sustaining your health. My prayers shifted from please God keep my baby healthy to take home to God please just keep my baby alive.
Not long after your admission did we learn from a couple MRI's and EEG's that you had sustained a perinatal stroke that left behind extensive brain damage. The peds neurologist explained that you were also having seizures as a result and that it would be a lifelong seizure disorder. He stated you would more than likely be completely blind, have a delay of speech, and develop cerebral palsy since the back part of your brain was now gone. I remember him distinctly saying the best thing we could do was to take you home and just give you lots of love. My world stopped and then shattered. After he left, I had to leave the room too because I didn't want you to feel the hurt and sadness I was feeling. You needed a hopeful mommy and I wasn't that. I balled my eyes out in your daddy's arms outside next to the hospital food court. How could this have happened? Who let this happen? Why us, again? It felt like we were being attacked over and over. Now I was officially wallowing in self-pity, doubt, guilt, anger, you name it I felt it. Shortly after came denial. For a brief moment I thought, nah there's no way it's to that extent. The peds neurologist probably mixed up her images and/or name with another patient. God wouldn't let that happen.
It was a 26 day stay in the NICU. And yes, your dad and I were there for every part of it. So many emotions we thought we were cautiously working through each day as we learned how to care for you. We were learning to cope with the facts and still hope for a miracle. You were strong when I was not. You fought for your life when you shouldn't have had to but I'm so happy you did. That day you came home was so special yet so scary.
My Fiancé:
We have always prided ourselves on how much of a good team we make. We pick each other up when one of us is down. We cheer on the other to success always. But this, this was different. It wasn't just a crash course to parenthood we were trying to maneuver through together. No, it was a blow to both our hearts simultaneously. We were tearing open old wounds from losing the twins.
I pretend so hard I'm an engaged counselor when you're vulnerable enough to open up to me. I want to make it all better but the truth is I feel just the same. I find myself reciting the airless words others tell us out of comfort. You know, the ones we hate like, "everything will be okay," or, "she'll get better." Sometimes I want to scream "NO, everything is not okay! Do you not know what lifelong seizure disorder means?!" But I don't, I don't want you to know how mentally unstable I feel. I want to cry so badly but it never feels like the right time. We get so busy with work, caring for our little one, cleaning the house (when we can), ubering (because cooking seems impossible), and making sure the dogs are still alive. As I reflect at the end of the day I only see what wasn't done. I'm sorry babe, I'm sorry for not making you home cooked meals during the week anymore, or having the house clean every day when you come home, or even looking nice for the day so you can be proud of whom you're with. Please don't be mad. I keep telling you it's temporary until I get used to a "new normal" but the truth is I don't know when or even if that will be.
I miss you. I miss you so much. Even as I write this and see you sitting in front of me staring at the tv, trying to escape our current reality, I can't help but to yearn to be in your embrace. It's my safe spot where I feel secure. But you need that; you need to feel security from the constant shifting of our daughter’s health. I want you to have daddy breaks to rejuvenate yourself, but with this I struggle too. Most recently you have finally come to a spot where you demand your time and take it without question to keep your sanity. It angers me, I think how selfish. Do you not care about my well-being? My only company for the last 5 days straight has been with a 5 month old baby who demands my attention and care and 2 dogs that just use me for food. I look forward to weekends just as much as you in hopes to get some time to just breathe. But it's difficult. It's difficult when you just leave to do what you need because I justify it saying, "Well he needs his time." But now weeks later I discover that my body feels depleted, my mind is beyond exhaustion. I begin to resent you for being able to do these things because I can't. I envy you.
I remember calling my sister after an argument with you to be able to calm me down. My head nowadays has the crazy ability to go from one extreme to the next and I know it's not healthy so I lean on to someone who can set me straight when needed or encourage me. The phone rings and she answers, "hello, is this your daily call?" Yeah, that's how bad it got! I begin telling her the situation and that although you're in Olivia's life I feel like a single mother screaming for help, for someone to just cut me a break and give me some me time. Of course, I go on trying to tell the story so it weighs in my favor and after I'm done she responds with words I will never forget. She didn't tell me who's wrong or right. She said, "Tina, I get it. You have been through so much and your emotions are so strong at this time because of it and they only allow you to see but so far. Right now you only see today and how you are feeling in this moment. So I will act as your eyes, I will see further for you. Motherhood feels lonely at times but it's the most important title you'll have. God set that for you. Daniel's title is a provider, that's what God set him as a man. His stress comes from being able to support you guys and when you try to switch the roles it causes chaos." Man, were those words powerful. I was quiet the rest of the night reflecting on them. It truly changed my perspective and attitude towards us working together and what we wanted to achieve. I didn't realize the difficulties that a father goes through and I probably won't be able to know all of them because I'm just simply not one. But what I do challenge myself to see now is how much pressure there is on being not just a dad, but a good dad. You not only have to show up day in and day out, you have to interact with your child, with ours particularly you have to do her therapy too, then your expected to work full time to provide, come home to help clean and cook as needed, all while having a good attitude and maintaining your own mental stability. No wonder some cave into the pressure. Praying for you has never been more important than now.
I love you so much and appreciate the immense amount of patience you have towards me in learning to be a new mom too. Finally talking to you about how I was feeling and what I was needing and how to make that work with your needs and feelings has been one of the biggest stepping stones I feel we have accomplished together.
My Family & Friends:
As I type and retype this section over and over trying to find the right words, I begin realizing how much fear I really had inside over not only raw honesty in this section but telling this whole life story. I realized how much power I gave into opinions over my life and my daughter’s life. I struggled for a long time on if I should even write her story let alone share it. I kept thinking about how criticized I would be for what was written or how people's natural reaction is to think it's all for show and attention. But I always come back to the same conclusion, this was and is my therapy and my choice to share in which I feel lead to. So here I go again, love me or hate me it’s happening.
They say once you have a baby your friend circle gets smaller, well that was an understatement! If we can count pets as friends than I am doing fabulous! One of my social media friends posted something along the lines of, "it's not the number of friends you have that counts, it's the genuineness that matters." I certainly agree. While the friends and even family members that come around or check-in periodically have decreased, I have made the most authentic relationships I've ever had so far in my life. When my family was struggling in the NICU in every way possible the ones that showed up for us spiritually, emotionally, financially, and physically were not the ones I would have noted. But expectations will do that to you. You have a set of invisible unexplained expectations for those you are counting on. I struggled with this so much. I was hurt and upset at those I wanted to be there for us and weren't. I've learned to forgive them and myself because I needed to but I am loving at a distance without forcing people to be in our lives because that wouldn't be real and authentic. I was stunned at some of the ones who were in our corner fighting for us because not only was it unexpected but it registered to me how much my eyes passed over them in my life. Here I am looking past them at other people’s backs for help when I had a crew looking head on at me with arms wide open.
Unfortunately, if we're talking raw honesty here it's hard at times to accept that too. Don't get me wrong I love the people in our lives but reality is it's a struggle to gain advice from someone who hasn't had a chronically ill child or been through something similar as you. During these past few months I've had friends tell me how to cure my daughter and family tell me who I need to speak with for comfort. Again, I love that their hearts are in the right spot but sometimes.....most the time, you just want to vent without the reciprocation of advice. I understand there are awkward silences but rather that than words of opinions that mistakenly turn to hurt. I already feel discriminated against to the unknowns; I just need support from those I do know. It was hard enough for me to accept that our family will need help with my daughter’s health so when I feel negative energy from those we know it makes me draw away that much more to create safe boundaries.
Once we realized the severity of her situation I immediately applied for Social Security Income (disability). With my initial interview my sister got to witness firsthand how quickly the company made me feel like the scum of the bottom of the Earth. It's as if the interviewer assumed I was trying to scam the system. I'm sure there are people who do but the judgement for all is harsh. When you are walking through such a tough road in life and then shown no mercy but judgement instead, it's hard to pick up your head and keep going. Once we got to the medical portion of the interview and I explained my daughter’s diagnosis and condition her tone changed. She became a caring nice individual which almost hurt me even more. Now I felt like she just felt sorry for me. I just wanted her to be kind since the beginning. After the interview was done I felt so belittled and disrespected.
I'm sharing this story because it's not just me taking care of my daughter and working part time. I am also fighting for her to get benefits; I'm dealing with lawyers regarding her case, on top of the multiple weekly appointments. There are so many points throughout the day that take shots at my "mom ego" so when I'm being vulnerable enough to open up and share our progress or setbacks I am really reaching out for support and affirmation. As I am nearing 30 years old I am learning that background and context is so important. When someone (me) tends to be defensive there is probably more to the story than them just having an off day. Please don't be mad, this journey, this roller-coaster, this life is teaching me new things every day and I apologize for any ill actions or words I may have had in the past. It's not fair for me to be upset or disappointed with others when they are either being helpful in the only way they know how or just don't quite understand how to react because the situation is brand new to them too. The beauty of learning means I can move forward with humility in attempts to not make the same mistakes and I can write this so hopefully you too can grasp concepts quicker than I did. Connection with one another is a fascinating thing and timing is so important. My heart needed to shift into the right spot to be able to unveil my deepest tragedies for healing.
“Whatever you do, just don’t give up. You’re geared for this.”
Real Mom Life:
If you've made it this far then I am confident you will finish. Thank you for not giving up on this story I call life.
Special needs, special needs....special needs. Those two words ring in my ears as my mind tries to accept them but my soul declines them. I feel so lost as if motherhood isn't hard enough. My mind quickly jumps years into the future as I'm picturing my daughter not able to walk, have mouth control, or see in elementary school. There's visions of little kids picking on her, some intentional and some merely due to just her being different and them being curious. I get mad and automatically picture myself going to jail. It may sound extreme but it's a real fear. A fear of not being able to protect my daughter again, this time from emotional hurt. I begin to think how crazy life has turned out to be. Memories of high school run through my mind. I remember seeing the "special ED kids" is what we called them. I never made fun of them or discriminated, I knew better. But I never volunteered to help either. I knew it took a special kind of person with lots of patience to help in that department and that definitely was not me. I remember thinking God I hope my future children are normal because that would suck. Oh how my thinking has evolved now. But there was one thing my naive 17 year old brain was right about; it does take a special person to care for the medically needy. I just didn't realize that was me and that I was capable.
But then my mind comes back to my current reality and I struggle to tell myself today to just make it through the day. For so long now I've been on edge. On edge because at any moment she can break into a seizure, on edge because she can choke and stop breathing, on edge because she can block her airway without having the strength to clear it. These are real, real scenarios we've been through multiple times. My first time in an ambulance was due to my daughter. Fear is real, anxiety is real but I strive to remind myself that those are my personal struggles not hers. But it still hurts at times. It hurts when I walk into her room and slowly look around and wonder if my anxiety will ever give her a chance to sleep in her room.
For a while it felt like she was sleeping more at the hospital than our own home. Not too long ago she was hospitalized 3 times within 2 weeks. That was exhausting! Sometimes you just want to say, "Fix my daughter already so she and I can get some damn sleep." The most recent hospitalization we had, 10 weeks ago (a record for us), I was done being the understanding momma. I had now evolved into the pissed off, no patience having, rude momma. I had to witness my daughter go through a 36 minute seizure at home and quite frankly I was fed up. An intervention needed to happen and it needed to happen now. Her innocent little body could not handle that and responded by becoming lethargic with little response. The paramedic in the ambulance witnessed my daughter’s lips turning blue and quickly reacted. Once we got to the emergency room for the umpteenth time her vitals were not looking good. Her heart rate was low and blood pressure was high. The provider quickly explains that the combination of a low heart rate and high blood pressure could be signs of swelling or bleeding in the brain and they needed to do a CT scan now. As her dad holds her tight and walks her to complete the imaging, I recognize that face. It's worry, its fear, its anxiety. All the same emotions we came in contact with at the NICU.
Not too long after, she was admitted. Little did I know what was to come these next few days. Although her imaging came back negative, her vitals were still not stable. Hours later ICU nurses stopped by to take a look at her and explained that they would be around for help as needed. I later found out that they were on watch because of her low heart rate and if it reached the 50's again then they were going to admit her to ICU. My God, it was flashbacks of the NICU all over again. Only this time I knew better, I knew to speak up. Staring at her vitals machine kept me awake and filled with uneasiness all night. I approached the nurses multiple times about her vitals demanding answers. The following morning during rounds I saw him. He was small in stature with red short hair and a young face. He lacked a brisk purposeful walk like all the other providers. He was the one provider I did not want to meet again as we saw him during a past visit that I felt could've gone better. But here we are feet away from each other meeting again discussing my daughter’s current status. He described her as stable, improved, and ready to go home. I was like wait a minute, are we talking about the same Olivia here? My fierce momma side ushered in and in a borderline yelling voice I described what I thought the plan of action should be based on my status of comfortable. We bounced back and forth on opinions until others in the rounds gazed wide eye at us with shocked faces. He ends with, "I will come by later this afternoon to have a long meeting with you one on one to come up with a plan of action." I was pissed; all I kept thinking was how he was probably just trying to push her out because he had other patients waiting for a room. I did not feel like he cared for her. Instead I felt like I got into trouble for push back and now I have to meet with the principal.
As hours went by my anger lessened. I soon prayed for us to be able to reason with each other in order to come up with a logical and reasonable health plan for my daughter. Once he came in and sat with me he became unexpectedly understanding. He asked if she was in the NICU in the past and then explained how I had become so reliant on machines telling me how she is doing that I am not paying attention to what she is showing us. He stated, "She is portraying that she can do this, that she is strong, and has made it through. Now it's just up to you to LET her be strong." He said his heart is with NICU parents because those tragic instances have a way of wrapping themselves tightly into our lives without knowing it. It registered to me at that moment I had a heck of a lot more healing to do. My fears were keeping both my daughter and I from progressing. We later agreed on a plan of action and trusted one another.
Honing in on my daughters positive strides whether small or big pushes the both of us to maintain our positive walk. Some days it feels she is stagnant and others she surprises us with new learnings. Recapping the past of predictions; Olivia developing cerebral palsy, having complete blindness, and lack of mouth control makes me actually worry less. I see her now with having her vision, no diagnosis of cerebral palsy, and such a gabber, and it fills me with such joy and motivation. Despite the HIE, hypotonia, and epilepsy diagnoses, she possess such positive vibes and is an incredibly happy baby.
I wish I could say I am all healed and here are steps 1-20 to obtain healing from tragedy but that's not realistic. It is day by day for me, some better than others and that's okay. Everyone heals in their own way, just as we all hurt differently. A good friend of mine told me to talk as nice to myself as I do to others. I needed to appreciate my journey and begin to tell myself, "please don't be mad, exchange that guilt for grace." Grasping tight to hope and faith is what helps redirect my steps. Staying rooted in God, trusting that he is looking out for my daughter is what I cling too. I look at her and I see a miracle worker. He has kept his promises making her whole and healthy thus far, he wouldn't give up now so neither are we.
As you come to an end of reading you are able to get back to life as you know it. Ours continues only today my daughter’s story can now live through you too. I made a promise that I will not let her story die and I thank you for helping.
Thank you to my fiancé for supporting my vulnerability and allowing me to share our story.
Thank you to my daughter for making me a mommy in this world. Olivia, you are doing amazing things!
