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Phoenixes of L4 - LIVE LIFE LOVE LIFE

Phoenixes of L4

One Day at a Time

– Bessie Seeley

My story is one that is hard to write about and I know will be one that is hard to read about. My story isabout love – in my world, it’s the strongest and most powerful kind of love. It’s about fighting for those you love and then accepting when it’s time to let go. It’s full of the highest of highs and the lowest of lows. It’s about incomprehensible tragedy and grief. It’s about finding small joys in each day and holding onto them tightly. It’s about moving forward (not moving on) and about taking it one step at a time, one day at a time, sometimes one hour at a time. Because I have no choice but to move forward. Let me start from the beginning.
On February 18, 2018, we were blessed and overjoyed to welcome our second baby boy Matthew into our family. We were thrilled to be parents again to this sweet little blond haired blue eyed happy baby, and our then four year old son Harrison was the sweetest and most gentle and loving big brother. For the next several months, we relished in the joy that having a new baby brought to our family. Our family was complete and life couldn’t have been better. I loved everything that came with being a mom to these two boys and was so grateful for our newest blessing. I loved thinking about what Matthew would be like, how different or similar he’d be from Harrison, and I especially loved watching Harrison with Matthew. Becoming a mom for the second time is so different than the first. I vowed to myself to take in every moment because I knew just how quickly this baby stage flew by. I loved pushing Matthew in his stroller while Harrison took a ride on the front. I loved traveling with my two boys in tow. I loved taking them to McDonald’s for breakfast on Saturday mornings, to the park and to the bookstore. I was settling into our
new family routine. We had big plans – plans that included buying a new home for our newly expanded family, plans of family vacations. So many plans. It was mid-September. Matthew was almost seven months old, and when I look back at this time, it was a time where in hindsight little things started to seem a little bit off, but there were no glaring concerns. Matthew wasn’t sitting up yet and he wasn’t reaching for toys yet, and I can say this now, but because I had no reason to suspect anything to be wrong, I assumed everything was fine. Our routine chromosomal
genetic screening at 14 weeks pregnant came back normal and our anatomy scan at 20 weeks showed a perfectly healthy baby. I had no concerns brought to my attention by Matthew’s pediatrician up to this point. I was in Miami visiting my mom and I remember having a conversation with her that seems to be my first memory of worry. She had read an article that morning about how lack of eye contact can be an early sign of autism. Of course my feelers went up, I slightly panicked, I tried getting Matthew to really look at me, and I called the pediatrician and asked if I needed to schedule an appointment with a developmental pediatrician. She said that he had met all of his milestones from his 2 month, 4 month and 6 month appointment – and I stopped her and I said, did he? We never discussed his milestones.
The next week Matthew had a helmet fitting for his plagiocephaly (flattened head) and wouldn’t track the light up toy that they were using to try to get his attention so they could take the pictures they needed. After about 15 stressful minutes of trying to get him to focus on the flashing light up toy, through tears of frustration I shouted (politely) to the staff that he doesn’t track and he won’t look at the toy and he won’t grab the toy. These words coming out of my mouth sounded strange and scary and there was so much unknown. So much fear.
At around six weeks old, Matthew’s then pediatrician had referred us to a pediatric ophthalmologist because she noticed one of his eyes seemed to gaze outward slightly (exotropia). We had seen the ophthalmologist at 6 weeks old and again at 3 months, and there were no concerns at that point as we were told it should correct itself. All eye exams done during those visits were normal. Life as we knew it changed drastically later that month when at Matthew’s next eye exam, the doctor expressed concern that Matthew wasn’t tracking. His eyes wouldn’t follow any lights, any voices. We were concerned because he was concerned. He recommended that Matthew have a brain MRI to check for cortical visual impairment. I didn’t sleep at all the night before the MRI, and was an emotional wreck the morning of, not able to hold back my tears as I dressed Matthew in his gown and took him back and softly sung to him as he went under anesthesia, the first time I would do that of many. I thought that day was the most difficult day I would ever have to face – how wrong I was. I remember sitting in that waiting room, my mind racing with disbelief that my baby was having a brain MRI, and wracking my brain with signs that I may have missed, and I came up with nothing. Another mom was in the waiting room and she could obviously see the worry written all over my face and she came over to me and sat beside me and said something that would stick with me throughout this entire journey with Matthew – and that was that I have to be his advocate. No one else will care about him as much as I do and no one else knows him better than I do. After two incredibly long days of waiting where time seemed to stand still, endless phone calls to the radiology office, begging and pleading for the radiologists to read the results so that I could breathe, eat and sleep again, the results came back…normal. I vividly remember that phone call at 5pm on a Friday. I cried tears of joy and jumped up and down when he said those words…normal. To say we breathed huge sighs of relief was an understatement. We celebrated and started moving forward again from this unbelievable scare.
For the next few weeks, on heightened alert, we watched as Matthew just seemed off. He couldn’t sit up like all of his friends in daycare, it didn’t seem like he could see, he didn’t reach for toys, didn’t grab onto them, didn’t put them in his mouth. So many pick ups from daycare where I would just be frantic and ask how his day was and hope that the teachers would say that he rolled over today or he grabbed his bottle today. None of that was happening. I remember around this time asking his daycare teachers for his progress reports as I was gathering a file for my upcoming appointment with the developmental pediatrician. He was missing just about every milestone. The music teacher had noticed that during a morning where they used puppets, it seemed as though Matthew couldn’t see the puppets, but he did respond to the music. I’ll never forget the first time I saw his eyes flutter. I was changing him on the changing table at home and for several seconds (probably at least 5 full seconds) his eyes darted up and down, up and down extremely quickly. I was in a state of disbelief at what I had seen and denial that this wasn’t normal. His eyes seemed to flutter and roll around quite often at that point and it was happening more frequently. Over the next couple of weeks, I made appointment after appointment, phone call after phone call – with a developmental specialist, vision therapist, and I found a new pediatrician. We had made an appointment for a second opinion at Bascom Palmer Eye Institute in Miami – all in the desperate search for answers on what was going on with our sweet boy. I have video after video on my phone during this week watching Matthew intently – watching him kick and squirm and move around – but it was hard to distinguish what was normal baby behavior and what might have been abnormal.
On October 16th, as I had done every day prior, I walked into Matthew’s room at daycare to pick him up after work. He was sitting at the little table with built in chairs and immediately upon walking in the room, he froze. I described it to the doctors at the hospital later that night that it was as if I had taken a remote control, pointed it at him and hit the pause button. Every part of him froze – he wasn’t blinking, he wasn’t moving, and then the color in his face started to drain. I remember rushing towards him, grabbing him out of the chair with the help of his teacher, laying him on the floor and then he started crying. And then he started to fall asleep. I buckled him into his stroller as quickly as I could and rushed down the hall to pick
up Harrison from his classroom and the same episode happened again. I grabbed Matthew out of the stroller, heart pounding, frantic and ran down the halls into the reception area holding him up in the air screaming out loud that he wasn’t breathing and for someone to call 911. I didn’t know if I was crazy from all these weeks of worry or if something was really wrong. We were taken to the hospital via ambulance and so began day one of our nightmare. Matthew had had a seizure – an absence seizure and had 7 more later that night while hooked up to EEG monitoring, one of them resulting in his oxygen level dropping to extremely dangerous levels.
That hospital stay was full of poking and prodding and test after test on our little boy. Matthew had a lumbar puncture to check for meningitis, a chest x-ray and ultrasound of the abdomen to check for tumors, and more bloodwork than an 8 month old should ever have. The feeling of sitting helpless in a hospital room chair while a team of 10 doctors, nurses, students, neurologists, etc. come into the room and say that “neuroblastoma” was something they were trying to rule out when just a month before I was enjoying life with my perfectly normal family was mind-altering and earth shattering. After being discharged from the hospital days later, we had to come back for another brain MRI, a PET scan, and an MIBG scan to check for microscopic tumors – all in the search for a cause of the seizures. Matthew had to go under anesthesia for each one of these tests and scans, and I sung him to sleep with tears streaming down my cheeks each and every time. My sweet boy. So not okay. So scary. So much out of our control. More waiting. More worrying. More sleepless nights. All of the test results came back…normal. What we learned was that Matthew had extremely abnormal brain activity – his EEG revealed that his seizures were constant. Every second of the day, 24/7, he was seizing – some were visible and some were not. The seizures at that point (October) were focal seizures – they would start in his occipital lobes (the part of the brain that controls vision) and would spread to his temporal and his parietal lobes, causing
his whole body to go limp in our arms and sometimes caused him to stop breathing for short periods of time. He was put on a combination of anti-seizure medications to try to stop what was happening. While he still didn’t have a formal diagnosis, the neurologists were calling it “occipital lobe epilepsy.” Twice per day, before work and when I got home, I would administer 5 to 6 full syringes of medication to my baby boy. I would give him a bath and I would sing him to sleep. This was our routine. While in October he was still responding to our voices and tickling and touch, in November that connection started to dissipate. On November 5 th , Matthew had just been released from the hospital yet again and we witnessed another type of seizure, one that lasted about 45 seconds and caused his tongue to twitch and his right arm to move erratically while he stared off. Once again, panic ensued. Without much hesitation, I put him in the car and drove him 4 hours south to Nicklaus Children’s Hospital in hopes of getting a second opinion, another doctor, another neurologist who could fix my baby. Matthew was seizing the entire trip – one
seizure resulting in me pulling over on the turnpike to run around the car to the backseat and make sure he was still breathing. Unimaginable. Surreal. As we pulled into the emergency room entrance, he had another seizure that caused him to turn blue. We spent five whole torturous days in that hospital – days that were pure hell, days that I couldn’t eat, couldn’t sleep, couldn’t think, couldn’t breathe, didn’t shower until my mom forced me. I remember several occasions where I would have to walk outside of the room because it was all too much to take in but didn’t have the energy to walk and I remember just crumbling to the hallway floor in tears one day and a janitor came by and picked me up and said I have to pray, I have to believe in God. I didn’t know how I was going to live like this, how we were going to live like this, how Harrison was going to live with this, how Matthew was going to live like this. The neurologist told us that if we didn’t get the seizures under control, Matthew would never develop because the brain needs rest in order to develop. Matthew’s brain at that point was never resting. It was firing off abnormal electrical signals 24/7 without a second in between, even while sleeping – and we still didn’t know why. He was put on some new anti-seizure medication (Depakote, also known as valproic acid), one that has severe side effects and can cause liver damage, and we were sent home – defeated, exhausted and emotionally drained.
I remember sharing with my friends while in the midst of unknowns and uncertainty that I was going to take a break from my stress. I was giving myself permission for just a few weeks to take a break – worrying wasn’t going to change anything, it wasn’t going to change the ultimate outcome. This was 100% out of my control and there was nothing I could do to change it or fix it. I also remember feeling like I was stuck in a bubble of grief and fear and unknowns and the perfect life that I had before all of this was just ripped out from under me so forcefully and suddenly without any reason why. I wrote on November 29 th to Robin that “I’m struggling to stay strong for Harrison but it seems hopeless that I will ever get out of this really deep funk I’m in. I feel like I’m suffocating all day long.” On January 1 st I read a post from Joanna Gaines and then re-posted it as it spoke so deeply to me. Joanna wrote the following – “…I’m challenging myself in this new year to live for now. The present. Taking in every breath, every sight and sound and holding it dearly. Not thinking about how the good ol’ days have passed us by or how the best is yet to come. But that right now, this very second, this is the gift. These are the days. These are the moments. And I’m gonna breathe them all in. If there’s pain and
sorrow, or happiness and hope, let it in and then let it out. I want to enjoy the now because it’s the only thing we can actually embrace. I want to hold it carefully. Hold it thoughtfully. I want to rid myself of the little distractions because I have found that these are the thieves that steal our moments and rob our days. But time, time is our most precious gift. Here’s to seeing and finding the beauty, the hope and joy in the right now in 2019.” I remember taking lots of pictures of Matthew this day – with so much fear and unknown about what 2019 would bring us.
Over the next couple of months, and countless trips to the ER, Matthew continued to worsen. His seizures grew bigger, stronger and longer and it was obvious to us that the medication was not working. We had to remove him from daycare. We had to find a nurse that could care for him during the day at home so that we could go to work. I had to sign up my 11 month old for in home nursing care. I wanted so desperately to wake up from this nightmare I was living. We were living in a world that no innocent child belongs and visiting parts of the hospital that no stroller should ever be pushed through. Also during this time, I was going to work, trying to have normal conversations, reading Harrison stories in bed, taking Harrison to playdates with his friends, going to Publix, trying to live life with a medically complex child at home, a child who I loved and adored with my entire being and felt so incredibly helpless that I had to watch him struggle, watch him have seizures and there was nothing I could do to fix it. In early January, I videotaped a series of seizures that once again were unlike any I’d ever seen before
and even more frightening and heart-stopping and shocking than any from before this. I sent the videos to Matthew’s neurology team and they brought us into the hospital for more video EEG monitoring to see what had changed. We knew deep down in the depths of our hearts without anyone telling us that the news would not be good. We were supposed to be there 24 hours and after one sleepless night in the hospital, I held my breath as the team of doctors and nurses led by the neurologist walked into the room around 10 a.m. the next morning. I knew what she was going to say before she started to speak. She had tears in her eyes and held my hands as she told me that Matthew’s seizures were now generalized in his whole brain and his EEG was showing signs of hypsarrhythmia (infantile spasms), a very serious and severe form of seizure activity that were causing damage to Matthew’s brain, irreversible damage. The plan was to put him on two weeks of very heavy steroids to try to slow down the spasms. At this pointMatthew was completely unresponsive to anything going on around him. He wasn’t responsive to my singing, to my touch, to voices. He wasn’t able to. We sang, we touched, we talked to him anyway.
We went back to the hospital in mid-February for yet another video EEG to see what effect the steroids had had at slowing down Matthew’s seizures. And again, we already knew the answer. The steroids had no effect on Matthew’s seizure activity, and once again, his seizures had gotten worse. We cried, we held onto each other, we held onto Matthew, we prayed, we begged and pleaded for answers. We called a meeting for later that afternoon with all of Matthew’s doctors, his neurologist team, hospital directors, his new pediatrician who had taken us in (she was the resident doctor who cared for him during our October 16th hospital stay. There were about 12 of us crammed into a little room on the 5 th floor of the pediatric ICU unit at the hospital. A kind hospital volunteer stayed with Matthew in the room while we had our meeting. After a moment of silence, Jason began because I couldn’t speak. We discussed Matthew’s condition openly and honestly with his doctors, we asked their opinions, we pushed for answers, we talked about where we go from here, and we asked if Matthew was experiencing pain from his seizures. His neurologist believed that he was experiencing pain. I shared with the room that as his mother my job was to protect him. I was his fierce protector, and wasn’t it my job to keep him safe? I fought for Matthew for so long. We fought for Matthew. And we continued fighting in that meeting. We shared that our only priority for him was comfort and quality of life and if he was in pain while he was awake, that was not okay with us. During that meeting, we made the incredibly difficult decision to bring in hospice care with the full support of his medical team.
I’m not sure that I can articulate fully how it felt to live through those next few weeks, through Matthew’s first birthday. We had conversations with Harrison about what was happening with his little brother. We had to be strong for him during those conversations and afterwards when he’d have questions. We snuggled and cuddled and loved on Matthew so hard those next few weeks. His seizures were nearly constant – he would go limp in my arms 20-30 times a day. His doctor under the hospice program came over to visit one evening and we sat together on the couch for several hours. I told her the story of Matthew’s birth, how happy we were, how happy he was, how we didn’t know anything was wrong until just a few months ago, we cried together, we loved on Matthew together. Three weeks later, in the early morning of March 11 th , after a night that will be forever imprinted on my heart, Matthew took his last breath. Two days later (and after 3 excruciating months of waiting), we had a diagnosis. We learned from the geneticist that Matthew had a de novo mutation on the NTRK2 gene – a new mutation unrelated to our genes. The geneticist assured me that there was nothing we could have done differently to prevent it. She said that conception is a very complex process and everything has to line up just right and Matthew was one of those extremely rare cases where it didn’t. The NTRK2 gene manages the receptors in the brain. The reason he declined so quickly was because the synapses (gaps) in the connections were quickly expanding throughout his brain at a rapid pace. It explains his developmental delay, why he couldn’t see, why he couldn’t fully connect with us, why he was having seizures as often as he was. To have an answer, a diagnosis, helps us. Knowing that we and his doctors did everything we could for him and that nothing we did or didn’t do would have changed the ultimate outcome, we feel more at peace. We loved him as hard as we could for as long as we could and he knew that.
It has been five months since our family endured the most gut-wrenching, devastating, heartbreaking and traumatic night of our lives following the most gut-wrenching, devastating, heartbreaking and traumatic five months before that. We are living today with an incomprehensible void and the gravity of the loss is still so present and my fear is that it will always be there. There is not one minute of one day that I’m not thinking about Matthew. The thing about grief, and what I’ve learned over the last few months by living it and by hearing from others who have experienced it, is that the saying “time heals all wounds” doesn’t apply to someone who has lost a child. Time won’t heal my wounds. My heart will ache for Matthew until I
take my last breath, but what I have learned from others who have experienced the loss of a child is that these feelings won’t be this raw forever, and I’m holding onto that. But boy do I miss him. I miss the days when life was carefree. I miss the days of pushing Matthew into daycare with Harrison riding on the front of the stroller. I miss the days of taking both boys to the park. I miss the days of snuggling with Matthew after his bath. I miss the days of singing him and rocking him to sleep every night. I miss the days before things got hard. Our hearts are in millions of pieces and we are forever changed. I am not the same person I was before Matthew. And because I’m a different person, my relationships are taking more work. Relationships with family and friends are wonderful and strong, but they are different. I am different. Jason and my relationship has gotten so much stronger through this experience. He is the only person who shares the same love for Matthew and who knows exactly what this feels like. My love for him has grown immensely and I am grateful that I have him by my side in the exact way that I need him to be. I’ve also learned that grief happens alongside of and mixed in with all kinds of other emotions. There are many memories of Matthew that are sad and heartbreaking and make me cry just as there are many memories that make me happy. I have conversations just like everyone else at the coffee machine in the breakroom on a random Tuesday and can make small talk. At the same time, I’m grieving. I can drop off Harrison at school and can smile and laugh with him when he tells me a funny story, all while grieving. I’ve also learned that I need to lower my expectations of people, and I don’t mean this in a negative way, but in the very early days, I would get upset after conversations where Matthew’s name wasn’t brought up or I wasn’t asked how I was – like truly asked how I was. It seemed to me like it was the elephant in the room and I didn’t understand why it wasn’t talked about. Not that it had to be the main focus of the
conversation, but at least mentioned. But what I’ve realized is that no one wakes up in the morning with the intention to hurt me or hurt my feelings. And I get it. Before going through this unimaginable tragedy, I would hear about tragedies in other people’s lives and I just couldn’t wrap my head around it and didn’t want to. Hearing hard stories about things that people are going through is uncomfortable. People want your sad story to be over. But what I want my people to know is that I love talking about Matthew. The worst feeling for me is when Matthew’s name isn’t mentioned or when people want to avoid talking to me about him or about what happened. I love hearing when someone else speaks his name – it keeps his memory front and center and that’s exactly where I want him to be always. My message is this: life is subject to change without notice. There will be unimaginable joy and incomprehensible tragedy. Live each day fully. Live with intention. Be grateful every day. Find the little joys, embrace them, and hold onto them tightly, for they will get you through days when everything is crashing down on you. A woman I met recently who is far into her child loss journey and who I have been honored to have met said these words to me recently and I will never forget them: “one day someone will be able to move through something they didn’t think they could because they will be a witness to your grace, strength and courage today.” This is why I share my story.
I received a letter from one of my dearest friends shortly after Matthew’s passing, and I share an excerpt from this letter in closing because it is relationships like this that have kept me strong. It’s relationships like this that have helped me to put one foot in front of the other. It’s relationships like this for which I am so beyond blessed to have.
My Dearest Bessie,
During this time of unimaginable grief and sadness, I wanted to write you this love letter. Because there are no words I could give to heal you, no wisdom that would make your pain any less, no comfort I can offer, or gifts to make you smile. All I can give you is my love, and I need you to know how endless it is. Your life and kindness and radiant light are limitless and rare and more amazing than you may ever realize. Those of us lucky enough to share in your light are blessed, and when your light flickers or begins to fade we are all there to fiercely protect you. Please feel my arms supporting you. Please feel me wiping your tears and holding you up. Your pain is my pain. Your fights are my fights. Your love is my love. Your family is my family. You are so very special. You will always be my sweet, funny, thoughtful best friend. You will always be a loving, generous and devoted daughter and sister. You will always be an affectionate, dedicated, caring wife. You will always be a gentle, selfless mother with endless patience. You willalways be Harrison’s superhero. You will always be Matthew’s mom and guardian angel. You light up so many lives. As we navigate this unimaginable loss, we are incredibly blessed and so fortunate to have family and an army of friends who have rushed to our side when we’ve needed it most. I have been truly astounded by the amount of love that our family has been shown. We cannot do this alone, and how fortunate we are to have so much support. My hope is that Matthew’s life and my story will have a ripple effect on people that hear it. I will share it, people will share it, and in some small way it will touch someone and in turn Matthew will have touched them. I will tell my story and talk about how Matthew touched our lives for the rest of my life, a life in which I will do my very best to live fully, to love hard, to find joys in the little things, embrace them, and hold onto them tightly, and a life that I will continue to live with Matthew always in my heart.

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