We're still here...

Several have noticed and inquired about our silence. We appreciate the concern.
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To put it simply, we have been under great strain as a family. We’ve been faced with issues we have no experience with and honestly, have no idea how to handle. We have been greatly challenged in our roles, especially Ray and I – as parents, as a husband, as a wife…and really, as human beings.
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We have watched Grayson change tremendously over the last 6 months. His tantrums that go way beyond what a toddler goes through when they hit the “terrible two’s” are of such great magnitude. Whether it lasts 15 minutes or over an hour, he often becomes completely unrecognizable. During that time, he cannot connect with anyone else in any way. It is something that just has to be waited out. Our number one goal is to keep Grayson protected from himself. He has caused himself quite a bit of injury, including some hard hits on his head.
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In the last 3 weeks or so, we’ve had to call 911 twice. Grayson passed out and became completely unresponsive. It was the scariest, worst experience of our lives. We knew he wasn’t dead because he was breathing but his face was expressionless and his body lifeless. After a breath holding spell was ruled out, the doctors suspected seizures. Lots of testing (MRI, EEGs, etc) show no evidence of those occurrences being seizures. However, we were told seizures cannot be ruled out entirely because the only way to do that 100% is to have electrodes on his head during an episode. Then, his brain activity would give them a “yay” or “nay” to the seizure question.
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Our poor baby boy has been put through so much testing – outpatient and inpatient. Fortunately, nothing abnormal has come back. So far, he’s checking out medically in every way. We are so glad of that.
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Speaking of testing, during his 24 hour EEG, one thing that was recorded is how he acts in his sleep. Ray and I had heard him yelling out (via the baby monitor) many times before but we never looked into it further because he usually does a good job soothing himself and going back to sleep. Since he’s slept in his bed since Day 1, we’ve never watched him sleep an entire night – until Ray, Grayson, Zander, and I all slept in one room together for several nights. We did that because we have a good friend in Mississippi who has a friend who has a friend that could help us start trying to figure out Grayson. In Dallas, we were waiting on callbacks and were on waiting lists to schedule an appt that wouldn’t come around for MONTHS out. It was nuts. So, our good friend LeAnna called a few friends and together, they created an awesome plan for Grayson to start getting evaluated, have necessary tests run, etc. After a week there, we got so much done. It would’ve taken MONTHS to do here in Dallas. We are eternally grateful to LeAnna and her friends.
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Anyway, while sleeping in the same room and a few nights, in the same bed, we were hit (literally) with all Grayson’s strange activities at night. We saw him bolt up, scream out, kick as if he were fighting someone, swat his arms around, etc. Let me say again that we FELT it too. It was strange. And when the overnight EEG was done in Jackson, we SAW this all occurring….and the Neurology team conducting the test recorded it all. The neurologist is who is giving us a referral to a Pediatric Sleep Disorder Specialist. It was so scary seeing and hearing our son go from a solid sleep to bolting up, yelling out, walking around (in the crib), and then lying back down again. Actually, we don’t think he was even awake even though he looked to be – with his eyes open and all.
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And most simply explained but probably most heartbreaking is how we’ve watched Grayson’s personality change over the last 6 months or so. He’s not our happy little boy anymore. Most of the time, he seems angry, sad, confused, and/or just LOST. We have watched him struggle with himself over making a simple decision many times. Like us, he seems so overloaded. Also, like us, he seems to have no idea how to deal with all he has on his plate. He struggles. We struggle. Our new baby boy, Zander, struggles to find the peace he needs to eat and sleep. Our home has gone from being peaceful to stressful beyond belief. That is not the kind of environment anyone wants to be in, especially a new baby.
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With all that being said, I feel it is important to declare this is NO ONE’s fault. While we firmly believe there is a reason for Grayson’s suffering, no one did anything to cause this situation. With the help of family, friends, and lots of gifted people like doctors and specialists, we are in high hopes we will find an answer and get him on a path to feeling better. We want our Grayson back.
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Our lives have become you something we can’t even take a break from for a few minutes. The issues at hand are in our face 24/7. During the day, we try to meet every one of Grayson’s needs. The most difficult thing about that is often NOT KNOWING how to help him. He suffers such pain and anguish. That is obvious and undeniable. But after 6+ months of trying to help him, we still don’t know how. And 99% of the time, he resists our efforts. As you can imagine, it is very difficult to be us. Not knowing how to help your child but continually trying and failing is devastating.
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One thing that is extremely hurtful and confusing to me in particular is how Grayson views me. More often than not, he wants nothing to do with me. When he does need or want someone, it is usually his dad. And when his dad isn’t around, his prefers his Mimi, my mom. About a month or so ago, I couldn’t even LOOK at him without causing him to cry, scream, etc. Believe it or not, nothing transpired between he and I to cause this. Yes, I had a baby 3 months ago, but I refuse to believe he would be THAT upset over THAT. Even though, we’ve gotten past him not wanting me to look at him or come near him (and let’s hope we never return to that), he still treats me differently than his dad and his Mimi. He never initiates any form of affection towards me or climbs in my lap to sit with me. Now, neither Ray nor Mimi get much affection from G either but it is much more than I get. If you don’t see the big deal about what I’m describing, you aren’t a mother.
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I have become more of Grayson’s caregiver than his mom. And just being his caregiver has become a nearly impossible job, especially when Zander, who is only 3 months old, needs care too. Grayson needs total and complete attention and overseeing 100% of the time. It has become quite obvious one person cannot care for Grayson and Zander more than a few hours – and even that short amount of time is risky and extremely difficult. One person doesn’t have enough hands or the mental capacity to handle both of them without help. Because of Zander’s age and Grayson’s condition, they have more needs than one person can meet. Believe me, Ray, my mom, and I have tried. It is impossible.
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I still feel I am the best person in the world to care for our sons. NO ONE knows them, loves them, and can provide for them the way I can. But at this point in time, I cannot be all that Grayson needs and all Zander needs. NO ONE CAN. That is why we are so lucky my mom still works the night shift at her work so she can help me during the day. Without her, there’s no way I could make it. Someone would be majorly shorted of time, love, attention, and/or care…and there’s a great possibility Grayson could’ve hurt himself.
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So far, we know we are dealing with Sensory Processing Disorder, a possible sleep disorder, a physical condition with his feet that requires him to wear orthotics (they turn in so much he trips over them all the time), and a speech delay. Grayson is in need of therapy from a behaviorist, an occupational therapist, and a speech pathologist. Without a good plan, there’s a great possibility he will regress. Therefore, Ray and I have worked tirelessly to call various places to ask about their providers, their services, their procedures, etc. The few minutes (literally) Ray and I get to ourselves each day is often spent emailing, calling, or filling out paperwork in efforts to get Grayson better.
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Ray and I both have such full days. By the time we get Grayson and Zander in bed, we are absolutely exhausted. More times than not, the things we had planned to do (go through the mail, watch a TV show, etc) go by the wayside. We want and need to do that thing or things for ourselves, but we have been running on “E” for a few hours already. The choice is simple: Either go to bed or fall asleep 60 seconds into doing whatever it is you had in mind to do. I cannot tell you how many times Ray and I have seen each other falling asleep – head dropping and all – and say, “Baby, just go to sleep. You can do that some other time.” And I also cannot tell you how many times the person trying to do whatever it is they are doing gets mad when their spouse who cares about them very much tells them that! For the longest time, Ray always got a kick out of my grandparents and great-grandmother who would never admit they were dozing off when they were caught in the act! Now, Ray and I both do it. Are we getting old? Maybe. It sure feels like it.
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I cannot stress enough just how difficult things have been lately. The best way I know to describe it is being dragged through each day. We go to bed feeling defeated and wake up dreading what’s to come. And don’t forget we have our little Zander Fella to take care of through the night too. Poor guy. He struggles to have a decent sleep and eating schedule because of all the craziness in our house. We know exactly how he feels. We don’t get much sleep and when we do sleep, we do not get good rest. We both have nightmares. Mine are always about our boys. Often, I dream I cannot find Grayson and Zander. And several times, I’ve dreamed I was walking downtown in the city we live in with Grayson draped across my arms. I’m running down the streets, stopping to knock on every door, screaming…pleading for anyone to help me, to help me get my little boy back. That sound sad? Scary? It is. So sad. So scary. I often bolt up in a panic, am gasping for air, and am soaked with sweat. It takes me few minutes to get my bearings. I’m always relieved to learn that Grayson is asleep in his room and probably just fine. But as I’m trying to fall back asleep, sadness blankets over me as I realize that Grayson is still unhappy – and that we still don’t know how to help him.
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Today, Grayson had two major fits. One started the day and one ended the day. But believe it or not, it was actually one of the better days I’ve had in a week or so. Maybe it’s because I consider it a better day when I see a few glimpses of our happy little boy, the guy who used to be in our company nearly uninterrupted. Those glimpses rarely last more than a few seconds. The moments that last longer are ones I try to create (i.e., dancing with Grayson). Sometimes my attempts fail. Grayson rejects me altogether. You talk about heart-wrenching. But when he is accepting of my ideas (to dance to our current favorite song “Circus” by Britney Spears), I feel a flush of happy start from the top of my head and wave through my body. And instead of escaping through the tips of my toes, it waves back up through my body again and again and again until the moment passes. I must admit I have a hard time not letting my happiness sprout into other emotions. As I hold my beautiful, happy baby boy and dance him around the room, I have to fight back tears. I want to cry because I’m happy. But I also want to cry because I know that once the music stops, my happy little boy will be gone…only to return who knows when.
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Times are tough for the Tse family. We’re all being hurt by something – and we have no idea exactly what it is. And it is Grayson that suffers most. We are adults. Ray and I know it is something. The best thing we can do is work to find out what it is and enlist in everyone’s help we can. Zander, on the other hand, has to be confused and disturbed. But again, it is Grayson that’s really the victim. He knows he feels bad. He is also confused. And he’s so unhappy. I know he wants things to be the exact opposite…and we are trying like hell to make that happen. We’re doing all we can but at the end of each day, we often question if it’s enough. We can’t help but feel it isn’t because Grayson is still unhappy. The most important thing we can do is keep trucking, which is easier said than done. I don’t know how many times Ray and I have both said, “I cannot do this anymore”. The good news is, we always somehow find a way to keep on keepin’ on. When we are using our brains, we partner and rely on each other for support. When we are not using our brains (because we burned all our brain cells that day), we turn against each other. Humans do that, especially when they are pushed way beyond their limits. Have you ever argued when you were exhausted with someone else who is also a walking zombie? The result: NOT GOOD.
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Ray and I are both guilty of letting a tough situation get the best of us. Again, I think this is a human response. When you are pushed so much, you get stressed and tend to get angry. And I’ve seen Ray and I at our worst – fortunately, never at the same time…we’d try to fight a strong gust of wind on a bad day. We know Grayson needs help. What we’ve been told he’s dealing with (so far) requires lots of time, effort, patience, and money – none of which we have much of. How will we get Grayson all the help he needs to ensure he have the best chance possible at becoming our happy little boy again? I don’t know…but we’ll find a way. We feel we might be dealing with more than we know what to give a name to. What do we do about those things? Keep researching. Keep asking question. Remain hopeful.
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I have never felt so helpless in all my life. Grayson needs help. Doesn’t anyone know how to help him?! Until they figure out what’s waging war on our baby boy, he suffers. Therefore, Ray, Zander, Grayson, and I all suffer. Fortunately, I think I have more juice than I realize every day because somehow, I make it. In other words, what’s my capacity? I have no idea. I just know that every drop in me is devoted to Grayson.
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Today, I found a fortune I had shoved in my wallet a long time ago. It reads “Soon you will be sitting on top of the world”. I wish I could recite that fortune over and over again until it came true because at this point in time, I feel the world is sitting on top of me.
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