It has officially been two years since my son came into the world. It blows my mind how fast the years went yet how long the days have felt this entire time. Abram has come so far since his last birthday. Last July he was unable to sit, hold his own bottle or bear any weight on his legs at all. As of his second birthday, he can walk with the assistance of a walker, hold his own sippy cup and loves to cruise around the house via the walls and furniture. The older he gets, the further behind he gets developmentally, so we are still going strong with therapies and he is now starting speech therapy as well.
It is hard to realize that your child will have to work so much harder for all the things other parents take for granted. This doesn't mean that I don't want to celebrate in the milestones of my friend's children because I DO. I always am in awe and excited for the kiddos who were born much later than Abe who are already walkin' and talkin'. I just remind myself that I got lucky because I got to have my little baby be a baby a little while longer than everyone else. (Although, the damaged ligaments in my wrists tell my body otherwise: carrying a 26 pound toddler everywhere is hard work and not easy on the bones. "Getting old is the pits!" my Grandpa used to say. Now I get it.) As most people do, I have been doing a lot of reflecting over the last two years. Abram's Birthday will probably always bring up a host of emotions. I can only hope that someday the trauma of his birth and all that ensued afterward won't sting as much. I often still wonder if the events of his birth and the fallacies of the Hospital in the days following his entry into the world are the cause of his issues but I can't allow myself to linger in those thoughts for long. I will always grieve not remembering holding him for the first time because I was so drugged up after an emergency C-Section that went awry. I will always have the guilt of "what-if" the nurses had attended to his oxygen levels sooner. I will always wonder deep down inside if there was something that I could have done to prevent these issues my son and our lives have had to endure. Not many people have to endure that kind of grief. It is a deep, hollow and echoing grief that sneaks up and slaps you across the face with it's utter bleakness. It is a gut wrenching sadness having a child who can't tell you what hurts because they are unable to speak. It is a never ending heartache not being able to do the one thing a Mama is supposed to do for her child..... the ability to make things better. To not know what is hurting him or what he needs is horrific. To NOT KNOW the name of the thing that has taken over your whole life hurts so bad that sometimes it makes my throat close up in order to stop the tears from flowing. (Like right now as I am writing this.) When people ask what is "wrong" with my son, it. Is difficult to explain because it is not just one thing that affects him. Each little diagnoses that my son has includes a huge list of symptoms that affect his daily life in numerous ways and it is impossible for anyone who isn't living it to even get. That is not to say that other mamas don't have it rough or have a bad day but I think it's hard for people to fathom just what we go through on a daily basis. Unless you've sat on the other side of a two-way mirror to watch your child scream-cry for over a year in order to do something as simple as bearing weight on his legs... you have no idea. Unless you have a child with serious sensory issues there is no way you can get it how much it impacts my son's everything from clothes and eating to playing, socializing and playing. Unless your child has Hypotonia you have no idea how long it takes for my kiddo to reach a milestone. Unless your child has a mass in their brain- there is no way you can get it. (Just how there is no way I can get how hard it is to have an even more medically fragile child. Until you've lived it - you just cannot know.) So, when I say "You are so lucky" to parents of typical children - I mean it. Just like I am so lucky that Abram doesn't have even worse symptoms or diagnoses but I always speak with those parents enduring more than I can imagine - I always speak to them with integrity and respect. So please, if you know someone going through something similar just be kind. Don't make offers to help - Do something. Say something. Be there. I see this a lot in other blogs as well so I know I am not alone in this feeling. Send a card. Send a text. Leave a book for them to read on their doorstep or a silly toy. These are things my friends have done for me. You have no idea how much it cheers someone up to find a dinosaur bath toy, an old silver bowl(who did that btw?) or a Mac Tonight wind-up can do for the soul. NEVER tell a parent with a special needs kid that you have it just as hard if you have a healthy child. I have friends with both typical and special-needs kiddos and they echo this sentiment as well. Parenthood is hard enough for everyone. However, going through a non-stop health crisis since the day your child is born is nothing to scoff at or belittle. Today I bawled in front our Physical Therapist after she said "I have been working with Abram since June and I have rarely heard happy sounds come out of his mouth!". Please let me clarify that I wasn't crying about what she said but the fact that she gets it! It was important for me to hear that someone else can see that something isn't right. It's not that I needed to have my thoughts justified but it felt good to hear that come out of someone's mouth, especially when that someone spends more time with our son than the majority of our family! It was important for someone to be honest with me about how they see things. In fact, if it weren't for a dear friend of mine telling me that what my son was doing was *not* normal at 9 months, I am convinced that I would have lost my damn mind. (Thank you, Lacy. I will always be grateful for that conversation. That meant more than you will ever know!) I feel that honesty is an important part of this life and that sugar coating things doesn't help much other than make the sting of disappointment burn that much stronger. So, while I was trying to happily tell our son's Physical Therapist about how wonderful our wedding was and how excited I was to go see a Neurosurgeon and new Neurologist on Wednesday; I ended up in tears. As we were discussing what needs to be brought to the new Doctor's attention and asking her opinion on what items of importance should be noted - she also informed me that she believes that he is in some sort of pain/discomfort all of the time from his brain lesion. You wouldn't think that someone would be happy to hear that but I was. Not happy to hear that my son is hurting...... but happy that someone acknowledges and confirms it. The fact that this wonderful woman who came into our life (who has nothing but the best intentions for our son) and whom has been working with Special Needs children for decades tells me that something isn't right, was exactly what I needed to hear. What's even better is the fact that she is going to write up a little something for us to take to the Neurologist as she has been working with and observing his behavior for months and knows him better than most. Please know that there is a big difference between being honest and being hurtful. Having someone tell you that your child is hurting and that his behaviors are not normal is honest and a much needed discussion. Having people say that your child's teeth grinding, whining, crying, etc is annoying is hurtful just as is having people comment on how or what your son eats and drinks from. I realize that most of the comments are coming from a place of love and are not meant to intentionally hurt. I am not writing this to point fingers or make anyone feel bad. I just want people to understand how things are. Informing us that our son is fussy, clingy and a mama's boy is not helpful and it really hurts our feelings. I love that my son loves us so much and wants to be around us because some day he won't want to be. At night when he has woken me up for the fifth time and I have gone weeks without more than a few hours straight of sleep.... I remind myself to keep calm and I stare at his little face and realize that just in a matter of years he will no longer want to be held or rocked and that right now he needs me and that is okay. That doesn't mean that I don't have days where I need to walk away and scream into a pillow because it is too much because I do have those days but it does mean that when the people we love look at him negatively because of his Special Needs it hurts. Yes, he is fussy. He has always been fussy. He might always be fussy. However, right now he is a BABY and he can't tell us what hurts. Please remember that he has a Cystic Lesion in his brain that is symptomatic.... it is a very real thing that only 1.5% of the population has to deal with and it is incredibly rare for a Pineal Cyst to be as large as our son's cyst is. It is so uncommon that every single specialist we have seen has had both a differing opinion than the specialist before them. He isn't walking because he has Hypotonia. He literally just started crawling and wasn't able to hold his own bottle until he was 9 months old because his muscle tone was so low. It's not because he is lazy or because I haven't tried. He has foot braces and Physical Therapy six times a month for a reason and it is helping immensely. He has come so far in just four months time with the help of Early Access. He grinds his teeth because he has sensory issues and he is getting some sort of feedback from it. What it is we do not know but making rude comments about it isn't going to get him to stop. Yes, it makes my skin crawl too but there is nothing that I can do about it. He also likes to scratch things, has no fear, gags on rubber, won't touch/eat things with particular textures and he absolutely will not eat or drink anything cold and acts like it is torturous. Guess what? I can't do anything about that either other than help him try to get over those things little by little. I don't know why he is that way... he just is. Hearing people say negative things about him because he does those things hurts my heart deeply. I guess I just needed to put this into the world: Please remember to think before you speak. What you say to parents about their children can be hurtful and taken the wrong way with even the best intentions. Try to put yourself the other person's shoes before making commentary on someone else's child's behaviors, especially so when that child has Special Needs. I have come to absolutely LOVE Tuesdays, as these are the days we alternate Occupational Therapy with Physical Therapy! Today his two teachers/Occupational Therapists came to introduce to him a new realm of toys to help him with his sensory issues. What's best is the fact that these ladies are teaching ME so much on how to deal with him being freaked out by certain textures and how get him to play with toys that typically would for no better explanation - freak him out. You know how you always see the home videos of kids devouring their cake at their birthdays or grabbing handfuls of food to shove in their face? Not this kid. When he touched the frosting on his little cupcake at his birthday party he pulled his hand back in absolute disgust and looked as if he had stuck his hand on a cactus. He did not enjoy it and he wanted to have nothing to do with his cute monster themed cupcake. So today, the Occuplational Therapists introduced new toys and textures to him to see how he'd react. There were a few toys he wanted nothing to do with (a squishy rubber frog and two things resembling kush balls) but he enjoyed playing with a crinkly mylar balloon, a small slinky and a crinkly spiral ribbon that looked like an old gift wrapping bow. He does not do squishy, apparently. It was interesting to watch how he'd explore the toy with his feet and how he'd hide his little hands behind his back so the icky toy couldn't touch him. However, if it was a toy he became okay with, he would eventually grab it to further inspect it with his hands. He of course is a baby and gets bored easily so within the course of an hour we did a lot but they are confident that they are seeing great improvements in his behavior so that made this mama feel pretty good about that end of things. I try to spend the majority of my day with him on the floor playing. He loathes walkers, jumparoos, bumbos and the door frame jumpers. He does not like the feeling of just being stuck in something at all. Our PT advised us against the use of those gadgets and advised us to stick with floor time and it seems to be paying off even though my neck and back may disagree. Right now, Abram just turned one and is functioning at about a six month old level. I'm okay with this considering when I met these ladies Abram couldn't sit up at all and wasn't even attempting to crawl. He can now eat a variety of foods (not just purees) and he moves in with his mouth to indicate that he wants more. He still can't pick up small foods or drink from a sippy but he can finally hold his own bottle so that is one hurdle I consider conquered. If I concentrated on all the things he *can't* do I would become overwhelmed and wouldn't be able to see the importance of all the little things. So, he might not be hitting his milestones but he is learning and improving every single day and those are the moments that matter the most. It's really hard to write a blog about your child and not get emotional. I always heard that "children change everything" but had no idea how loud that would ring true in our first year of parenthood. So much has changed from how I look at the world, how I look at people and how I react to both. I've been told that I expect too much out of people but I think that life is too short to not expect the best out of the people who claim to love you. We have suffered a lot of losses as far as friends go but being the lucky girl that I am, there were plenty of amazing people who stepped up and helped me when I needed them the most and for that, I will truly be thankful.
Just eight weeks ago we went from having a son who was "behind on his milestones" to having a son that has special needs, has started Physical Therapy and Occupational therapy as it was discovered that he has Hypotonia (for which we are still trying to figure out an underlying cause) and after being referred to a Neurologist (due to an issue with his eyes) we were told that our son has a Cystic Lesion of the Pineal gland and will need to be referred to a Neurosurgeon in the near future to remove said cyst. The scary part is the fact that the cyst is right in the middle of his brain and is one of the most dangerous of all brain surgeries. After a lot of research we found a Surgeon who does this operation endoscopicly as opposed to "open" brain surgery and after a pricey consult with Dr. Shahinian of the Skull Base Institute in LA we were informed that the cyst is definitely the cause of our sons "pin-point pupils" and that he would need to have the lesion removed in the near future. However, our son is much too small for the surgery right now and the dangers of said surgery would be higher than allowing the cyst to grow. So, we are to catch back up with him in a year. A WHOLE YEAR. |
About MeHello! My name is Erin. I am Abram's mom, a tireless advocate for UBE2A Deficiency Syndrome and a fierce proponent for medical cannabis. MOST POPULAR BlOG ENTRYJOIN US
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