Happy 2nd Birthday AJ

Oh, how I’ve missed writing!! It has been a while, but it feels like a great time to update my walk4AJ friends and family on where we are in life. I’m sorry for leaving so many of you good supporters in the dark and I hope this post can shed light on where AJ is in his journey. It’s kind of silly, but someone recently posted a question on Reddit and that’s what lead me here.

Starting this blog was the best decision I could have made. Going back and reading how far we’ve come, reliving emotions, and reflecting on what AJ and my family have been through feels surreal and nostalgic. We are much further than we were in 2023, but somehow, we feel stuck in this whirlwind of uncertainty, grief, and exhaustion. Some days we feel present, other days, we’re just going through the motions and have to remind one another to take a break or go have a moment to ourselves. So, physically, we’re thriving. Mentally, we’re doing our best. I suppose this is how AJ feels all the time. His mind, never agreeing with his body.

A parent posed a question on Reddit… Well, to be exact, there was one post with 20 questions, and to sum it up it read something like “what are your practical realities and daily life challenges with having a profound cognitively disabled child?” The post received mixed reviews. Some deflected the question and pointed out how parents with a disabled child wouldn’t have had the time to ask such a lengthy question to begin with. Which is subjective! Others focused on how vain the original poster must have been for asking such a question, while others took the time to give their honest opinion on what their experience has been like. I didn’t spend too much time responding, however, my comment received a lot of recognition, agreeance, and support. The answer to her 20 questions is simple. In short, everything. In detail, still everything, just add ‘that you’d never thought would be affected’ at the end.

These last couple of months, AJ’s body has been in a constant battle with his brain. His last 2 EEG’s have shown increased seizure activity that’s been diagnosed as Lennox-Gastraut Syndrome. From the report, there was numerous seizure types captured, ranging between 5-59 seizures per hour. With his increase in epileptic events, providers have determined he’s high risk for SUDEP (sudden unexpected death of epilepsy) and my husband and I felt that Hospice is the best decision moving forward. AJ has tried a couple of medications and even a therapeutic approach, but there’s been no progress. There’s speculation that as AJ grows, his seizures will worsen and what’s already impossible to treat will have just become more resistant to treatment and cause potential damage to his brain. I’ll spare the details of his daily epileptic events, as most of them are too uncomfortable to share, but this was not an easy decision and every day we go back on our word. It’ll never be easy for us to choose the ‘comfortable’ route over ‘trial and error.’ So, despite him being on hospice, we still promote longevity. We will forever continue to pump 9+ medications with a .02% chance of being effective, before we ever decide to just pump one medication into AJ that is 99% effective to ‘take the edge off.’  He’s tired. We feel that and It feels selfish, but we want him to stay.

On a happier note, AJ turned 2, July 5^th!  We’ve really gotten to see his personality this past year and he’s definitely the type of kid who does his own thing, on his own time. He loves attention and he craves movement with minimal stimulation. He’s not a big cuddler but does like to be held tummy to tummy. He thinks stretching tickles and diaper changes are funny. He doesn’t like anything near or on his face; no kisses, purees, or washcloth. He’s not big on textures, colors, or toys, but he loves music and when people read to him. When he’s stemming, he loves throwing his head back, standing on his feet, or taking baby steps with assistance. He doesn't really have body awareness or know just how strong he is, so he often smiles and giggles as he tries to throw himself out of our arms by tilting forward or backwards, or some other direction he finds silly. He rather soothe his itchy gums with his own finger instead of a teether, and he doesn’t like tummy time if it involves lifting his head. He dislikes when people touch his hair, but he loves bath time and receiving massages with lotion afterwards. He loves to feel included in conversation, and gets very nosey if he hears his name or someone talking about his siblings. When he's around new voices, he uses his eyes and body language to communicate his emotions, getting real still like a statue before attempting to visually track a familiar voice. And despite AJ liking music, he doesn't like when you sing to him and does a consistent "sigh" until you stop. He can't stand wearing his glasses, so he pulls them off his face every chance he gets and he recently re-discovered his G-tube so it’s been interesting watching him grasp and try to ‘wipe’ it off his belly. He’s not into being outside; he doesn't like riding in the car or in his stroller. Currently, he’s in his toddler phase, so before every task he’s either whining, hollering, sighing, or slapping someone in the face. He is so dramatic, but he’s such a sweetheart and he knows what he likes and what he doesn’t.

It’s been such a blessing to watch him grow. Everyone who encounters him immediately falls in love and can tell he has a joyful spirit! His brothers and sisters love watching over him and are so protective of him, even from one another. I’ve broken up more “both of you can watch AJ while I run to the bathroom” arguments than I have actual fights of the boys tussling. I think back to when they told us that babies with Trisomy 18, pass within their first year of life. Now here I was thinking that the terminology, his intellectual delays, malformations, and feeding difficulties are what they meant by saying that, when all along they’ve meant it’s the medical complications that come along with the birth defects, that lead to a short life expectancy. Well, how grateful we are to have experienced 2 years with this kid! He’s 2 and still does the newborn scrunch, blows raspberries, and sucks his own tongue! He’s so resilient and has given us the true meaning of the quote, “Life is precious.”

So, to answer the question, “what are your practical realities and daily life challenges with having a profound cognitively disabled child?” My answer is, everything you can think of, even things you thought would never be affected.  When I spoke about AJ, I described every delay that AJ has. He cannot walk, talk, or eat independently. He doesn’t always respond appropriately to emotions or affection. He does not know the difference between a want or a need. He doesn’t understand the purpose of wearing glasses or why he has a G-tube; why he must have his face washed, teeth brushed, or diaper changed. I am sure he knows when he feels uncomfortable or dysregulated and I can tell he knows his name and who his family is. He can express certain emotions, such as joy, sadness, anger, and pain and he is aware of his surroundings and can sense when he’s in a new environment.

I think it’s fair to say, he does not know what he does not know, right? He doesn’t know he cannot walk, because when he seeks movement he moves or we move him, or that brushing your teeth is good hygiene and that a G-tube is used as a replacement for oral feeds. He doesn’t know that seizures are seizures, only that it feels uncomfortable and it hurts him. How do you explain these things to a child, who cannot comprehend? You don't. You just adjust to their reality. With this brings many practical challenges for families and caretakers.

It’s far more than just AJ’s impairments that we grapple with on a daily. We’ve hit financial hardships, communication barriers, disagreements, and systemic challenges. We’ve made constant sacrifice, in our professional life, finances, within our family, and with our friends. We’ve dealt with daily fatigue, psychological stress and anxiety, isolation, I mean the list goes on and on. Having to always make decisions and be fully responsible for another human beings’ life is difficult and to know it’ll always be like this, is draining. Often times, it feels easier to dissociate and live in delusion. “Babe. I swear I heard AJ say “mama” today.” … “No, I heard him say “dada” first, last night.” But in all reality, we would just love to still use AJ’s name in present tense, even if it’s attached to a white lie over what we heard (or did not hear) him say.

So, to sum up my answer, do what's best for your family and cherish the present, while constantly praying for the future. There is no right or wrong answer, it's not black or white, or one size fits all. Everyone’s journey will look different. We take risks, we make mistakes, we keep our heads high, and we do the best we can. Because every day that goes by becomes another day worth fighting for. For AJ. For my family. For myself.