The truth is - I am writing this at 3:00 in the morning. I'm dead tired after 2+ months of no sleep but I couldn't shut my brain off. After being up most of the night with him - my husband went to lay with Abram in his bed so that I could get some rest - yet - hear I am - pecking away at these keys because it was either do this or sit in the dark and stew or cry.
People assume that because Abram has had success on cannabis oil that his life is "fine" and that he doesn't have to struggle anymore but that is far from the truth. Every day is a struggle for Abram. He has to try VERY HARD to do the things most people take for granted. Whether that be simply walking to the mailbox and navigating his feet on gravel or taking the steps downstairs to get to our level of the house. Today on the way to the mailbox, the Garbage Truck came through and after an incident at school where he started punching himself in the face as the dumpster was being lifted into the air and the loud metal sound (banging) sent him over the edge... I held him back in our neighbor's driveway so that he wouldn't run off or hurt himself. Instead he slammed his head into my wrist bone and tried to beat his little face with my hands as I held his so that he couldn't punch his face. The rest of the walk went fine but I have to constantly be on guard.
It is HARD to go places (like parties or the playground or play dates) with Abram because I so yearn to be able to sit and chat with friends but Abram requires my assistance 100%. I can't "just" let him go off as he doesn't understand danger, has no concept of the fact that digging in a drawer can hurt him, or that opening someone's closet and throwing everything out of it isn't actually a very nice thing to do. I can't let him walk down the stairs unassisted to play in the yard or let him loose on a playground because he will literally walk right off the platform - as he has no depth perception and doesn't understand that the big gap in the metal is for him to slide down a slide or a fireman's pole or to jump off of and he can get seriously hurt. Abram will be 5 in July and our home is still baby-proofed and once he out-smarts that we will have to opt for bigger, more expensive gear to keep him safe.
He also gets into what I call "loops" at people's homes where he finds one or two things that interest him and he continually goes back and forth in these big literal loops to do those exact things every single time. He remembers those loops and he sticks to them no matter what. It makes it hard to visit with anyone outside of my own home because I constantly have to follow him and make sure that he isn't getting into something that can hurt him. So, it makes having an adult conversation difficult at best.
It is HARD to see what other neuro-typical children are doing and although I know Abram is the BEST Abram that I know he can be - it is and always will be difficult to catch the glimpses of what-could-have-been. I don't stay there long and try my best not to linger on those thoughts but it is honestly a kind of grief that will ALWAYS be there and that is 100% okay and it is normal. It will always rear it's ugly little head and give me that little tinge of sadness but only long enough to remind me that Abram is Abram and he is so strong and so brave and fights so hard to have every little bit of freedom that he has. He accomplishes all the things that everyone else just takes for granted. Abram doesn't know the difference of *not* doing those things and since he's my only child - I've never experienced those things as a mom myself. Sometimes it's just hard to get those glimpses and wonder what he'd say to me if he were able to express things in that manner and I wonder if he yearns to play with other kiddos or if it's just not even a thought that crosses his mind. The not knowing kills me.
It is HARD to always be positive and keep a smile on my face when nights are long and days are hard and things are a constant struggle to keep and maintain therapies and doctors appointments and routines in place in our life. It is difficult to go nearly 5 years on little-to-no sleep and spending the very little downtime I do have fighting for everything that he deserves or defending myself as to why he needs such things.
Well intentioned people say some of the most misinformed things and for parents like me it's a constant battle to explain things well enough that people understand my son's medical diagnosis and that I don't just endlessly fight for his rights to have adaptive equipment and access to safe, legal medical cannabis just for shits and giggles but because he actually NEEDS it.
As Abram ages, it's getting a little easier for people (strangers) to see that Abram isn't "typical". That in itself makes my heart hurt a little. It's hard to take him shopping now if the store doesn't have the special needs cart because he's getting too big for the top of the cart and letting him walk through the store is honestly - too hard to do if you want to get out of there with what you went there for in the first place AND not have everything at eye level and below swiped off the shelves entirely.
I share Abram's story so people who love us can get a glimpse into what life is like for him and for us. I share his story so that everyone else who has a child diagnosed with UBE2A Deficiency Syndrome can find us and connect with us and have a little glimpse into our lives: the good, the bad and the ugly. I share it all because it's the only thing that keeps me grounded and it's brought such wonderful people into my life.
Throughout my ups and downs with emotions - one thing remains true: Abram is a fighter. He always has been and he always will be. He is stronger than anyone else I have ever known and he never gives up. He has his bad moments in a day but as soon as they are done - they are done - and he moves on throughout the rest of the day with a smile on his face. He doesn't linger on his unhappiness like we adults do. Abram has had to work so hard to do the simplest of things that everyone I know takes for granted and because of that - we get to celebrate all those little things, too. Abram is my very own personal little hero and a daily reminder that no matter what - life is worth smiling about.