2018 has been difficult for us and this December marks the 1 year mark since the diagnosis. Has things gotten better? My mom always ask me oh J must be better now and sleeping better right? No, he’s the same mom. We are still struggling and quite sleep deprived. We still get the bad nights where he is up before the sun rise. Just on the 26, he didn’t sleep till 1am as he struggled to settle in and woke up at 3:30am. Sleep is one of our biggest struggle and that leads to other things such as meltdowns because he is exhausted and self injury because he is frustrated.
It is still hard seeing him cry for hours, bang his head on the floor, purposely fall and hurt his knees or foot. I am very doubtful I will get use to this or this will be easier as he age. As a mother, one of the hardest thing is to witness your baby struggle. I think what has improved is that I’m stronger now. Not physically but mentally. I know what to do when he has his meltdown most of the time. Know how to redirect him to something I know will calm him down. It is much easier at home when he has his moments but when I’m outside his strength is starting to surpass me. I know for a fact, I will not be able to just pick him up soon because I’m already struggling. He’s not heavy for his age but when he is fighting and wailing around it is extremely hard. The other day, my husband suggest I take him out to run errands then go for lunch. I was hesitant at first but felt guilty as I raised my concerns about handling his meltdown outside. Of course, I’ve done it before alone but it was never fun and I’m always frazzled by it. Long story short, he was angry before I even locked the car. It was raining so his jeans got wet from dropping to the floor. I think I did well, I put him back in the car to calm him and took my time. When you are not in a rush to pickup another kid, it’s better. We managed just alright after but was late for lunch so didn’t get the date I wanted. Picked up food and ate it at home instead which was perfect.
Ok back to 2018, it was a struggle but we had a LOT of accomplishments. He waved goodbye the one time to me, he kisses me on demand, he spelled BINGO, he puts his own shoes away very so neatly, he is still being potty trained but I think he mastered the pee part of it, he tolerates his sister a tad more, he showing more affection to his brother, he gets his brother to help him when we are not around, he follows people game songs, we hear so many words, he lets me cut his hair now, he learning to eat new foods. The list really does go on. Those accomplishments make me very very very proud. We celebrate every single success around here. We got his school registration for 2019 in place and we are waiting to set up a meeting to discuss his needs. He’s doing 2 days of BT and in a specialize preschool. Ideally, I would love to get him more therapy but I’ll work very hard towards that for 2019. He is doing very well and such a clever little boy. He honestly has the sweetest smile and laugh.
My family has been absolutely phenomenal. It brings tears to my eyes seeing that they treat him with so much love. They’ve always been such great aunties, my kids are truly the most blessed children out there. Hubby’s parents has been amazing, I am just so thankful. We are still waiting for my MIL report but hopeful the surgery got rid of all the cancer.
There is so much to be thankful for. Even on the bad nights, I am still thankful to wake up to 3 beautiful healthy babies. Their laughter and hugs melts my hardship away for just a bit. As I age and talk to people and hear their stories, I come to realized how lucky I am. Whatever the future brings, we are ready for it. Goodbye 2018, and welcome 2019. I predict 2019 will be the best year ever.