This Christmas I bought way too many gifts for the boys. Hubs and I don’t really agree with going overboard on the materialist aspect of the holiday. But, I can’t help myself this year. I have so much guilt, anxiety and sadness rushing through my veins that I’m trying to absorb my boys happiness.
First of all, this is the last year of the last Christmas. Last Christmas, we didn’t know Monkey was a boy. We didn’t know he had Bear’s disorder. We still had hope of a healthy baby. I’m tired of it hanging over me. When Christmas comes I want to look back on the year prior and see how much my boys have grown. This year, I look back and still can see everything I’m grieving.
This is the first Christmas that we really have an idea of Bear’s skills. This is the first year that he’s sitting, mobile and able to play with toys. His first Christmas he got the Laugh N Learn farm and blocks that he has NEVER played with. Even though that farm sat out in our living room he’s only been able to play with it for about 6 months now. Last Christmas he had just learned to sit up and was not yet crawling at all. His sitting skills were still very new and he had trouble righting himself. He still needed a lot of assistance with playing with toys. He only had the basic of button pushing for very simple toys.
This year, he’s mobile. He crawls, he kneels, he pulls to a stand, he cruises the couch and he has mastered a bigger array of play skills. He can work the Fisher-Price Gumball machine, he can stack stacking rings, he can play with stacking cups and slide beads on a bead maze.
This is the first Christmas that I have to swallow that both my boys have special needs. I’m grieving the loss of a lot more than most people are able to realize. I’ve been trying to focus a portion of Hubs’ income towards retirement. With boys who will always be dependent on us, we can’t have the dream of retiring, moving away or traveling all the time and having minimal responsibilities. We don’t have to worry about an “empty nest”. I’m grieving the loss of ever seeing my boys get married, or have children. I know I shouldn’t write these out of my boys lives, however they have an intellectual disability. It is the defining characteristic of their disorder (it’s in the name). They’re both going to have a markedly diminished cognitive skill set. I don’t know if they’ll ever be capable of independent living, so I’m letting go of hope of marriage and children. I want next Christmas to come, so it’s not the first one with Monkey. I wish it could be more joyous for me than this, but alas, it’s not. I want so badly to be able to excited for his first Christmas, but I just want to get it over with.
As Christmas approaches I’m really struggling with an overwhelming amount of guilt for passing this disorder on to them both and a lot of sadness for the difficulties they’re facing in the future. A lot of people around me are having babies, especially girls. I’m overjoyed for everyone of them. However, my heart hurts for what I won’t have and what I hoped for more than anything when I found out I was pregnant with Monkey and when we got Bear’s diagnosis.
On a lighter note, some of my exciting gifts for the boys:
We got both of them the Fisher Price Little People Nativity, a Veggie Tales movie and the entire Baby Signing Time Collection.
Laugh N Learn Table (I got this free with another purchase)
Snugamonkey Good Night Monkey book and stuffed monkey