I haven't posted in a while. I did not want to post until I had good news about Eddie's pulmonology appointment. After a lot of phone calls and sitting on hold, he will be seen on the 10th. Not great, But it is better than nothing, and I am taking what I can get.
His sleep has been awful, and he seems tired all the time. I know I am. I really hope there will be help, and not more questions.
This has all be really hard on all of us. The health nurse asked me if I was doing okay on Friday , because I "sounded depressed". Of course I am. This has been trying on all of us, and I have the requisite mothers guilt to go along with it. I lie awake at night asking myself if it was something I did while I was pregnant with him, if this is my fault because I ate something, drank something, took something, and so on. I know I am not the only mother out there who thinks these things, so If you know someone who has a special needs kid? Hug her. Because she probably needs it.
Kurt doesn't really talk about it. He is just as tired as I am. I know he worries as much as I do. I know he's frustrated.
Elyse and Edan, my other two have felt the impact as well. Edan used to be my little side kick, he slept with me, did everything with me, spent the day following me around, and now a lot of my time is taken up with baby things, and dealing with all of Eddies stuff. Elyse , I think feels forgotten about. I try and make time to do things with her, and let her know how much I love her. She compensates by pretending that her baby doll is Eddie, and she is me. We used to take them to do things a lot and now we cant.
I feel terrible.
My mom came out this weekend, to celebrate my birthday early ( I will be be 31 on the 3rd). Kurt and I went to a friends goodbye party ( I will miss her dearly) without the kids. It was the first time in about 8 months. My mom watched them for us. She is a respiratory therapist, and more than qualified to stay with Eddie. Anyone who watches him is supposed to be CPR certified.
My mom paid for us to have dinner, alone. It was really, really nice.
She went home on Sunday, and made it so Kurt could take the kids to see "Planes" , and so I could get coffee while Eddie and I waited for them after she left. I had been feeling bad, Because Edan really wanted to see it, but it was too costly to take him. She really made his, and my day. Best (early) Birthday weekend ever. I think My kids would agree.
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