Saturday, March 14, 2009

High Maintenance

I want to thank you all so much for all the heartfelt words. It's amazing to have such a wonderful outpouring of support. That website you linked is fantastic Niobe. I wish we had a similar organization in Canada, but I haven't found one yet. Either way there is lots to read on that site. We have so much to talk about Becky. How long has Lily had nystagmus? And thank you everyone for reminding me that I'm strong and I can do this.

Today was pretty good, I went to my Coping With Change workshop, we talked about accepting our emotions, anger, guilt, frustration, disappointment, sadness. The workshop leader told us that it's perfectly normal to feel sad and angry and everything else after having a baby even if it was the only thing in the whole world that we wanted, she said it doesn't mean you love your baby any less, we're on a rollercoaster of emotions. She even talked about women who go through infertility and grieve for the loss of the baby they believe they'll never have and then end up pregnant and confused, and then feel guilty for not being completely fulfilled as a mother. Even if all they ever wanted was a baby and then they feel like a horrible mother for complaining about how hard it is. But it is hard and it's okay to acknowledge that.

I talked a bit about being a "special needs" parent. And how sometimes I feel angry and resentful that "everyone else" (really it's not everyone, but it feels that way sometimes) ends up with the perfect baby who gets to come home immediately from the hospital and then they complain about diaper rashes and how fast their baby outgrows his/her clothes. But as I explained I'm not mad at Skyler, or C or myself or anything tangible, it's just this frustration that I have to get out. It's not even that I hate the appointments, they are a pain in the butt, but I'm happy and grateful that we have them all to make sure he is doing as best he can. No for me it's the knowledge that I will one day have to sit him down and explain to him that he will never have biological children that kills me. It's knowing that as soon as he is old enough to run around I will have to get him a medic alert bracelet, and he will forever carry around his dependancy. That I am going to be one of those stressed out over protective moms who doesn't want him to do anything stressful because his body just can't cope with the stress. For instance I don't think I will ever allow him to participate in contact sports like hockey or football. Ah well, it's for the best, too many injuries.

In the positive again, C and I have come up with a name for Skyler's issues, neither of us were happy with the term "special needs" so we've decided he is a high maintenance baby/kid. High maintenance seems to fit him better anyway, he needs more work (administering meds, watching for any sign of stress) but it's too early to say if he will be developmentally delayed or speech delayed or autistic or any of that. If he is, well we will just learn to deal with it. We're pretty well equipped since we've already got all this down.

After my workshop one of the program coordinators at the center came and introduced me to my home visitor. I signed up for a program called Families First where a home visitor comes to your house once a week and helps you come up with things to help your baby's development. They evaluate where the baby is at, and they show you games to play with them to help them strengthen any weak areas. They show you crafts you can do, toys you can make for your baby, and all sorts of other things. They also connect you with any other resources you may need. I really liked the girl who will be visiting us. And she said she would be willing to come along to any OT appointments as well so they can work together with his development. I think that's fantastic. I'm also getting us involved with another program called Children's Special Services where they get you in touch with everything you need as a special needs parent. Therapy programs, any medical devices he may need, counselling, programs to help with development, etc. I'm trying to establish as many supports as I possibly can.

As for Skyler he is being as adorable as ever. Smiling and jabbering away at me and C and N. She thinks he is the coolest thing since Mickey Mouse. Today N spent a good ten minutes talking to Sky and telling me "Look at him! Look at him, he's smiling, he's making funny faces" As she's saying this I'm thinking ahh you have no idea, I could stare at him all day long.


Verna said...

I once heard someone say "God only gives high mainenance kids to special parents". You are special, and God will give you courage and strenth!

Never Clever said...

I admire your strength! That's fantastic that there are so many programs available to you. Good for you for taking advantage of them.

Amy said...

I'm glad you're getting connected to the resources you need! And keep on staring at that beautiful little face.