The Zoe Hotel

Safehaven

This week Zoe had her first sleepover at what we are calling "The Zoe Hotel." Safehaven (http://www.safehavenproj.org/) is a place that provides respite care for children with complex medical, physical, and developmental needs. We first checked out Safehaven two years ago but found it wasn't quite right for Zoe. Since then, Safehaven has hired on new staff and has students come in at various times to provide activities. While Zoe was there earlier this week, she made a flower pot and went on a walk outside to the local mall. They also did a great job of letting Zoe spend lots of time walking around and exploring. Zoe is better able to clearly communicate her wants now which makes it easier for them to understand what she needs. All of the workers commented on how much Zoe loves walking and being active and does not like spending a lot of time in her chair. They were also amazed with the amount that Zoe eats! We tried to warn them about her eating so they would not cut her off early and leave her hungry. Apparently Zoe clearly indicated she wanted more to eat and they were surprised how much she can pack away for such a little girl.

I felt very emotional about leaving Zoe at a respite place. While I know that we need respite and I do not feel guilty about taking it, it is hard to constantly look to strangers for this support. We have a great respite worker who comes to the house once a week. And Zoe just had a nurse start coming a couple hours twice a week. But even with that, it does not allow time for things other than getting things done around the house, grocery shopping, etc. Like today- the respite worker is here and I will be finishing our taxes. Not exactly a relaxing afternoon! We have gone away for an overnight a few times with past respite workers but it gets very expensive. We have to pay the respite worker plus hotel and eating out costs. Safehaven is partly funded by the province and there is a very small fee ($20 a day) for families to pay. Much more affordable than having someone here at the house.

I know as Zoe grows older we need to look for places like this more and more. Right now Zoe's physical care is very taxing on me. I am nine months pregnant this week and continue to have some minor issues which lead to me feeling dizzy and fainting. Which makes Zoe's care that much harder. Gavin has been doing most of her physical care and I can see the strain on him. Sure, Zoe is a small person. But try lifting her hundreds of times a day, feeding, bathing, changing her, etc. Zoe's care will only get more difficult the bigger and stronger she gets. She is strong enough to fling herself out of your arms, but not strong enough to sit on her own.

I am very happy that Zoe had such a good time at Safehaven. The last time we tried it (I think in a lot of ways we weren't ready and their programming was a little different) Zoe did not enjoy it at all. So we haven't tried it since. But it is good to know that she had a great time. She was all smiles when we picked her up. She was very tired but I think that is because she never naps as well at new places. There is too much going on and she doesn't want to miss anything. Apparently she slept great at night so that is good.

Accepting Help

I have completely accepted that we need a lot of help raising Zoe. We have learned to ask for financial, physical, or emotional help when we need it. But sometimes I do find it difficult to have so many people involved with Zoe's care. Sometimes I think how wonderful it would be to just stay at home with her and not feel overwhelmed by her needs. I imagine what it would be like bringing her to the park and watching her run around on her own. Or telling her to go play while I clean the house. I imagine the sounds of the occasional family guest or friend visiting rather than the constant workers coming in to help. It has been difficult for me to admit that I can't give Zoe everything she needs. As a mom, that is a hard thing to know about yourself.

Then I tell myself to suck it up. How lucky I am. Zoe does go off and play in her own way. And at least I live somewhere where help is given to us at a low cost. Everyone needs help in raising their kids. That comes in different forms and every way has different obstacles. So, I know we are lucky.

Plus Zoe is a really cute kid so she sucks in people who want to help. The Safehaven staff were very disappointed we were picking her up after one night. Most parents leave their kids for a week or two at a time. Next time I think we may try two nights, but Zoe is a bit young yet for a longer stay. She did make a friend there and had fun rolling around on the mat grabbing his toys and him grabbing hers. So hopefully she will continue to have a fun time there.

In the end that is what matters- Zoe is getting what she needs. And there is no human out there who could possibly meet all of Zoe's needs without completely burning themselves out. Yes, I am a super-mom, but even superheros have their limits.