It’s been 6 months since we had a doctor tell us that our daughter was mentally retarded. What a long six months it has been. We’ve been to the Children’s Hospital here in Singapore countless times, we’ve been back to the US to see specialists there, we’ve looked at schools and therapies for Edda. We considered moving back to the states, we’ve been confused by different doctors and missing test results. How quickly the six months has passed as well.
Many people have talked to me about grief and crying. I have found myself crying many times in the past 6 months, most often in the middle of the night when the house is quiet and everthing is dark. It is then I don’t have shrug my fears aside and the magnitude of Edda’s disabilities sometimes overwhelms me.
Since my dad has been here, I’ve left Edda at home a few times so I could visit friends with Vince. My dad is great with Edda, in the afternoons, she needs to nap and eat frequently. I hate to admit it, the visits were easy with just Vince to manage. Vince does have his own issues (don’t think he is an angel every moment), but Edda is unpredictable with her moods and awkward in strange places and when she is pissed, it is often hard to console her or figure out what she wants. Each time I left Edda behind, Vince asked why she wasn’t coming. I felt bad for leaving her behind. I know in the future, our family will be splitting up trips and activities. This is almost what pains me the most, that we can’t do absolutely everything that I thought we would be able to do together, but perhaps this is an unattainable fantasy for even completely non-disabled families.
Vince and Mathilda playing. Where’s Edda? Not around.
You CANNOT feel guilty over leaving her at home sometimes. Trust me, even with two “normal” children, I prefer to only have one in tow when running errands, etc. They are angels alone, but feed off each other and can be horrible together.
Plus, Vince needs your time too – one on one.
SP8
Edda needs special attention almost all the time. But Vince also needs special attention sometimes. We all do. Just Edda demands more and most likely she will get prioritized rsponses because her conditions.
With Edda, life definitely is going to be different. Everyone in our family would like to help and try to do their best. But, I also hope that beside Edda, there are Vince and many others in the family including me that they can have their times-off and concentrate on their own needs.
To fulfill Vince needs – one on one as mother is as important as taking care of Edda. To be with Jeremy – one on one as wife, is also important.
Just as the anonymous said “you CANNOT feel guilty over leaving her at home sometimes”.
It’s funny to hear you say that, because I’ve always been amazed by how much you guys do in terms of going out and travelling as a family. The last time you were in LA, Josh and I were so impressed by how easy going the kids were. I can’t imagine being on the road that long with kids, and you guys did it splendidly!
I can only speak from my own experiences as an observer with situations like Vince and Edda’s. The kids I’m around that have siblings that are challenged tend to be more tolerant and compassionate and most importantly, comfortable around their siblings and other kids not considered “normal”. There is a lack of discrimination coming from these kids and that to me is a huge plus. As for not doing everything as a family, that would change with or without Edda being challenged. I see that everyday with little brothers and big sisters and big brothers and little sisters. But I don’t think there is anything wrong for wanting to stay together as a family and grieving because that may not be the case all the time. I think that is a valid and very realistic grief. All families deal with it. Challenged kids or none.
Every one has a limited time and energy to do things. As long as we tried our best, we have to leave to the “God” or “Gods” for the rest. I agree 100% it is not easy to be a mother especially with challenged kids. Although I worked at office weekdays left kids at home with babysitter was not my choice but necessities. In this case, I have quiet time concentrated on my office works and I can spend most time with kids during weekends.
I just wanted to let you know how much I look up to you. I probably don’t know even half of how hard it is to be a mom, but you’ve done such a wonderful job with your family so far. You guys are pretty much the epitome of what I think a loving household should be like. Sure it’s not all smooth sailing as being super grumpy runs in the family, but yeah… It’ll be good to see you guys next week..
You guys are the best!
Thanks for your encouraging remarks..