But we still love her.
**Sent from the land of Android via Verizon and my Incredible.
This morning we dropped Braska at school and I had planned on going home to attack what has become a disturbingly messy house. (Like for real bothering me, dirty, beyond just regular kind of messy. I don't like it one bit.)
But Kinlee wanted to "go somewhere" as she often does. It was so gorgeous out, and sunny, 60, seemed wrong to be inside. So I said, "Yes, we can go play." We headed nearby to a favorite park with a great playground. Though she was bummed it was empty, and I was plain shocked that there was no one there, she had a great time running around, climbing, and swinging.
She saw the bridge nearby that leads around to another part of the park, with ponds and gazebos and trails of flowers. So I said, "Yes, we can go on the bridge." And we walked for a while, she ran ahead, and we looked at geese and flowers and enjoyed the breeze.
Kinlee wanted to go over by the waterfall, so we did. And she asked if she could climb down and "touch the pond" which would normally be a No from me. But I said, "Sure, just hold my hand so you don't fall."
As we walked back around to the playground, she said, "I miss Braska." It was kind of sweet. Her big sis really is her BFF.
She played a while more, but was SO excited to see a couple of little girls coming over to play. She ran around with the older one, while grandpa pushed the other in a swing. They ran and played like crazy. KiKi is not a loner at all. She loves having buddies.
I was so impressed at how many times I heard "oh, excuse me" or "are you ok?" when her buddy tripped. She made me so proud when she refrained from going up the slide the wrong way when her friend did, running around to the appropriate entry. Twice.
Some other little ones arrived, much younger, and I warned KiKi to be careful. Her friend had some less than thoughtful interactions, but Kinlee stayed right on what she knew was expected of her. She behaved so very well. I was really glad to see it in the midst of crazy playground fun time.
So when I finally said it was time to go, and she obeyed nicely by saying goodbye to her playmate and walking to the car, I said,"Sure!" when she asked if she could have a snack. I praised her for her behavior, pointing out when she made right choices even when her friend did not. She was so pleased to know she did well.
And the biggest Yes of the day, even without being asked (because this never happens so she wouldn't think of it) was to take her to DQ and let her pick a mini blizzard for a special treat. She chose what she wanted, which happens to be my fave mint oreo, and we sat outside and she enjoyed it. For about 6 bites. As is her norm with sweets since she is rarely allowed them. And when she then asked if she could be done, I said "Yes, if you are full of ice cream." She said I could have the rest. Enter the "no thanks" moment of the day. Much as I would love it. Much as it killed me to drop an almost full mini blizzard in the trash, I succeeded in refraining completely.
Then we got in the car and headed home. Out of time for much cleaning, unable to accomplish many tasks before pickup, but with a satisfied little girl. At least for a few minutes.
I need to learn balance my no tendencies with my yes moments. Today was a good blend. Proper behavior was not lost for the sake of silly fun. Ice cream was enjoyed in moderation by choice. Win-win.
**Sent from the land of Android via Verizon and my Incredible.
We’ve known about World Down Syndrome Day for a few years, but this is the first time we made it a point to do something. To celebrate. I just decided we were going to make it like Father’s Day or something… a holiday to be appreciative for DS, to tell others all about how it’s blessed our lives as a part of Braska’s influence.
We did several great things… but I’m more than exhausted. I was up til 2:18 am this morning getting things done, and I really am feeling the need for sleep hit hard right now.
Hope you did some fun stuff…
Cheers, WDSD. I think we’ll enjoy you much more from now on.
We’ve got some GREAT stuff planned for today. That might be why I’m still up (and needing to get to bed soon!) at 1:40am. But it’ll be worth it…
Tell someone about something great you know about Down syndrome today. And if you, by chance, aren’t sure what to tell them, just share how great my sweet little button of a girl is!
Some late breaking news!
From an email I sent just now….
I just thought I'd share that Braska's button came out tonight, and after some very quick discussions, nervous glances, and shrugs, along with a call to the nutritionist, we decided to leave it out. Be done. Move on. Call it good and keep on walking. And I'm a little anxious, I admit.
More details over there at her place…
Wow. *That* day really is here.
Does anyone else have just about NO luck getting the kids to look at the camera??
I’m not a fan of pictures with me in them, but I would like to have some with me and the girls, so I try to get them occasionally. But this is the best one out of about 10 we took. Is it just *that* hard to look at the camera and smile for like 3 seconds??
And it’s not like there was anything on the deck that they were looking at… just avoiding the camera, I think.
I had a few questions after this post about how our special needs trust went. So I’ll try to answer them before I forget any longer! (Remember, I’m not a legal ace. This is just my experience or opinion expressed.)
How much did you have to pay the attorney to setup the special needs trust?
Our whole process cost us $2300.* The attorney we used, who we highly recommend if you’re anywhere near where we live, allowed us the option of paying over time if we had needed to do so. The MetLife guys don’t bill at all. There’s no charge for their services. If you choose to update life insurance or investments through them, then they get a small percentage from that company.
*We chose to go the more expensive route. This cost was for both wills, a family trust as well as a special needs trust. And Braska’s trust is a “self-standing” trust, which requires a bit more legal setup. It means that the trust exists right now, instead of becoming an entity upon the death of both parents, as is common. We chose to set it up this way so that friends and family who have wanted to give Braska gifts of money or bonds or who would like to name her as a beneficiary in a will or trust can do so at any time. This also means that the funds are available to be used as they are given if we would choose. As long as the funds from her trust are used for HER care, they can be used now or managed and invested to be used later. Her trust has it’s own tax ID#. Without this option, a more basic (but still SO necessary!) special needs trust with the accompanying wills and documents can run from $1800 to $2300 depending on several factors. Some attorneys I’ve heard of charge as much as $3500 for these services. It’s most important to have attorneys and financial advisors who know the laws and are current in this very specific type of trust! I can’t emphasize that enough!
Can’t we just have a regular will and then let all our loved ones know about what we want to happen after we die?
Um, no. That’s a bad idea. Really bad. The experts have been more than clear about this in each workshop or meeting we’ve had. Wills and estates go through probate, which can take lots of time and cost money from the estate. And that allows people who are not YOU to be involved in decisions about your assets and your children! I am NOT an attorney, so I won’t try to explain all the ins and outs of this situation, but let me strongly encourage you to NOT let this be where you end up. We were really surprised to learn all the strange nuances of how the courts handle wills.
M and I have come to believe pretty firmly that anyone who has any assets and/or children needs to have a trust. Not only for special needs. As we understand more about how the legal process works after death, trusts are not at all just for people with lots of money. A trust spells out what you want to do with things, and when set up right, ensures that it will actually happen that way. And as I understand it, the trust flies right by probate completely, so there’s no hold time on when things can begin or continue after the passing of the parent(s). And a basic family trust is not that expensive at all, totally worth every penny for the end benefit!
Do you just split everything evenly between your girls, even though one has special needs?
This is, of course, different for each parent, in what they feel is important for their kids and depending on their unique situation. For us, we did NOT divide things evenly, we set it up that Kinlee gets 20% and Braska’s trust gets 80%. Does that seem unfair? We feel like it’s the most fair thing we can do at this stage.
Let’s say when we die $1 Million is in the family trust. The family trust will pour 800K of it’s value into Braska’s special needs trust. That money will be managed by the trustees we have named, including a corporate co-trustee (a trust company who will assist with taxes, bill paying, and being another eye on the appropriate use of the money). But unless other people decide to leave money to Braska’s trust, or if others decide to give her monetary gifts at some point in her life, that money will be what she has to live on. For the rest of her life. Yes, she may earn an income, and we hope she will. But the reality that she will be able to make a living that would fully support her is unlikely. So if we happen to keel over next year, and Braska still has 50+ years ahead of her, 800K doesn’t really sound like so excessive an amount. $16,000/year? Of course, we hope that investments and proper handling would increase that amount, but we don’t want the guardians of the girls to be put in a difficult financial position when they’re doing us the greatest service by caring for our girls after we’re gone.
On the other hand, we fully expect Kinlee to be able to support herself financially. She will have unlimited earning potential, as far as we’re concerned. So while we would not choose to give her zilch, we also want to make sure that she is not financially obligated to care for her sister, so 200K would be fine with her, I’m sure. We hope and expect that they will be involved in each other’s lives closely, but we want to make sure that Kinlee is not under financial pressure to provide for her sister. The experts have said frequently, and we agree, that siblings are not mad about their sibling with special needs receiving a higher percentage of an estate because it frees them to care for their own lives and families without additional financial stress.
How much money do you want to have in your trust in the end?
One of our MetLife guys said this best. “Is ANY amount really enough?” He said that for his son, who has special needs that require more constant care and much more medical assistance than Braska does, he will not be able to have “enough,” in truth, but he will work hard to provide absolutely as much as he can. That’s all we can do. As much as we can.
In our house, this means that financial independence as a family is very important. We have it as one of our highest priorities to become more financially secure every year. Since our family income is definitely in the lower section of the growth chart, it takes a great deal of determination to bring this about. We have our eyes on the long term. We are working to pay off our house debt, which will make us completely debt free. We buy cars with cash, and with very little cash available, that means we drive well-used cars. We don’t have a credit card, and we have a very small, strict grocery budget each pay period. These are not popular things to do in the society of “buy now, pay later,” but we have decided that it is our responsibility to be sure our girls are not financially dependent on anyone, debtors, government, or even family, if at all possible.
Choosing to make this a priority has changed our lives a great deal in the last 5 years. And I don’t always walk around singing the praise of frugality, trust me. But I do believe in the end goal. To provide as much as we can for the girls’ financial stability when we’re not there anymore, and to teach them both that our responsibility is to live within our means, no matter what. And if that means that they don’t get to hit McD’s every time Kinlee wants “nuggets and fries”, if that means that we don’t get to go on trendy trips or vacations, or if that means that we live in a house that’s about half the size of what we’d like to have, so be it. We’re beyond blessed with family and friends who share generously with us, treating us to dinners out right when we need it, or bringing cute stuff for the girls to wear. Hang out with my girls for a few hours and tell me if you think they’re deprived…
Enough for now! Next we’ll address this one… “Why do I need a trust if I don’t have any money to leave anyway?!?” If you have more questions, just ask!
It’s become kind of a weird little thing… the members comments on my hair when I’m working. I find it beyond strange that so many people even notice my hair on a given evening. But they do.
When I wear my hair down—which I do NOT like to do—it is like I dressed for prom or something. Men, women, teens, little kids… they all have to stop to tell me how much they like when I wear my hair down. Every time. It just makes me shake my head.
Here’s a snap at work that someone took one night that it was supposedly “smokin’.”
But today, as I whipped up a 3-minute ‘do this morning that kind of slowly unraveled through the day, by the time I got to work at 5pm, it was nothing I thought was all that celebration-worthy, but the rush of the afternoon didn’t really allow for adjustments.
I was apparently wrong. Adjustments were not needed. The hubs mentioned before I left home that he liked it, which is rare, so that was nice. Then when I got to work, it started immediately. “What a great look for you!” “Your hair is so cute tonight.” “I wish I could do those cute styles, it’s adorable.”
Granted, I am the first face and the last face you see as you enter and exit the building. But you’d think with iPods playing in ears and workout gear to carry and kids with post-swimming hair dripping they would not have the means to notice the hair on the girl at the front desk. Even if I DID actually attempt to make it that noticeable!
But it was a hit. And I bet I can’t even do it again if I try. It was one of those freak hair events, I guess. But oh well… someone decided I needed to strike a sassy-face pose, which is funny, because this is not a face I’d actually be wearing while at work. It’s all about smiling time, big greetings for the members, calling them all by name (which I’m famous for and that one I’m proud of. more than the hair thing.)
So I give you me as the Sassy Y Lassie… doing the “Pocahontas braid”. Didn’t know there was a name for this.
Gosh. Whatever. I’m thankful for the encouragement, but it’s just still a tad strange. I mean, I look at that picture and see a very odd look on someone whose hair is clearly falling out of it’s intended place.
Guess I’m glad that these lovely members are so gracious. And I’ll just go with it. It could obviously be much worse!
There are alot of things I thought I'd be, alot of things I hoped I'd be, and many things others want me to be...but I'm just RK.
This is simply a place where I organize my thoughts on life, circumstances, trials, and victories.