Be thankful for what you have

That's the point of Thanksgiving right? To be thankful for what you have, to enjoy your family. Sometimes we forget about that.

Sometimes I'm stressed: appointments, school, specialists, therapy activities and exercises, homework, housework, etc. It gets to be too much, and then I complain. If only we didn't have that appointment I could do this instead. If only Brooklyn wouldn't have a meltdown I could go to the grocery store, etc.

I have a friend who is pregnant with her second child, a little girl. She's due on Valentine's day. She has a little  boy who is almost 6, and he was really looking forward to being a big brother. Early last month her daughter was diagnosed with a fatal neurological defect called Anencephaly. This randomly occurs when the top of the neural tube doesn't close, the top part of the head and majority of the brain fail to form. There is no cure, and no chance of survival. In the most perfect of situations Anencephaly babies live for a few weeks, maybe a couple of months. Most commonly they live minutes to a couple hours after birth, if they aren't born an angel.

This friend is currently in labor to delivery her precious baby angel right now. My heart is broken for her. I know how much she wished for those next few months to feel her little one growing and kicking her in belly. And it makes me think of my kiddos, of how lucky I am to have them. As much as my girls require a lot of care, their disorders/conditions aren't life threatening. My children will be here tomorrow. My friend, she'd probably give anything to be in my situation.

Putting things into perspective... Sometimes we all need a little reminder.

Emilee, Will, and children, you guys are in our prayers. Love to you all.

If you'd like, you can follow Emilee's story at http://babyleilagrace.blogspot.com/

The moral dilemma of SSI

Morgan and I are discussing applying for SSI for Alayna. She had it when she was a toddler because of her eyesight, which helped with the process of going to appointments and affording special food due to her developmental delays. She became ineligible because it was not pursued later. There were issues with the need for SSI that we won't go into in this post. Things have changed, and with multiple specialists being sought to make a go at resolving some of the gait and developmental issues it becomes clear that we are less able to afford the cost involved.

But we had struggled with deciding to apply for SSI. And it's a decision many parents struggle with while others just assume as a correct decision.

Our family is pretty conservative. I don't require the government to give me anything, in my opinion. A good example is that, if markets were better and unemployment was lower, many people could probably live without SNAP benefits, or food stamps. Because SNAP revenue generated from low-to-no-income families affects positively on companies like Walmart and, locally, Winco Foods, these companies have higher demand for relatively cheap prices. Thus, they have the potential to increase prices to improve their profit. However, taking away food stamps could lower demand for higher-priced foods, which would drop the cost of those foods to compensate for the market's decline. In essence, the market would adjust, and we could see an overall drop in cost of living. I could probably afford cheap food and survive without food stamps, but it does help to have those available when you really need it, like when you're paying a large percentage of your income to paying back school loans but don't have the employability to afford the added costs.

Note: I am not an economics major, I just took economics in college. Don't quote me or anyone else who analyzes this kind of change, because the modern economy can wield surprising results, as we've seen in almost every standard in the last decade.

SSI is similar, where I don't believe in just getting the extra income because you can. If you live frugally and can afford to do it on your own, you should attempt to do so.

For some, SSI is almost a right, like getting a paycheck for dealing with your disabled child. The connotation can be overwhelming and affect judgement. I have personally known and witnessed families, both in previous jobs and socially, that have used the fact that their kids have some sort of delay or disability to either afford frivolous things or pay their own bills.

I completely acknowledge that having a disabled child has cost involved. I know first hand.

But there are some parents who just apply for SSI to pay their own bills and completely neglect the needs of the child, assuming instead there's nothing to help them and disregarding the potential of beneficial programs from non-profits and the local and state governments. However, I believe this is a minority.

The truth is that there are plenty of reasons to have SSI, some that are not so obvious as affording some sort of monthly nurse aid or similar direct costs. For instance, a child with autism that does not need specialist care but cannot be put in child care due to local childcare options being inadequate or unequipped to meet the attention needs of the child may require the parent to reduce the hours available to work. This would be indirect cost, and would be reasonable facts to support applying for SSI.

However, a child with mental deficiencies that just socially likes their parents and the parent would rather just be at home with the child is not necessarily a reason to ask for SSI. Parental preference, in the arena of public funds, is tough to use as a basis of eligibility. How do you tell two parents that the one who just wants to stay home with the child has the same eligibility as the other who has to stay home for the child's safety?

The moral dilemma stems from whether you're applying for SSI for personal, or personal finance, reasons or if you are going to use the money for your child. It's an honest question that anyone applying for SSI should ask. You may think it's obvious, but there are times that it's tempting to say, "Well, this way I can afford to buy my kid a tablet for education," but really want the tablet for yourself. 

The best way to resolve the dilemma is to make sure you have attempted everything you can to afford the things you need for your child, from looking for cheap deals to non-profits who offer local programs, before accepting SSI. You can also verify you would need the SSI as a basis for decisions elsewhere in treatments. You will feel better about your decision and have a better idea of how to use your SSI benefit effectively for your child.

Sometimes it's all too much

I had a blog all written, I spent the hour of Brooklyn's therapy on Monday to write it all up. All the new things with the girls, therapy, medication, casts, IEP meetings, etc. But, that's gonna be put on hold for a minute.

The title says it all, sometimes it's all too much.

Therapy appointments, specialists appointments, school, homework, therapy activities and exercises. Sometimes it's enough to make you want to tear your hair out while plotting the quickest route to Mexico so that you can run away.

Please don't get me wrong, I absolutely LOVE my children. I could not imagine my life without them. And I don't just love those happy, wonderful, snuggling, moments. I love the crappy moments too. I may not love them IN the moment, but afterwards I get to thinking, "God chose ME to be their mother. God chose ME  to raise them, love them, and meet their needs. If God has that much faith in ME, I should have the faith in Him to know that he made the right choice."

But, I don't always feel that until hours, sometimes even days, after those moments. When Brooklyn's having a meltdown and I can't get through to her, and no one has clean pants for the next day, and all the plates are dirty, and I desperately need to vacuum the living room, and Alayna has homework that needs looking over, and someone needs to make dinner... All I can think is WHY ME? I am SO not equipped for this. God, I cannot be the mom you, and these kids, need me to be. It's too much! I can't do it, and I quit.

I never do actually quit, but I gotta tell you, sometimes a tropical beach ALONE sounds pretty damn good. And, since we're dreaming here, lets add in an unlimited supply of some yummy tropical drink, heavy on the rum.

And my stress doesn't just come from making sure Alayna and Brooklyn have their needs met. I also have to meet the needs of a demanding 4 year old, my sweet sweet Bella-boo, but also my amazing and oh so sensitive Aiden. My poor boy that gets told no for most of the things HE wants to do because I don't have the time or the money to let him. And he's so sweet about it, even though he's disappointed that I had to say no, AGAIN, he understands. How I got so lucky with him I'll never know. I may not say it enough, but I thank God that I was chosen to be his mother. I'm so proud of him and thankful that he is the young man he is.

I've spent the last few weeks worrying about money (Brooklyn turns 6 in 4 weeks, Christmas is coming, gas too and from appointments, etc), stressing about time (12-13 regular monthly appointments, school, keeping up on the house, etc), and otherwise just in a poor mood.

But, tomorrow is another day. And I have 4 of the most amazing people in the world who depend on me for just about everything. So, thank you God for giving me these blessings, and help me to remember how lucky I am to call them my children. Especially when I'm tired, Brooklyn is having a meltdown, Aiden wants to play video games, Bella wants to pick a show on Netflix, Alayna needs homework check and oh so conveniently forgot about a project that's due soon, and dinner needs to be made. Because, Lord, I can promise you, that's about the time I'm going to need that reminder.

Silly time with Asante and Bella

Visiting Whitney's apartment, watching my nephew, Asante, and my niece, Shyla, and we're getting silly. Faces are awesome, though. Silliness comes out of your face.