Some Days...

Some days are harder than others. I know this isn't news to a lot of you. But sometimes I just want to go on vacation. Being a single mom wears on you. Having a special needs child wears on you. Today was one of those days. Well, actually it was like the whole weekend.

It started because Little Man was going to his dad's. We technically don't have custody orders, but he has been going every other weekend. After just talking to him, it always makes me uneasy. Probably because we don't have orders and he is trying to fight me with what time he brings Little Man back. And of course, he doesn't even ask about Princess. He brought Little Man's play house that he got for Christmas near his first birthday. He told me that he cleaned it up because he thought Princess would need it soon. Yes, Princess is 7 and a half months old, but she's not rolling over all the way, nor is she sitting up. She's nowhere near ready to crawl. In fact, that's one of the things I would hope she is doing by her first birthday that we are going to write in her IFSP. He has no clue because he hasn't spent any time with her.

Then it was followed by my hair stylist cancelling on me. Okay, I knew her son was sick, so it was iffy as to if she was going into work anyway. But she thought she had pink eye and she didn't want to give it to me to then in turn give it to Princess! Yeah, that didn't really hit me until tonight. I mean, sure she doesn't want to get any of her customers sick, but to be thinking about Princess, it just kind of hit me. Someone else was thinking about my little girl.

Then today was World Prematurity Day. Princess got to wear my favorite outfit because it was purple!

Things were fine. That is until I nearly forgot to give Princess her medication this morning. And then this afternoon, after Little Man came home, I went to give Princess her afternoon meds and I mixed up the doses! Oh my poor little brain can't take much more. It didn't help that Little Man came home in tears from his dad's. He was just sad. And it doesn't help that Princess is having a difficult time burping after her bottles because she literally falls asleep during them, so she wakes up screaming. I have ALL of Princess's bottles to wash before her bedtime bottle. I'm just so not feeling like doing ANYTHING right now. I'd like to just run away on vacation right now.

For all of you who look at me, or read this blog, and go "I could never handle all that" or "You handle it all so well," please remember that there are days that even I don't want to get out of bed. And surprisingly, those are the days that probably would seem like a normal day to anyone in my shoes. The days like what happened during the Crazy Nightmare Week are usually the days I'm okay with everything, even if things frustrate me or worry me so much I want to cry. The days that seem the most mundane, are the ones where I want to just stay in bed and not do anything.

Shut-In Saturday Week 7: Appointments

Even though Princess is shut-in and can't be around crowds, she still has appointments she has to go to from time to time. This week, we were off to the cardiologist. I finally remembered to take pictures! Probably because he was running behind. I almost expect it now because he sees so many and he literally has them back to back. Not to mention it was the insurance nightmare mess for some. Thank goodness Princess has CCS! So I snapped a couple of pictures while we were waiting for Dr. K.

All was good. We don't have to go see him for another 2 months! This is a VAST improvement because when we started seeing him 4 months ago it was weekly. Sometimes having a diagnosis, even the diagnosis we have, is a good thing.

We also met with J, our developmental specialist. Next week we write our plan for Princess's development. So glad this is something that gets to be done in the home. I know it will help her. It kind of got me thinking about things when I was giving J all our information. It actually got overwhelming. When you sit there and list EVERYTHING that Princess has had happen and all that is going on, it's pretty overwhelming. I guess that's why I don't do it so often and try not to think about it. Sure, thinking about the PHA2 is an almost daily thing, as we have medication because of it. But I don't really think about the milk protein allergy much. Or the eczema and sensitive skin. Every so often I think about the heart condition. But I'm okay with it all.

Okay, enough of that, here's more pictures:

Princess and Pops fell asleep on the couch together. Managed to get that one.

Then there was the picture of Meme and Little Man.

And then, last night, Princess was so sleepy, she fell asleep in the walker. Believe me, after the no sleep day we had on Thursday, she NEEDED the sleep.

We got her Bumbo Tray today. So she got to sit up in her Bumbo and play with toys on the tray! Makes things so much easier.

And then we installed the convertible car seat in Meme's car. Now the infant carrier/car seat can just stay in mine. So of course we had to take it for a test drive to make sure she fit well in it. Princess loved it! She got to sit up more and look around!

And here's one of Princess just sitting up on the table. Just because.

Oh, I hope you noticed the new page at the top. It's our awareness ribbons for Princess. I'm still looking for one for the heart condition. I may not find it. But just as a reminder, tomorrow, November 17, is World Prematurity Day. Wear purple for preemies. By reading this blog, you actually know TWO preemies!

I am a Welfare Mom

I'm a Welfare Mom. I'm not afraid to admit it. I made a choice and wound up on cash aid and food stamps because of that choice. What choice did I make? To get out of an abusive relationship. I am currently unemployed and cannot work, due to Princess's sensitive immune system. As a result, we have to have cash aid and food stamps to help us out.

The reason I'm writing this post today is because every so often there is the call for drug testing for those applying for cash aid. I am totally against this. Why? Because applying for cash aid already had SO many hoops to jump through, why do we need one more? Because there's already enough of a stigma of applying and using cash aid, why do we need to add to it? Because there are many reasons as to why someone would need cash aid and/or food stamps, why do we need to delay it for them longer? Let me elaborate.

1. Do we need more hoops to jump through?
Usually this idea for drug testing is started by someone who has never had to apply for federal/state aid before. Then it spreads. If you have ever had to apply for any type of state aid, then you know how much stuff they want to know. It's not just your income. When I applied for food stamps and cash aid, I had a whole STACK of papers. Some of the things they needed were:

• Pay Stubs
• Bank Statements
• Vehicle Registration
• Birth Certificates
• Social Security Cards
• Rental Agreements

Plus I had to apply for unemployment, AND they needed my kid's shot records! And even then, I still had to go down and write a statement about the three deposits that were done in one of my accounts and how they are no longer being deposited into that account. I also had to be fingerprinted and photographed.

The state has 45 days from the time of the application to determine eligibility. Do we really need a drug test on top of all of that?

2. Do we need to make people feel bad for applying?

People crack jokes and make snide comments about people being on welfare. You hear it all the time. Not to mention, people feel bad for having to ask for help. Most people on welfare don't want to be there. They want to be able to provide for their families. Some people don't even apply for food stamps and/or cash aid because they are afraid of what people might say. Some people don't know that they could qualify if they applied. You tack on a drug test and to some people it's an accusation. It's not accusing anyone, but to some, it can feel that way on top of feeling bad for asking for help.

3. Does it need to take longer for those who need it?

There are lots of reasons people need help. I'm college educated and could be out there substitute teaching if I could, but I can't. My daughter has special needs. If she gets sick, she is more than likely going to end up in the hospital. I can't put her in a daycare for that very reason. I'm on cash aid because I left an abusive relationship. There are families on cash aid and food stamps because they can't find a job. There are families who are on cash aid and food stamps because they are foster families. It took 30+ days for my cash aid and food stamps to be approved and to be loaded onto my card. When it finally hit, I cried. I had spent 7 weeks relying on my family for a place to live, food to eat, and diapers for the baby.

Some of us these days are living pay check to pay check. If we miss one pay check, we go without food. If we miss two, we're homeless. Look at the recent government shutdown. It was 17 days that some people had to work and not get paid for right away. Some people were initially told not to come to work and they weren't getting paid at all. Not having money hurts. It causes stress and worry. 

There are people who abuse the system, don't get me wrong. But it's those people who do that that give the rest of us honest people who really need cash aid and food stamps a bad reputation. If you know of someone who is abusing the system, report them! We are not all drug users, alcoholics, or trying to get a free handout.

So the next time you're behind someone in line who has to pull out a benefits card to pay for their groceries or their kid's clothes, don't judge them. Understand that they are in a difficult situation. They may be wondering how they are going to make the food that they just bought last till their next award comes in. They may be praying that their kids don't outgrow the clothes they just bought knowing that they aren't going to have any more money for new ones until the first of the month. Understand that times like Christmas and birthdays are hard because they can't buy their kid that really expensive gift they want because there other things that need to be taken care of first. Realize that they may be in a difficult situation through no fault of their own. They are trying to get back on their feet and when they do, they will no longer need the help. They are simply doing the best that they can with what they have been given. If you are able, help them out. Believe me, they will welcome the blessing.

God Takes Care of the Faithful

"For the LORD loves the just and will not forsake his faithful ones." -- Psalm 37:28 

So by Wednesday of last week, I was ready to just crawl back into bed. It had started the previous Friday. You can read about it here. But by Thursday, God was blessing our little household.

After the nightmare that was the insurance and the nephrologist's office, I decided I had better call the formula provider just to make sure things were going to be okay. Plus we hadn't gotten our formula yet, so I was a little concerned. Yes, the account was flagged because of the new insurance. But the lady on the phone was SO AWESOME. She said that I would be getting a shipment in the next day or two. It would either be the full shipment or two to three cans to keep us in formula until it cleared. Friday, I had the FULL SHIPMENT of formula! Praise God!

Also on Thursday, my food stamps and cash aid FINALLY came through! I was going to call that day, but opted not to. Instead, I checked the website, and lo and behold there was money on my card! The entire food stamp benefit didn't hit until the next day, but I figured they back-dated everything to the first of November so I got a week's worth of food stamps and then on my actual award day got my full month's award. And the cash aid was back-dated two months! It felt SO GOOD to go to the store and buy Princess diapers without having to rely on my parents! I did have to find an ATM to withdraw money from the card to put into my account, but that wasn't too difficult.

There was one thing on Thursday that I was a little on edge about.

About three weeks ago, a lady came out from our local regional center to assess Princess for services. I heard back from her on Thursday. She had presented Princess's case to the evaluation team and they agreed that Princess would qualify for gross motor and communicative services. It took me by surprise. It took me a couple hours before I posted it to my Facebook. And then I couldn't really grasp why people were saying it was a good thing. I guess it was because my brain went to "Oh God, yet another thing on my plate to schedule around." And then my brain went to "What did I do that caused Princess to need services? Can I really take care of a child this special?" But these feelings didn't last long. I realized that this was a good thing. This was why we had been referred to the regional center in the first place. After having spent two and a half (almost three, if you count the additional admits) months in the hospital AND being born premature, she was at risk for going to have developmental delays. We are already set up with the hospital's high risk clinic in February for that very reason. So this is a good thing. She's going to get the help she needs now and hopefully, down the line, we won't need more help.

Let me explain the differences between what we are doing now and the hospital clinic. What we are doing through the regional center is free of charge. It's done through the county board of education's early intervention program. (School districts would like it if you took advantage of early intervention so that your kid won't need services, or as intense of services, when they got to school. Granted, not everyone's issues will be resolved with ONLY early intervention, but starting early is the best thing!) What we are going to do with the hospital clinic in February is to find out if she is going to need additional therapy that would be covered by the insurance. So, this means we will be on an Individualized Family Service Plan (IFSP). It's like an IEP in school, except it's for kids under 3. I already heard from our developmental specialist, J. He's going to come out next week to meet Princess and myself. I also received the observations from our intake coordinator. I can see why J is going to come out. whereas I agree with most of what was said in on the assessment, it was almost a month ago now. Things change SO FAST with babies. They may not be doing one thing one day and the next, like magic, they get it! For example, when I initially spoke with our intake coordinator on the phone to set up the home visit, I had told her that Princess wasn't rolling over at all. Later THAT SAME DAY, Princess decided to roll over from her tummy to her back. So thankfully, J is going to get to see for himself what Princess can and cannot do. The following week, we'll sit down with our service coordinator, M, and write the IFSP. It'll be valid for a maximum of 6 months, so essentially till Princess's first birthday. Of course, anyone on the team has the right to reconvene the IFSP team and revise it at any time.

So, even though the week started off as a nightmare, it ended with lots of blessings. God has said He will take care of us.

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."  -- Philippians 4:6

 All the Glory goes to God. He is the one that will take care of what we need. I don't need to worry about things. And when things get to hectic, I know that it is just God reminding me that things aren't always going to be easy, but He is always there.

Shut-In Saturday Week 6: Crazy Blessings

How has it already been 6 weeks of being shut-in?

This week has had some pretty crazy stuff happen. First of all, I was helping Little Man make his bed and I happened to glance underneath the front corner next to the nightstand. I see used tissues under his bed. So I proceed to make him dig them ALL out. This is what I found:

Yeah, pretty much for the past 6 weeks, he has been shoving his used tissues behind his bed. This is about a box worth, I would say.

Then Princess decided to sit up almost by herself!

MeMe was playing "sit-em-up" with her and every time she sat up, she would latch on to MeMe's finger. Save for the mouth on her finger, Princess was sitting all by herself!

Then Wednesday was the nephrologist appointment. You can read about why it was crazy here, along with the other crazy nightmare things that happened this week. But on the way back from that appointment, I got this picture of Little Man:

Later that day, he got to do his favorite thing of the week: bring in the trash can! He likes the trash can here because it "shrunk" and he can bring it in by himself. This happens every week, but I finally managed to get a picture of him doing it!

Then I managed to get Little Man to write his letter to Santa:

You can read more about it here.

Then this evening I caught this little blessing:

Little Man was reading to his little sister! I promise a post tomorrow or Monday on the blessings that occurred this week, because there were a few. But until then, here's a few more pictures of Princess. Here's one of her loving on her sock monkey:

And then just another one of her:

Until next week!