95% percent of the time I feel ok about our situation. I think that’s the part of me I try to show here on the blog. However, there’s that 5% of my time where I doubt, grieve, throw a little pity party, etc. over everything going on.
Today was one of those sad days.
Normally, I wouldn’t come on here and say, ‘Hey, I’ve felt like crying about a handful of times today.’ But I realized the reason I do this blog is not just to keep people up-to-date on Damian, but also as an outlet for me. Through it I’m able to release a bit of the pain and encourage hope within myself and maybe even others of you out there who are going through a hard time.
I quoted Thoreau at the top. It’s a weird quote to love, but I do. I guess it inspires me to not be the (wo)man who lives this life of quiet despair only to die with so much potential left in me. Today I felt like I had no potential, that the weight of this burden was more than I could handle. I felt desperate and cheated out of a normal life. I was angry that my poor baby boy could still lose his hearing or develop Autism. I was grieving the large family I will most likely not get to have because adoption is so expensive, and I’m not sure I’ll ever be able to overcome the fear of having another child with SLOS and thus may never try to get pregnant again. And as I started wallowing, the standard “why me God?!” came out.
Pain is part of the human experience. Bad things happen, but we try our hardest to avoid them. Inevitably though, at some point in our lives, we are challenged by something that hurts. Be it physical or emotional, I don’t think it matters what the cause is, the effect of it is the same for everyone–it finds a way to consume us. From my Christian perspective, we all have our cross to bear. I believe God chooses people to handle certain things because He knows they are capable. I also believe He provides us assistance if we ask and through this we are brought closer to Him. But regardless of a belief in God, I know that the human person is adaptable. And this is where I find Thoreau’s quote useful.
We all have a song inside of us. We all have a desire to live and survive and that alone should give us hope. I can make it through this, not because I’m special but because I’m still alive. And as long as I’m alive I know that this desire within me to continue living will help me find a way to do so. At the most fundamental level, I believe that’s what hope is. And I think we all possess that power to hope–to wake up each morning, say today is a new day, today can be better than yesterday. We don’t have to be bogged down by the details of the situation, consumed with the ‘why me,’ or lost in the silent anguish over lost dreams. Instead, we can hope. We can sing the song within us because it would be a damn shame not to. Because we deserve nothing less than hope. Because Damian deserves my hope. And so, as the Easter season is about to begin, what a wonderful time for me to depend on the wisdom of God and my innate ability to persevere in hope.
This is a bit of a rant…
Damian qualifies for medicaid because of his syndrome. Because we don’t fall in the right income bracket, we have to apply through a special waiver program–the Katie Becket Waiver. If he’s approved it’ll be a lifesaver because it would basically work as a secondary insurance covering all co-pays and deductibles, while also getting us free formula, daycare, and prescriptions.
Right when Damian came home, I went down to the Medicaid office to pick up the application packet. It’s large and very detailed and requires a bunch of stuff from the doctor as well. The packet also contains an instruction manual to help you fill it out. (Yes it has to come with a manual so you know it’s going to be a pain in the butt…) Anyway, the first page is a checklist of all the things you need to turn in. The first thing it says is ”Form 94, the Generic Medicaid form.” Under the instructions on how to fill it out, it says to turn this form in first before you get anything else done because the date it’s received is the date your medicaid will start if approved. So we did that. About a month ago.
Today I went in with the rest of my packet. I get to the lady in the window, exact same lady I had seen about a month ago. I hand her everything, and she starts looking for Damian in the system. She can’t find him. Finally we decide I should just fill out another one of those generic forms while I’m there. She pulls out this form and I realize that I have that form in my packet, but that’s definitely not the form the instructions told me to turn in first. The following conversation goes a bit like this:
Me: I have that form in my packet.
Lady: (smiling at me like I’m a moron) Well then you didn’t turn it in already, did you?
Me: Well no, but that’s not what the instruction packet said to turn in first. It said some form that I had to go online for and print off.
Lady: No this is the form.
Me: Well why does the instruction packet you gave me say this other form.
Lady: I don’t know what you’re talking about.
Me: (Giving her a look of ‘you’ve got to be joking’) I realize you probably don’t remember me, but you were the one I talked to the first time and you gave me a packet. I’m assuming it’s the same packet you give everyone applying for Katie Becket. And this packet had an instruction manual in it. And it does not say what you are telling me.
Lady: (still smiling at me like I’m the crazy one) I really don’t know what you’re talking about but you’ve got everything turned in now so a case worker will be getting in touch with you in approximately 20 days.
This is just great because we’re now about a month behind where we thought we were. Unfortunately, there’s not much I can do and it’s not like I really thought this was going to be easy. But come on… really?! I even started to second guess myself because there was no way that this could have been this frustrating, but when I got home it was definitely not what this ‘mysterious instruction packet’ told me to do… Ugh!
Hopefully, we get through this process quickly and then we won’t have to deal with it for another year. I’m not really counting on it though…
doesn’t enjoy loathes bathes. Ever since we brought him home from the hospital, he’s screamed like a mad man every time I try to just sponge bathe him, not to mention give him an actual bath.
Somehow in the NICU they were able to do it without causing severe trauma to him, so I had lots of hope for when he came home the second time. Apparently they knew some trick I didn’t because once again he’d scream.
Tonight I decided after a week of quick wipe downs, the boy needed a good wash and he (and I) were going to have to suck it up. So I pulled out my bathtub, Aveeno Baby Wash and Shampoo, and duckie towel set and then said a quick prayer all his screaming wouldn’t cause him to vomit on himself and ruin this bath.
To my surprise, I think we both enjoyed it! He wasn’t a fan of getting his hair wet, but other than that we were all smiles. He even smiled and sighed as I rubbed his feet with lotion. I guess he’s a fan of foot rubs–I mean he does walk around a lot so I can only imagine how sore they must be
Help us raise money for Damian’s hospital (Children’s Healthcare of Atlanta) by following the blog over on the right!
This weekend my best friend and roommate from college, Emily, came to visit. Let’s just say that we may have some fun stories that Damian doesn’t ever need to hear about from our ‘younger days’–and most of them involve us dressing up…
Needless to say, fun times were had this weekend.
Damian had his first Target experience where he got to try on some sweet shades. We also bought some Bright Starts Teething Rings. Apparently, I got my first tooth at 3 1/2 months. Damian is going to be three months in just a few days and already is showing teething signs–cranky, drooling, everything must go in his mouth. Nate and I are a little scared… I’ll let you know if any pearly whites show up, I’m still hoping that he’s not going to take after me in this situation.
He also had his first out-to-eat experience at Front Page News. We were in luck because they were still serving brunch allowing Emily to begin her celebration of Food Holidays. Saturday was Eggs Benedict Day. You can read about it on her blog Comfortable Home Life. (Warning: All the pictures will make you extremely hungry… so don’t say I didn’t warn you!)