it is serious

I should be asleep right now. I need to be asleep. Really, what I mean is that I need rest. My body, soul, and mind are exhausted. I've done more crying than I care to admit...or can remember. A word, a look...it doesn't take much. I have never felt stress or sadness as I do now. Of course, I have not had to deal with Richie's health issues before. No, not like this.

I can't seem to separate myself from what is happening. I can't allow myself to think the thoughts that have been dancing through my head. I spoke to a woman who had an experience similar to what I'm going through now, and the things she said to me were scary because it's how I feel. She is talking about it now, having survived for almost 18 years. I try to find strength in those types of stories. It's odd the places I seem to be finding strength. I relish, even more, in helping others. Unfortunately, I fear it's a selfish act aimed at distracting myself.

I have sat down to write so many times. I know that I will feel some comfort, some release, if I can just write. My tears fall so hard. I rub the dried salty water circles they leave on my desk and I can feel the pain pushing against my eyelids. I never imagined such an absolute. Richie is so young. He can't understand what's happening to him...maybe that makes it worse. Maybe that makes it easier. If it were my diagnosis instead of his, I would not hurt as much as knowing that my son will always suffer.

I've been told to examine the positives...it's better this than that. I am thankful for those that do not know this pain. I am also frustrated with the responses of those that can't understand. Or don't want to. I have heaved myself out of the denial that I was so comfortable wading in. I can't force anyone else out of theirs. Honestly, I really do believe that everyone will be affected by this differently and will cope in their own ways. I don't have the energy to judge or care how others choose to live. For those of us that have gathered to support Richie, as well as each other, well...that's where my focus lies.

The simple and ambiguous questions popular with tragic events are rising in my throat. I'm ready to scream. I want answers that aren't available. They don't exist. I want to step outside of this nightmare and breathe - if only for a moment. There is a long road before Richie. I hope against all hope that I can adequately prepare him for the life he will be forced to lead.

I think about the kubler-ross model and I can't help but wonder...is there a way I am supposed to feel? If I lack one emotion or feel another in excess, does that offer insight? I can't help but let Richie be my only concern. I would have to make a very sincere effort to tear my senses from being completely wrapped up in him. Even then I doubt I could feel half of what others guess I should be. I can't get angry. That seems to surprise many. Was the diagnosis missed? Is there a person to blame onto, and if so, who? That is form of negativity I just won't give in to. It's not even that I can't feel anger, but I don't think it's fair. Of course, this is all pretty new so maybe I'll get to the machete wielding, vengeance seeking, vindictively reckless stage soon enough.

deposit coin here

Richie has been to the doctor and back a few times already in the week and a half. Next appointment is Tuesday in San Antonio. What time, where, and with whom? This is information I should have, but I do not. I get to retrieve a piece of paper with all the aforementioned vitals on Monday morning. Yes, perhaps not even 24 hours before Richie's appointment. Although I am glad that Richie's pediatrician was able to get him in with a pediatric gastroenterologist so soon, it frustrates me that they scheduled the appointment without asking my input. What if I was not able to make the appointment on Tuesday? Come what may, I would have made it to that appointment, but I am surprised that I wasn't consulted. Especially seeing as how we have to drive to San Antonio.

I am very curious (and more than a little nervous) to meet with this specialist.

just old light

Richie and I have been back in Texas for nearly a week. It was a nightmare getting home, but I'm over it. Not over it enough to share the experience. It's a new week with it's own set of problems.

Richie had his appointment with his pediatrician this morning. First thing, bright and early. 20 minutes after our scheduled time, he was taken in and stripped to be weighed and measured. Verdict? My kids got a big (BIG) head. Not freakishly big, but beyond the average silly looking toddler-sized head. Not a problem. No growth otherwise. I'm not surprised, just disappointed. Not in Richie, or myself, but if you are a mom you know the disappointment I'm talking about. In early morning hours, like now, I can sit here with my lap top and blame myself for lacking the ability to alter Richie's piece of universe to make him a normal, healthy toddler. Thankfully they didn't give me too much to dwell on numbers before the nurse shoved me into another room to wait for the pediatrician to show up.

This part of my day is called waiting.

I thought Richie was going to bounce off a wall and through the window of the tiny room we were confined to. Just as I braced myself for lift-off, in walked Dr. Never-on-time. He entered the room with Richie's chart in hand and open, reading it. Before he even sat down he started asking me questions about Richie's delivery and premature birth. When he is done asking his questions, we discuss Richie's size. He's been teasing us, like he might stay in the fifth percentile, but now he's back in the third. I have always thought that there is a connection between his GI problems, yet undiagnosed, and his compact packaging. I brought up this concern to the pediatrician and got Richie a referral to a pediatric gastroenterologist. I won't be satisfied until there is an answer, and treatment, if necessary. I'm hopeful but guarded.

The day got off to a strange and uncomfortable beginning since Richie's appointment was so early. By the time I finished Rocky Balboa tonight, I was ready to get in bed. I always check in on Richie. Consequently, after dragging my feet up the stairs, I opened the baby gate and walked in to sneak a peek of my sleeping angel. I stepped lightly over some closet organizing accessories that I had left on the floor, to get to Richie's crib. I can't see him, so I assume he cuddled up in a different corner of the crib than usual. Nope.

The baby is not in the crib.

Richie is sprawled on the floor on his back. Just sleeping soundly, on the floor. This is strange considering that I laid him to sleep in his crib. Somehow my little climber got out. The list for tomorrow starts already with (1) checking Richie for bumps, bruises and the kind, and (2) calling Babies R Us to order the Wendy Bellissimo toddler bed guard rail for Richie's toddler bed. It will take 3 to 4 months for the special order item to actually arrive, so until then I will be duct taping my child to his crib mattress. It's a good thing I always close the baby gate at Richie's bedroom doorway since his room is at the top of the stairs. Oh my gosh, I can't even think of if I hadn't. Thankfully he was somewhat safe...ish. I had the baby monitor on and didn't hear a peep out of him, nor a thud. Therefore, I conclude that he didn't actually hit the floor but scaled the walls to bring himself soundly to the floor. Then, being worn out, sprawled out on his back and took to dreaming. I may also be making a journey to the emergency room tomorrow morning if I notice any bruising, swelling, or other injuries. But, I'm sure he's fine. Like I said, my little monkey must have scaled the walls to a soft landing on the floor. I'm going to lay in bed and repeat that for a while.

turn down upside

Yesterday was the barbecue with my grandmother and other family members. I had told my grandma on Saturday that we would show up Sunday at about 12:30. After a heart attack at the first church service, attending the second service, and a couple hours for portraits of Richie and my little sister Ryann, we finally made at 4:00 p.m. Everyone was already there. I couldn't even get in the door to greet everyone before I was hit with a crowd of hugs and strange hands reach out to touch Richie. Richie was really good about being passed around.

I can't, honestly, say that it wasn't strange seeing all my family members like that. What they lack in normalcy they make up for generously with dysfunction. Since my papa passed away, we've been stuck. The whole lot of us, stuck. I didn't realize his extraordinary staying power until we all fell apart without him. When he got cancer, we two steps behind but protected him all the same. Before the cancer could kill him, we submerged him in love. He couldn't take a full breath, but he breathed love onto all of us. I think he would cry if he saw the ash we are. I am. I am ash. Every time I hum my favorite song, photograph a moment, share a bit of time with the ones I love, I wonder what stories they'll tell at my funeral. Will anyone remember my favorite song? Will I die before my dad? Will I bury my son? Will he bury me? With a disturbing detachment, I associate everything with death. How long can tragedy attack this family before we all fall victim to perpetual funeral planning?

All these thoughts were running through my mind as I visited with my family. Since we can't function without him, we are always telling stories about him or talking about what he would do if he were still here. We all kept so much of him alive, and maybe that makes it harder to move on. It's like he is still with us everyday. I look at my grandma, now great grandmother to my son, and wonder how burying two lovers could leave her with a life worth waking up to. I see the mark of misfortune on each of us, and I wonder why do any of us get out of bed in the morning.

Then I look at my son and I remember what a blessing life is.

disconnect

I got up this morning to talk to my mom after she left the ER. Yesterday she was in a car accident and had some subsequent back problems. While I was on the phone with her I received a beep from my call-waiting. Every time I see "Unknown ID" on my caller ID, I always think of Nathan. I don't ever expect it to be him, and generally it is a telemarketer. As the phone beeped again, I asked my mom to hold for a moment.

"Hello?"
"Hi.
pause
Brittany, it's Nathan."

Usually hearing his voice sends my heart into a twitterpated frenzy. In moments, I find hope where a starving man couldn't find a crumb. I can't imagine what it would be like to be stranded on an overgrown island with oceans, land between you and everything you ever cared about or ever could. This time, all I heard was the voice of a weak man searching for a connection.

The conversation that followed was surreal. He called to check in on Richie's health and apologize for his part in the negativity we created. I avoided saying "it's ok". I don't want to assume anything about Nathan. I know by tomorrow (when he said he would call again) everything he said today could be completely changed. I believe everything he said was true, but that is my own downfall.

Three Minutes Later

I have a new theory on reincarnation. By "new", I mean new-to-no-one-else-but-me. I present a brief, and ambiguously misdirecting, introduction to my idea on life after life.

Birth.
Death.
Life.

I know I was alive before I became who I am now. I am detached from those memories though. The best way I know to describe the feelings I have about my life, before my son was born, is to say that it's like hearing so many stories about who I was that I feel familiar with that person, but so completely detached that it may as well have been someone else. I felt the same way about the first eighteen years of my life, during my pregnancy. After my son was delivered at the hospital, even those significant eight months faded away. I was the first in a series of myself and my childhood friends to have a baby (only because my son was born prematurely and a mere few weeks prior to Jennie's little girl). Due, partially, to the fact that my friends and I were all having babies within less than a year, I recounted my pregnancy, labor and delivery countless times. I feel a connection to that period in my life, but less vividly than even the day after my son was born.

The day my son was born I lost all selfishness. With that burden lifted from my soul, I became the person I am today. My thoughts and concerns centralize themselves strictly around Richie. Every part of my life is devoted to him. As, I feel, it should be. In no obligatory way, I feel blessed and very honored to be a mother. The one trait I have acquired, which may not be so desirable as the others, can only be described as judgemental. At least, I feel that I am judging those that do not necessarily give wee ones proper care. When I examine the animosity I feel towards neglectful care-withhold-ers, it comes down to a protectiveness over all innocence. I have always been maternal and nurturing, by nature. I might be making excuses for behavior I don't care to admit I indulge in. Either way, I find it despicable when those who should be protecting their young, do not. Since I have become a mother my standards for myself, as well as anyone with children, are progressively strict. She said I would one day, and I now understand what my mother meant when said she loved me too much.