Saturday, February 12, 2011

My Secrets

Sometimes I think that if people were to see the real me, they may not like what they see. Sometimes I feel that even God doesn't like the real me: the person that keeps things hidden so far down, that no one, not even my close ones, know or want to know what is going on.

I am a woman, trying my best to figure out God's will for my life. I could have gone to Grad School, then on to get my Doctorate, but instead, I am a mother and a wife. In that order. I never meant it to be in that order, it just happened. Circumstances prevent me from putting my marriage first. That being said, sometimes I feel like even Patrick is at one end of a long, dark tunnel, and I am at the other. We only see shadows of each other.

Furthermore, I'm not even sure I am following God's will for my life. I am just floating along. We didn't plan Evie...We didn't pray about having her. I didn't pray to see if I should quit working. I didn't pray to start selling 31. These things just Happened...So how do I know I am following God's plan? I always thought I would be singing somewhere, or teaching music, or directing a choir, performing in some capacity, doing something along those lines. Instead, I sing at church and teach preschool 1 day a week for 30 min at a time. How do I know that is what God wants me to be doing???


I have heard a lot of compliments lately about how brave I am, about how strong a woman I am for dealing with a special needs baby, but the truth is, that I didn't ask to be that way. I don't try to be strong. I just do what I have to do. Any mother in my shoes would do the same thing. I don't pretend to know everything about my baby. I research and search for answers when I need to. I have given up my career for her. But honestly, any mother would do that, if they had to. And most do, in some way or another. I am not special. I was not given Evie for any specific reason, but she was a gift. I will never take Health for granted, and I have learned a few lessons over the past year, but it doesn't make me any more of a mother, than anyone else.

As a matter of fact, I feel like a terrible mom sometimes. I have help taking care of her, when there are many kids out there with MUCH worse conditions, that only have their moms. I frequently take time outs, where I will leave her with someone else so that I can have some "me" time, where as other moms are incapable of doing such. I often take naps when she is napping. I am incapable of keeping a clean house and hot, healthy meals on the table every night. Laundry is frequently piled up. Sometimes I wish I could be teaching music, my passion, and instilling that in someone else.

Evie deserves a Mom who can do all of these things, and instead she is stuck with me, for better or worse. As is Patrick.

I struggle with the "should-do's/ should-be's". We don't have a big fancy house on Ellerbe. We, as a matter of fact, have a lower-income Middle class home, that is mostly filled with love and second hand furniture. We have clutter, that I am embarrassed about. My husband is a procrastinator and a pack rat. And I let him be.

We went to Atlanta this past week, and there I met so many wonderful people who have much worse problems than we do. They are saints. Me? I'm just a struggling Christian, who has much room for growth.

Our care plan for Evie is pretty much the same since ATL. We are going to try her on a different med, and if that doesn't work, we will do another med, that isn't FDA approved, and THEN, if that doesn't work, we will have to resort to the GJ Tube. However, I am much more comfortable with this having seen the new GI. His plan is one that is much more feasible than our last GI, who claimed that we would have to feed her almost 24-7. His plan is to do 12 hr feeds at night, and then 3 off, 3 on, 3 off, 3 on and so on, to where we would still take her to therapy, still let her eat by mouth, and most importantly, if we didn't like it, how it was working, we could take it out, no problem. No questions asked. He spent 45 min in the room with us, talking about our options, and the procedure (Upper GI) we were going to have done, which I LOVED. After returning, he spent an additional 45 minutes explaining the results and the meds we were gonna try. I feel much more comfortable with him, than the GI from NOLA. I hope I made the right choice.

Most days, I love my life. I love being a Mommy and a wife. I love selling 31, and I love my 30 min a week teaching. But some days, I feel like its not enough. I am not fulfilling my life long dream of performing/singing/songwriting/conducting/teaching. It feels like I am just floating right now. I am hoping God will reveal his plan for me and I am hoping that it has something to do with music. But most days, I am not so sure. Its probably a huge lack of faith on my part. But I am going to figure it out one day.

For now, I will continue to do the best job I can with Evie, and try not to sink into depression. I will be a wife and mother, in that order, some day, if not today.
I will have that house on Ellerbe. I will keep the laundry folded and put away. I will have brand new furniture that fits my style, and a clutter free front room. I will have hot, healthy meals on the table at supper. And hopefully, I will be, as Brother Mark used to say, the best Christian that Evie knows.

Friday, February 4, 2011

Atlanta

I will catch everyone up on whats been going on the past year:

Evangeline has a rare metabolic disorder known as LCHAD. She cannot process long chain fatty acids. In short, she eats a very low fat diet and must eat every 3 hrs so that her blood sugar does not drop. The reason she must maintain a strict diet, is that #1, if she does eat the wrong kinds of fats, it will cause her to become really sick to her stomach, and the fat could eventually build up around her heart/eyes, since it has no where else to go(she can't process it to use as energy, like most of us.) #2 since she can't use her fat stores as energy, she eats every 3 hrs and uses the sugar from those feeds as energy.

Evangeline has been vomiting lately. So much so, that she lost 8 ounces this past week. When an LCHAD baby vomits, there is a tendency for the blood sugar to drop. If it drops, she can become hypoglycemic: lose muscle tone,lose alertness and, among many other symptoms, it can eventually lead to loss of brain cells.

Currently, we feed her every 3 hrs during the day, and have her on a continuous slow drip of formula via G-tube at night. Our fear, is that she will vomit during the night and inhale her own vomit(this is known as aspiration). So, a few weeks ago, when she began vomiting again, we placed a call to her current GI, and his recommendation was to place a GJ-Tube, where she would get continuous feeds throughout the day. 24 hrs a day, Evie would be hooked up to feeding pump. This would stop the vomiting, because her tube would not only be moved from her stomach to the lower intestines, but she would get a very slow drip all day. This would also keep her blood sugar high, as she would be "eating" constantly.

HOWEVER, while these things are good, there are some definite complications to this procedure: She would eat nothing by mouth, it would impede her mobility, and it would hinder us from being able to take her out, anywhere.

In short, I am not ready to make this big of a decision.

So, after I learned what her GI wanted to do, we decided to make some calls to hospitals, clinics, etc. to find the best solution for her. We called Children's Houston, Children's Little Rock, Baylor, and finally, Children's Center for Digestive Health Care located in Atlanta, GA. Of all these places, only the CCDH would answer our questions.

Before making those phone calls, I asked God to show me a clear path. Not having any of my questions answered by the others, CCDH was the clear choice. One that God had chosen for us.

We are very blessed to have been able to find, through a good friend, that there are 2 Ronald McDonald houses in Atlanta. Praise God that they have the space for us, at the one closest to the CCDH. WE are also very blessed to have found out about Angel Flights and Pilots for Patients. They, if weather permits, are flying us to Atlanta, at no charge to us. I am so very thankful to the men and women who run these organizations. Without them, we would be stuck driving a very long drive, with a 1 year old who has special needs. This has all be orchestrated by God,and I want to give him all the glory! Everything seemed to fall into place.

I hope that we get the answers here that we need. Patrick and I have been fighting for Evie for a very long time, and are ready to see a Dr is willing to do the same.IF we don't find them here, I have full confidence that God will guide our steps in the right direction.

Thank you all for reading. I hope to update again tomorrow, in celebration of making it ONE WHOLE YEAR!!