The Truth

I have contemplated for a couple of days whether or not I dare tell the real truth of "how I am". I know, I know all of my posts are brutally honest, but as of late they just consist of updates on Payson's health and the other kids. So, after several people have asked me, "how are you really doing" I figured maybe I should do a post exposing me emotionally naked. The only problem with this is that it is a harsh negative reality I don't usually have time to think about and if I do think about it I go to a place that emotionally robs me of my coping skills. So, after a few days of thinking about what I should write/tell I figured I would just put it down. If people care enough to ask I should at least be honest to tell them the truth. So here it goes:

Most of the time when people ask me, "how are you?", I smile and say, "I am tired, but isn't everyone". Which is completely true on both accounts, but little do they know I feel as if I am hanging from a 50 story building being held by a fringe of string. Most days there isn't any time to sit and think about where I am at emotionally. Who am I kidding everyday I don't have time to think about it, but I do find myself some time during the chaos of the day where my mind is able to wander and go there. Aside from extreme tiredness, depleted emotions and mind numbing worry there is a family I have to keep together, a house that still needs attention and a business that has endured time suffering which all puts a huge weight on these small shoulders of mine.

Todd and I are coping and doing the best we can, but feel we are losing touch with one another. We love each other and will fight for our marriage! Yet, right now that marriage has had to just tread water b/c we are unable to invest time or ourselves into it. Occasionally, we find the time to be together, but it never feels like it is quality time spent. It is always piece mealed together. From my previous post you can imagine our intimate life is wilting away under the pressure of prying ears. Our conversations are usually reports on Payson, the day, the kids, what the doctors said or what our plans are. We can't even make a definitive plan for a vacation b/c we are easily distracted, one of the kids is calling or one of us is asleep. I feel so disconnected and lonely from him that my heart aches, but my body just can't "care". (Boy that sounds horrible). With that I mean that by the end of the day the last thing either one of us wants to do is chat about things, give physically to each other or even look at each other. The only thing we really want to do at the end of the day is be entertained mindlessly or just sit staring at the walls. Now don't get me wrong it isn't that we don't (I am putting we as if Todd and I have discussed that we are the same page...No, I can't say we have discussed this) care and are beyond help/hope. We certainly can get back there, but right now we having to let our marriage be on auto pilot. As this medical nightmare comes to a close I know we will be back to our feisty selves and closer then ever. Yet, right now it makes this road a pretty long, lonely one!

Our (Todd's) business, well like our marriage is on auto pilot. Todd's generous and loving heart deserves to make him a millionaire, but our business just can't write those kind of checks (yet). We are very blessed to have a business that has sustained fairly well during this economic downfall, but as everyone has we have certainly felt the crunch. Unfortunately, for us to make more money we (both of us) have to invest more time into it. It is virtually impossible for us to cut costs b/c we have made promises to our clients. Yes, we can do this or that to cut costs but to do that we have to put more time into our business and that is the one thing we are short on. The business has some debt that has helped us stay a float during the dry seasons, but the repayment of that debt and saving for rainy day fund (this goes for personal too) haunts me often. I also fear that because Contrast isn't incorporated that we aren't protected from creditors and sue happy people, (which we aren't in a suing kind of business, but you never know). I am afraid one day the company will not be able to sustain this family of six and these two people who don't have many other skills will be out of luck.

Me...I don't even know how to answer how I am doing. There are days I just go with life and not think about what we are having to endure as a family. There are moments of times I have to think about life. Half of those moments I find myself content, peaceful and extremely blessed. Then there is the other half I find myself angry, frustrated, sad and ready to crawl in a hole. Talk about volcano...Iceland's got nothing on this hot mess of emotions inside of me! I do spend times during the day thinking, "this time last year" especially as we get closer to the anniversary of my thyroidectomy and fetal MRI. Sometimes I even go to "what if they had identified the complications" and wondered what they saw that made them think our little boy was connected. While my mom was here on Sunday, I even told her I remembered calling her after the MRI to tell her everything was just fine and hearing her praise Jesus with a huge sound of relief in her voice. Tears well up when I think about that day; the nervousness and worry then the relief we felt when the doctor said everything was connected. If only I could go back in time...but what good would that do, right?

As I ponder the past hellish year and the what if's anger arises in me. I am partially angry at God for not fixing him in utero, not making this an easy fix, not providing a miracle that He can't denied and allowing my heart to endure another heart breaking trial. Of course, I am mostly angry at myself for not listening to my doctors, making the choices I did concerning my illness and not researching more about the medical issues that my son has. There is anger for my kids having to suffer, I mean all of them. Payson has suffered physically and emotionally, but so have my other kids. There have been times that I wasn't here to give them that hug or have been absent minded to be able to handle their needs/emotions. Of course there is a nice cup of guilt mixed in with that anger recipe. I am sad because we are having to endure this. I am sad that Payson's body is riddled with scars, his ears are small/deformed and he will have medical complications for the rest of his life. I am sad that my last opportunity to have a baby ended on this note. I have had four children, only one labor/delivery/homecoming was a rejoiced one the rest were not. I loved my birth experience with Margaret Ruth because it was a celebration and had so hoped to have another one just like it, but I was robbed of that chance. I was robbed of the chance to have friends and family stop by with flowers and excitement beaming from their eyes. I was robbed of the chance to properly heal and bond with my newborn. I was robbed of every pleasant ideal that I should have had when I gave birth to Payson. Why couldn't I have two out of two. I know, I know I should be grateful for the one, but this is called the truth post not the flowers and pedals post.

On top of all that you have to add that nice ingredient of frustration to the mix. I am frustrated we are here and not better. We thought it was over in a short amount of time, not years! We thought after the first surgery we were smooth sailing, so as one can imagine frustration is a justified emotion. You know what frustrates me the most these days: feeding Payson. I try and try. I bend over backwards, make him pureed foods, buy him whatever tools they recommend just to help eat. Just this past weekend he took three bites in one hour...ONE HOUR of sitting on the floor trying to stimulate his mouth to swallow his damn food! One freaking hour and then he'd smile and it would all come out. He never got an ounce of it. He has continued to do this performance everyday since. I went so far as to tell his speech therapist that I am the wrong person to feed him, that maybe I should just have his nurses do it. She strongly discouraged me from doing that knowing from personal and professional experience that it would prevent bonding between us. In my mind if I am frustrated and he knows it he'll feel that as negative and associate that with eating and I don't want that, but she assured me that if I got frustrated it was okay to stop. Does this mean I can stop at putting the bib on?! I feel so guilty for getting frustrated with him eating because I know he is trying his best. I mean what isn't to love when you put a spoon full of carrots in your babies mouth, he has no idea it is there then smiles at you allowing you to see his orange stained gums and have it all spill out. I just want it to be easy...he has endured enough already, can't this one thing be easy? Time is of the essence with eating. If by one year if they aren't eating a measurable amount consistently then the length of time they are tube fed is ten times as long. This cheerleader is almost out of steam so could he please get this one thing?

Don't even get me started on his development. Again he tries his hardest! When he knows he did something right he will get so excited for himself and throw himself back. It makes my heart happy to see him so excited. Yet, there is that wonderful voice in the back of my mind saying, "are we in the normal range developmentally?" The answer is no! Here we are almost eight months old and Payson can barely sit up on his own, can roll over to his back, but not to his stomach, isn't even attempting to crawl and is plain just behind on his development. When he tries to sit up his head and tubes constantly throw him off balance. Until his core muscles are strong enough to support the extra weight and tubes he is having to learn to balance himself creatively. Even though I roll my eyes when they say he was premature it is a fact that he was 5 weeks early and should get some developmental delay credit for this. Don't forget the fact that he was hospitalized for 151 days, but in my deepest desires of my heart (most any mother's heart) you just want your child to be normal. You want them to be normal and if they are going to be different you want them way ahead, not behind. He has endured so much, I just don't want another thing people will stare at him for. Even though all my therapist tell me that it usually takes to the age of 2 for pre-mature/hospitalized babies to catch up to their counterparts it still is another "not normal" thing about him. My heart just aches for him! If his development was based on his will he'd knock them all out of the park. Unfortunately, his will needs to talk to his coordination!

Now that I have said staring let me get into that...I was one of those who would stare and not ask question of someone who was different. I was one of those who would stare until they looked at me then I would look away. I was one of those who complained about how many handicapped spaces stores provided. I was one of those people until we became on of them! The other night we were in a restraurant and our waitress said, "can I ask what happened to your son?" I looked at her with tears in my eyes and said, "thank you. Thank you for asking and not just staring." With that I told her his medical issues. Then a night last week we were in a restaurant and as we were leaving there was a teenage girl and her mother just staring at Payson and his vent. It was a pitiful shameful stare that angered me. So, I asked them if they would like a closer look or better yet if they'd like a picture so they could stare longer. The mother's mouth dropped and I told her it is nicer to ask then to stare. Then there is the favorite handicapped parking spaces! Do you realize for this mother who is carrying so much crap while the nurse carries 4 large bags and sometimes holds Margaret Ruth's hand how much of a blessing those spots are. I have even become aware if they are not designed properly. Case in point, when we go to therapy there is one spot that is up against a concrete wall, so you can't open your doors or maneuver around your car then there is a huge step. How is anyone in a wheelchair much less me able to work with that spot? There have been times someone without a handicap plate or sticker is parked in a spot leaving no other spots for me. When I catch the person who is walking just fine to the car with no handicap sticker I boldly stop them and say do you realize that I have had to carry this baby and vent a lot further b/c you were selfish and wanted a good spot. They just stare at me and don't say a word. Sometimes I feel like a woman with a mission to wake up the normal people to the handicapped world and sometimes I feel as if I am bitching into deaf ears. Needless to say both the stares and the spots can leave me slightly angry.

At the end of the day one would hope we would have a warm, inviting bedroom to retreat too. Well, we don't! We have white walls, a worn out comforter and mixed matched stuff with a metal desk in the middle of it all. For years I have wanted to make over our bedroom, but other projects take the priority, but now I have realized I need my bedroom to be a sanctuary more than ever. We just need a special place that is ours that invites relaxation and is warm. When I go to bed at night I just want to say, Ahhhhh, I am home! My mom is the master at making her bedrooms absolutely gorgeous and inviting! I wished I had the same talent she is in decorating. Maybe this summer I can work on that, anyone know any great seamstresses?

In the end the whole situation makes me sad, hurts my heart and even though I try words don't do justice the hurt, anger, frustration and sadness that dwells within my soul.