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Wednesday, February 23, 2011

02-23-11 / Not really sure what I'm becoming.....


What my life has become was explained to me by one of our sweet school counselors Monday and it made perfect sense. When people say, “my plate is full”, that is one thing, but when your plate is so full it begins to overflow, that’s another thing entirely. My plate is beyond full and every single time I try to pick up the pieces that have fallen off, I place them on top of other things that are piled entirely too high, causing all of it to fall off the plate yet again. The daily chores are becoming too much for me. The things I merely complained about prior to all of this, are becoming impossible to attend to. Laundry, dishes, packing lunches, packing Aaden’s backpack, bathing him (which Aaron has been having to do every single night), clipping his nails, brushing his teeth, brushing my teeth, picking the house up, you can forget about cleaning the toilet, making sure there’s gas in the car, getting Kamryn picked up and dropped back off every other weekend, getting the bills paid on time, trying to pretend I’m happy when I’m not; this list goes on and on and on. These are everyday things, things I used to be able to do without thinking about them and now I can’t seem to get my act together enough to accomplish anything. Some days, the simple fact that there are dirty dishes makes me break down and cry. I have forgotten to send Aaden a lunch, I guess I should be happy I’ve only done this once and be thankful that my dad noticed it before sending him to school with nothing to eat. One morning I forgot to send him a shirt, considering I bring him to my parents in his pj’s and they dress him and get him to school, this is a problem. I can’t tell you how many times I’ve had to send dirty jeans for him to wear because I have simply forgotten to do the laundry. I am becoming a walking nightmare; I’ve never felt so out of control in my entire life. Just when I thought things were getting better, bam, reality check.

I think my problem is that I compartmentalize things. I store painful things in the “painful things room” of my brain and lock them away. This isn’t a healthy way to respond during the actual time of ongoing trauma, I’m simply unable to face and deal with everything, so I tend to pretend it’s not there. The build up is more than I can handle on my own. I have tried to be strong and people keep saying that I’m strong but I have completely lost it, I don’t have control of any aspect of my life anymore and that makes me so angry. Aaron is working nonstop, literally; this isn’t something he’s choosing, nor is it something he can change. He is gone every single day for a minimum of 13 hours each day, counting travel time, when he gets home he’s exhausted; the parental and home life duties are mine all weekend long so weekends aren’t even remotely restful. I know he wants to be home to help me but he can’t, I know he would do anything to change things at work, but he cant, I know the fact that I’m at the end of my rope and he can’t be there to fix it is killing him; he does what he can while he’s home, but the truth is, he’s just rarely home.

Sunday was a day I would love to forget, I had a total meltdown, Aaron called Lanie, our nurse, and my mom; next thing I know, Aaron’s headed home from work and mom’s flying in from Orange. I’m a good mom, but I feel like the worst mom on the planet. I can’t even take care of my own kid at this point. I can’t tell you the last time he was in my possession for a solid week without having to stay with my parents. Mom took the kids to lunch and helped us out a ton by taking Kamryn back to her mother, when she got back to the house she said she would take Aaden home with her for the night. Here we go again, another night that I can’t be the mom I’m supposed to be. I didn’t want to send him, but that was selfish, I was in no condition to keep him home, I just wanted him there to snuggle with me and make me feel better; it was clearly better for him to go with her. After all of this took place on Sunday, I got a text from Lanie Monday morning asking how I was doing and stating that Dr. Sherman would like to see me. She got me in for Monday afternoon so I wouldn’t have to miss any work and I had mixed emotions about the visit. Aaron would be at work, so mom offered to go with me; just wasn’t sure how all of this would go. I’ve never walked into a doctor’s office with the intent to share how nuts I had become. I just wanted to walk in and scream at the top of my lungs, “I’m crazy lady, fix me!!!” When we got there I text Lanie and she got us right in, then she came in the room to hug me and tell me that she loves me; where else can you find medical care like that? What would I do without these people? Dr. Sherman came in and I felt like I was in a hot seat, literally. It was time to admit that I couldn’t do it, it was time to face up to the fact that I’m a weak person and I’m losing my mind over all of this; she apparently didn’t see it that way. I told her that I’m not doing well, I told her that I don’t sit around thinking sad thoughts all the time but I somehow have managed to slip into this depressed state, I begged her to somehow fix this and make it all go away. She started out by saying that I am doing quite well and better than most would at this point, you might think these were words of encouragement but I felt a sudden urge to smack her. Who would look at me and say I’m doing well??? I didn’t want to hear that. I’m not doing well, I’m typically the glue in our family, I’m the hard headed, strong willed, mean one; I’m the one that keeps a level head when things are bad and I’m no longer that person. It was plain to me that I was not handling this well and this lady is sitting here telling me I’m handling it better than most. I would certainly hate to see how “most” would handle it if this is a picture of handling it well. All of this having been said, once I shared the events of my Sunday, she gave me a few options on how to handle things, see a counselor, begin working out regularly or medication; I politely chose medication! I just want to survive this ordeal, I just want to get through it in one piece and that’s not happening at this point, let’s all hope the medicine does the trick.

Leading up to all of this, we had been forced to face some realities that are laid before us. I went to see Dr. Sherman at the beginning of the month, a visit that was a disaster in and of itself. It was my first visit without Aaron with me and it was at 3:45, which gave me all day to mill over it. I hadn’t been back in that office without him and the last few times I’ve been they haven’t been happy visits, needless to say I was a mess all day long. I cried off and on all day, I had severe anxiety about this visit. My mom was in Virginia because her uncle had died and dad offered to go with me, but I really needed him to keep Aaden. I would have said to just bring him, but I was worried I would get more bad news and I didn’t want him there to see me fall apart. So, I walked in by myself to a room full of pregnant women. Oh the joys of sitting among a bunch of pregnant women hearing them complain about those stupid little things that pregnant women complain about. At one point a new mom, her son was 2 weeks old, was chatting with a girl that was due any day and literally said, “this is my first and last child, sometimes I thank God for him and sometimes I just look at him and cry”. It took all that was within me not to stand up and scream at the top of my lungs. Was she serious?! Did I really just hear her say that? At times I want to walk up to these women and say, “my baby is going to die, now don’t you feel stupid for the things you have said”; what good would that do though? I finally text Lanie to let her know I was there and the waiting room was so packed that there wasn’t a place to sit; she immediately called me back. I guess if there’s a perk to going through something like this, they’ll give you royal treatment while you’re at the doctor’s office. I’d rather sit and wait for hours to see the doctor and get a healthy baby in the end than to be the one they bring back immediately upon my arrival to help me avoid further torture.

I already explained why this visit was so stressful but I didn’t mention that we were getting blood work back too. She had tested my Homocysteine levels and also did a diabetes screen, not the gestational diabetes, just regular old crappy diabetes. A week after this visit I took the one hour gestational diabetes screen, which I failed and then had to take the 3 hour test, which I passed; those tests will make you suicidal for sure! She also tested Aaron to see if he had the same genetic defect that I had, Methylenetetrahydrofolate Reductase, more easily remembered as MTHFR. I couldn’t help but be negative and to think the worst of all of it, nothing else had been positive about this pregnancy; why would this be any different? Well, I did get some good news and some news that made me very uneasy. My Homocysteine levels were low, which meant I wasn’t susceptible to blood clots and I also wasn’t diabetic; not sure if I was more happy about not having blood clots and a higher risk of future heart disease or the fact that I could go home and eat all the sugar and carbs I wanted, either way, this was good news. The bad news came when she talked about Aaron, he also has MTHFR. Without becoming increasingly confusing, there are two types, A1298C and C677T, I have a double copy of the C, one on each chromosome, and Aaron has a single copy of the A. This was my disheartening news. I was really hoping Aaron didn’t have the mutation too because I would then feel ok about having another baby, given this news, that all changes. Dr. Sherman is very honest with me and I completely appreciate that. I know she gets sick of me walking in there with my typed list of questions, but this is all so foreign to me and I’m trying to educate myself. She quickly let me know that she couldn’t give me any advice on whether or not we should try for another baby, after all, we have Aaden and he is perfectly normal and extremely smart; who knows what might happen next time? The best thing she said to me about that is that Aaron and I are in a bad place, we are closed minded and unable to see beyond the trauma that we are currently in the midst of; she asked that we get through this first and allow ourselves to heal before we start really considering our options. She also asked me two questions: Do I want to give birth to another baby or do we just want another baby in the house? She said if we can answer the last question, then adoption might be a good thing for us to look into. We simply don’t know what to do at this point, but that’s not for us to deal with now, we will cross that bridge later.

The last couple of weeks have been full of the far too familiar up and down motion of the trauma roller coaster. I haven’t written because I think I’m just going through the motions and sitting to write makes me stare my situation square in the face. One blessing has come from the last couple of weeks; I hesitate to refer to her as a blessing and you will see why. I was contacted via Facebook on February 10th concerning and woman that just found out that she was carrying a baby with the same thing Thomas has. My heart immediately sank but at the same time I had my doubts that it was the same thing. Many people hear the words “birth defect” and “brain” mentioned in the same sentence and assume it’s the same disorder. I was truly hoping it wasn’t as severe as what Thomas has and this poor mother would get to see her baby grow up. I got this person’s name from this mutual friend and decided to reach out to her. After all, if anyone knows where she’s at, it’s me! If I had someone walking in my shoes when I first found out, I would have wanted her to reach out to me, not contacting her was never an option. I emailed her immediately to share a piece of my story with her, I also shared the link to my blog with her so that she might find some type of peace and comfort in knowing that what she’s feeling is “normal” and most importantly, she’s not alone. I wasn’t expecting her to email me back since I remember those first few days being so hard on me that I didn’t respond to anything, emails, phone calls and rarely responded to text messages. She did respond and a wonderful friendship has blossomed. I can’t explain how my heart bleeds for her, I just know the pain I felt during that time and still feel and I just wouldn’t wish that on anyone. Through corresponding with her, I discovered that her sweet baby doesn’t have Anencephaly, but she has something called Holoprosencephaly. Both are horrific in nature and not something any parent wants to hear about their baby. They have some things in common and some things are very different, all in all, the end result is the same. We are from the same hometown but never knew each other. We kept saying we needed to meet up for lunch or something and we finally named the date, we would meet up Saturday for lunch at McCalisters. She text me early that morning and I remember thinking when I saw her name, “she’s going to cancel”; she did. Again, I remember that all too well, she had had a wonderful day the day before and woke up Saturday to another day of nightmares. Long story short, her sweet sisters (who I love to pieces too) threatened her into coming to Beaumont to see them. They went to lunch and then the 4 of us met up at Marble Slab, the cure all for a bad day. I had never met any of them but we were like 4 best friends that have known each other our entire lives. I have never felt so close to a perfect stranger, we share a bond that most people cannot relate to. Now you see why I hesitate to refer to her as a blessing, she is losing her baby too and that devastates me. I think most people think I’m helping her through this, since I’m already 7 weeks into the nightmare, that I can offer her some type of comfort but the truth is, having someone to share this with is more help to me than she’ll ever know. Aaron is a supportive and loving husband and he does all he can to help me through this pregnancy, but having someone that completely knows how I feel, being the one physically carrying out the pregnancy, is quite comforting. Baby Thomas and Baby Faith will be the best of friends in heaven, two spoiled rotten babies rocking their days away with their grandparents.

As I’ve been feeling very sorry for myself the last couple of weeks I’ve had to take a few steps back. In the beginning I was bitter that I had to be the pregnant one here, that I had to carry this with me 24/7. Then I had moments of clarity and realized that I’m the lucky one that gets to spend every single moment with my sweet baby while he’s here, nobody else gets that. Now I’m back to being bitter that I’m the pregnant one, this stupid cycle is truly never ending. I’ve had a really tough time seeing the silver lining in anything lately; I just think everything is bad. I get angry with Aaron because he gets a break, he gets to walk away from me and go to work, I’m stuck with the constant reminder of what is happening slowly but surely. I know he thinks about this constantly but there’s something about being forced into the constant physical reminder that makes me feel so trapped. I feel like a prisoner to my own body and sometimes I just want to run away and leave my body behind. Well, my sweet Assistant Principal pulled me in her office to give me a sweet and direct reminder. She lost her baby girl to cancer a few years ago, I call her a baby girl but she was a beautiful young girl that was just beginning her little life; her name is Victoria. She shared some intimate thoughts with me about losing Victoria and the things they went through together. All of her words boiled down to the fact that I am Thomas’s mommy, I am his source of life and it is my job to be his rock and his protector. One thing she said to me was, “Don’t give up on your baby. Until he takes his last breath and leaves this earth, don’t give up on him.” I hadn’t said the words, “I give up”, but she clearly had picked up on the fact that if I hadn’t given up, it was in the near future. I’m at the point that I just want the constant roller coaster to stop, I just want to take a break, I want to step off for a minute to remember what life was like prior to it being completely turned upside down; ultimately, I just want ME back. I guess these thoughts are normal, I feel guilty for thinking such selfish thoughts, but there’s only so much a girl can take. I cannot imagine what my sweet friend, JoEllen went through watching her little girl fight to survive. I don’t think I’m strong enough to do that with such grace. When I start feeling sorry for myself for having to deal with the daunting task of watching my son fight to survive for 16 weeks, I have to remind myself that there are parents out there that watch their children fight for years; it makes this struggle seem far less tragic.


  1. Holly,
    I'm so glad that you connected with someone via Facebook who's going through this same thing. When I first saw that you'd heard of 'someone' I wondered if it was my friend, but her baby has acrania, so I guess it's not. I'm still praying for you!

  2. I love you and I’m praying for you.

  3. Holly,

    I stumbled across your blog by way of a friend who stumbled across your blog. :) On a very minor scale (in comparison) I can relate to how you feel. I've re-written this comment several times because I do not want to sound callous or triumphant in the face of your obstacles. I'll explain...

    After 2 years of unexplained infertility, a few doses of Clomid and IUI, I discovered that my dream of being a mother was coming to past. My 37w1d journey was nothing short of difficult. From the very first visit (empty yolk sack and 10 days off in measurement) until the day Blaire was born at 3 lbs 13.8 oz and 15 1/4 inches long, I prayed. I learned to talk to God in a way I never knew I could. I also learned that He answers in ways I didn't expect.

    At 8w3d I tested positive for antibodies. Similar to Rh factor but not treatable. My doctor told me that one of three things could occur. Fluid on the brain, fluid around the heart, or intra uterine anemia. All could lead to fetal demise. I was in complete shock. She said further testing was required. Thankfully all that turned out ok. NO worries about antibodies. I dared to breathe a sigh of relief. ha!

    At 16w5d it was discovered that my daughter had fluid on her brain. Completely unrelated to the antibody issue. The perinatologist informed us that our daughter had Down's Syndrome "or worse" and would not be a viable child. Termination and an amnio was recommended. We adamantly declined both.

    At 18w5d Blaire's frontal lobe and midline was not there. We were devastated. The peri listed no less than 20 things it might be. Again termination was recommended. Again we said no. Instead we decided to do an MRI. The peri called less than 30 minutes after it was over and said he could hardly believe it but our daughter's brain was perfectly fine. However she did have aqueductal stenosis and would require brain surgery at birth. Excited but then not so much. Yay for no detectable anomalies but boo for surgery.

    22w2d. IUGR. Intra Uterine Growth Restriction. Poor umbilical blood flow. Any SECOND our daughter could die. MORE talk of termination. More talk of anomalies. Chromosomal abnormalities. SICK TO DEATH OF HEARING THOSE WORDS. SICK!!! The peri said we would not make it to term and that we needed to be prepared for a child with severe problems.

    I'll skip forward to 32w3d (just to save you from the touch and go, rinse and repeat of the weeks between). Hospitalized with pre-eclampsia. Blaire is falling MORE and MORE behind. Not a good combo. NO hope of going home until delivery.

    37w1d. FULL TERM. After 32 days in the hospital on strict bed rest, I delivered my sweet daughter. (This is where I was worried about how I would come across. Please do not take it as I'm being triumphant in your face or anything. I'm just sharing a story. Please!) She is perfect. God gave us a miracle. I don't know why. I feel chosen. I feel unworthy but grateful. I feel honored. She didn't need surgery. After multiple test the neurosurgeon decided that the fluid levels were not severe enough for surgery. We were so thankful!

    Blaire is 14 months old today. She's still small for her age. We are following the 3% growth trend. My doctor thinks I may have had MTHFR. I'm terrified of getting pregnant again...but want Blaire to have a sibling.

  4. ****Continued from above, because I didn't know when to stop. :)

    I don't have answers. I don't know why. I still sometimes wonder why I had to go through the pregnancy I went through. It was not pleasant. I would love to know what it's like to JUST BE PREGNANT. Just some morning sickness, being tired...that kind of stuff. I would have pretty much killed for that. Instead we had CONSTANT worry. Constant fear. The unknown loomed. We didn't know what the future held for our daughter. Would she have anomalies? Would she be 'viable?' Would she have Down's? Would she have some other chromosomal abnormality? Would she need brain surgery as a newborn? It was awful. That's why I initially said...on a SMALL scale I can relate to you. SMALL. Very SMALL.

    My heart bleeds for you. I'm aching for you. I wish I could hug you so tight! I had NO ONE. Not one single person who even had the slightest clue as to what I was dealing with. And again. I can't relate entirely. But I do know what it's like to live with constant fear and worry. I do know that the unknown is pretty much the devil. I have been told on multiple occasions that aborting my baby would be my best option.

    So I am going to pray for you. It's 3:39 in the morning. You haven't updated in a while, so I'm not sure where you are on this journey. But I'm going to pray NOW!

    Wishing you the best,