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Thursday, January 27, 2011

01-27-11 / Scariest Week Yet.....

01-27-11 / Scariest week yet…..

I have been waiting to sit and write for fear that the things I write might become twisted and tangled. I have spent most of this week in tears and scared to the point of childlike behavior. I haven’t been able to take care of myself, much less my son. After an amazing weekend filled with family, I was getting ready to start a load of laundry so Aaden and I could rise and shine Monday morning for work and school with clean clothes. Once I got him settled in with his cartoons I decided I should hit up the restroom before tackling the laundry. This is when my whirlwind of a new nightmare began, I noticed that I was bleeding; this might be too much information for some but my reality nonetheless. Experiencing something like this as a woman expecting a healthy baby is scary enough, when you’re expecting a baby burdened with something such as anencephaly it is beyond mortifying. Aaron was working and I was home with Aaden all by myself so I did what any 29-year-old scared girl would do, I called my mom. This was on a Sunday night, which just so happens to be one of my dad’s busier nights as a pastor, so Mom said she would get a message to Dad that she was heading to my house and she’d be here soon. I try to be a strong person, my mom says I’m not easy to help but I have to say I felt physical relief knowing she was coming. My mom can’t deliver babies, she can’t find the heart beat, she doesn’t have an ultrasound machine but there was comfort in knowing she was going to come sit with me and wait. Wait, wait, and wait. The story of our life!

As I was waiting to hear back from Mom, I sent a message out to our friends that I was supposed to meet for dinner; had to let them know that Aaden and I wouldn’t be making it. As I typed the text to them I began to really panic. What if this is it? What if he has passed away already and I am really in labor? What if we weren’t going to get the full 36 weeks with him? He doesn’t have a hat yet. He doesn’t have an outfit yet. He doesn’t even have a cemetery. Where will they take our baby once he’s born? I haven’t picked out his perfect resting place because I’ve been too selfish to just make myself do it. When I’m having a bad day I don’t feel up to it and when I’m having a good day I don’t want to ruin it by cemetery shopping. Will the nurses put one of those plain ugly newborn hats on him? I have looked at a million hats online and none of them seem right, since hats weren’t making any sense I hadn’t even entertained the thought of an outfit. Will the funeral home give me time to shop? I cannot bear the thought of burying my child in a stupid onesie; but will there be time to pick anything else out? I want my mom to make him a tiny quilt to be buried with but I haven’t found the “right time” to ask her to do it and now it might be too late. As all of these thoughts began haunting me I couldn’t help but cry. I try so hard not to cry in front of Aaden about all of this because it’s just so abstract that he simply doesn’t get it; I couldn’t resist this time and this time he noticed. He came up to me and said, “Why are you crying mommy? Are you scared?” I just smiled really big and said, “I’m crying because I love you so very much.” He literally laughed in my face and said, “Mommy, you’re so silly”, reason number 5 million that I love my boy. That was enough for him, he didn’t need to know exactly why I was crying; he just needed to know that I was ok. I started getting concerned messages from everyone that knew at that point and the tears would start back up; sometimes it’s simply overwhelming to realize how much our friends really love us. As I was corresponding with everyone I began sharing with Casey how scared I was and how I wasn’t ready for all of this. She is a photographer and quickly offered all of her tiny hats that she uses for newborn shoots, offered to find a cemetery and expressed that somehow our group of friends would get him the perfect outfit; there was a level of peace in that but I am his mommy, I feel I’ve let him down by not handling these things by now.

Mom finally got to the house and although I felt so much better, my mind just wouldn’t shut off. I don’t typically share what’s on my mind in person because I don’t like sobbing and more than likely once I start talking during these moments the sobbing is out of my hands. I think I just sat quietly, I don’t really remember. I do recall her saying that Mike and Sherry, they’re some of our adopted parents and consequently my kids adopted grandparents, were going to drive Dad to the house once church was out so he could be with us too. What wonderful people. This late at night and they’re packing up to drive Dad to Beaumont, not that it’s that far of a drive but I feel certain that isn’t how they planned to spend their Sunday night. These little acts of kindness mean the world to my family, I know many of you do not realize exactly how much it means; we thank you a million times over. They made it to Beaumont with Sonic in hand and we all enjoyed chatting while they ate, that alone helped turn my night around. Mom and Dad spent the night that night, I don’t think either of them changed out of their clothes just in case we had to fly to the hospital and they both slept on the couch; those are good parents.

The next morning, Monday, I got up right at 8:30 to call my nurse and newfound friend, Lanie, to fill her in on my night; of course she said to come on in. We made an appointment for 2:30 to see Dr. Sherman and we weren’t sure exactly how it would go. When we were first called back they told us to sit tight because they wanted to do an ultrasound, part of me was relieved to hear that we would get to see him and the other part of me started to feel anxious. I knew he was alive because he had been moving all morning but I was so afraid she might find something terribly wrong that would lead to an early delivery. Aaron and I started talking about what we would say if it was the same girl that had done our ultrasound on the 5th, the one that discovered his birth defect; we didn’t have the words quite worked out yet when we found that we had a different tech this time. In an attempt to make her a little bit more comfortable with us I practically shouted at her that he has anencephaly; sometimes I really wonder why I do the things I do. I just wanted her to know that we know that he is not a healthy baby; I was attempting to “break the ice” so we could hopefully have an open and somewhat friendly session with her. I think it worked, she thanked me for being so open about it and she shared that she has seen it several times in the past; see, my sudden outbursts aren’t always for nothing. She immediately found his heart and it was beating! That’s all I cared about for a split second but then I started questioning her; ultrasound techs do not like this by the way. I think their hands are somewhat tied on what they can and cannot say but there was one thing Aaron and I both noticed, his heart was beating, but it was beating very slowly. His rate is typically in the 140s and it was registering in the 70s, seeing this is a bad feeling for any parent. We quickly began to notice that it would speed up and slow down, it was ranging from the 70s to the 120s; any dummy would know that this is not a good thing. She felt comfortable enough telling us that her main concern was his irregular heart rate and I felt a small amount of peace that she only voiced one concern; although a major concern it was only one! We were placed in a room to wait for Dr. Sherman to come in and really discuss what was going on and hopefully answer some of the questions we had been wanting to ask her; while we were waiting, Lanie kept us company. We were able to talk with her about everything that was going on and gain some comfort from what she had to offer but as we were talking she was called away; in a situation like this, when your nurse is called away from your room all you can think is, “oh my, they’re all trying to come up with a way to tell us that our baby is almost gone”. Turns out, Dr. Sherman was suddenly very ill and her husband was coming to pick her up, we just had to return for our regular visit on Wednesday. Lanie gave us her cell phone number so we could call her anytime if something went wrong, I do love that girl. We left feeling pretty good about everything, even though his heart was beating irregularly, it was beating and he was moving and that’s all I cared about.

As the day progressed I started feeling a bit blah, I’m never sick so I was just writing it off to stress and lack of rest. Since Aaron had to go back to work, my parents took Aaden home with them so I could get some rest; they offered to stay another night but I honestly felt I would be just fine and this way they could sleep in their own bed instead of fully clothed on my couch. I was wrong again! Fever was setting in early in the evening and I was beginning to shake violently and could barely get up to use the restroom; I found the strength to get up around 1:00am for a potty break; I was bleeding again and it was far worse than before. I just sat and cried. All I kept thinking was that my baby is already doomed; I am going to lose my child; why can’t the remainder of my pregnancy just be uneventful and full of fun? Why do I have to worry about everything right now? Isn’t it unfair enough that our son will not survive on this earth that maybe we could be spared this additional stress? Again, I did what every grown woman does when she’s scared and alone, I called my parents. It was 1 in the morning so it took a few times to get them on the phone but I finally got through. Mom said she was back up rocking Aaden and hadn’t heard her phone ringing but she would get them all packed up and they’d head back to the house. I didn’t even have Tylenol in my house to take for my fever so my poor dad had to run into Walmart before they could leave for Beaumont. They finally arrived around 2:00, medicine in hand and a wide eyed child on the hip; bless his heart, he was ready for a day of activities after that little nap he got. First thing he said was that he wanted to lay with me so I turned my back to him, didn’t want to breathe in his face, and let him snuggle up to me and twirl my hair. I could literally feel his energy level rising, I knew we were in for a long night, he slept from about 8:00-2:00 and that’s all that kid needs. Dad gave me my medicine and they offered to put Cars on for him to watch so I could go lay in my bed and attempt to sleep. When Aaron got home around 5:30am he came in the room with Aaden, who was still awake, laid him next to me where he finally went back to sleep; that boy loves his mommy.

We woke up the next morning, I was feeling half dead so Aaron called Lanie for me to fill her in on the night before; she didn’t even make an appointment, she just said to get there as soon as possible. When you’re running high fever and haven’t had a shower, as soon as possible holds a totally different meaning. I managed to shower, without washing my hair, had no energy to put makeup on (anyone that knows me well can vouch for the fact that I don’t go many places without makeup and with dirty hair), and I proceeded to put clothes on that a blind person could tell didn’t match. This is the image you might find under “hot mess” in the dictionary. To top all of that off, Lanie asked that I wear a mask through the office to prevent blessing the other pregnant women with whatever plague I have encountered, which was later determined to be the flu. Let me say this, I do not like getting funny looks from people and walking in an office looking like that with tears streaming slowly down your cheeks and into your face mask will cause people to stare.

They placed us immediately in a room where the little heart beat girl comes in with her little heart beat machine to check for none other than the heart beat; which she could not find to save her life. Although I had already somewhat prepared myself for this due to the decrease in rate from our Monday visit companied with his lack of movement since Monday night, it still stung. I wanted to scream at her, “just go get Dr. Sherman, she’ll find it” but I refrained. She walked out and we were then informed that I needed to get dressed and head to ultrasound so they could attempt to find the heart beat, I put my non matching clothes on but I refused to bend down and put shoes back on so picture the previous hot mess, minus shoes walking back through the halls to the ultrasound room; not pretty. I slowly climbed up on the table somewhat holding my breath but it was almost immediate, there was his heart beat and it was stronger and faster than it was on Monday; I knew that girl just couldn’t find it! His rate was in the 150s and that made us feel so much better, not sure why he wasn’t moving but that was irrelevant because he was alive and I saw it with my own eyes. As we walked back to our room I began to wonder what those people in the waiting room must be thinking, I’m sure we’ve been discussed among spouses and I can only imagine the horrible things they’re thinking; not that I blame them, I would be the very same way. We were visibly unhappy and in pain, deep emotional pain; it was written all over our bodies, not just our faces, we looked completely beaten down.

Dr. Sherman finally came in and we were able to discuss everything with her. She went through some of the previous blood work I had done and explained that I do not metabolize folic acid the way I am supposed to. This means that for future pregnancies I will have to be on 4 times the normal dose of folic acid and if I understood her correctly, it’s a specific type of folic acid. This apparent mutation has a name that goes like this, methylenetetrahydrofolate, nice huh?! I have researched it and it blows my mind, I can’t seem to comprehend it all so I will just ask her about it again when we go back. I can tell you this; Aaden has never appeared to be more of a blessing than he does now. If my body does not metabolize folic acid and this is why Thomas will be born this way; Aaden is nothing short of a miracle. I did not take my prenatal vitamins with him the way I should have and the Good Lord knows I didn’t eat healthy but my boy is perfectly healthy and smarter than any other kid I know; he is our miracle. I guess by all medical standards Aaden should have been born with a neural tube defect of some sort but God chose to make him completely perfect, science can’t prove otherwise.

We also had the chance to speak with her concerning organ donation. We received bad news on that topic and I think we handled it better than we might have expected. I truly believe that seeing his heart rate so low and so irregular prepared me for them to say, his organs aren’t the quality required to sustain life in another baby; I was not expecting this whacky reasoning. Apparently in the state of Texas, these babies are not allowed to be organ donors due to the small amount of brain stem activity they are born with, sad but true. The law here seems to think that we would be “allowing” our child to die so that his organs could be redistributed. I don’t know if I should take offense to that or not but a small part of me does. If there were a small chance our son could survive and live a life full of quality, one where he enjoys the taste of food, takes in all the sounds around him, falls in love with certain colors for no reason other than he just loves them and like all other children touches everything within reach because he longs to know what it feels like; I would never consider “allowing him to die” and donating his organs. My son will never have that life and our state, which I love by the way, has decided to rob another child of the possibility of having such a life because of a dumb law. My interpretation of this is that the state of Texas feels we should insert a feeding tube and place our son on life support. My question for them is; until when? At what point have we not “allowed” our son to die so another can live? I don’t want my baby to die, but this outcome is what we have been handed; I would love nothing more than for another baby to live because of him. I think we feel a bit shortchanged to be honest.

When we first found out that Thomas had anencephaly I felt so angry that I was being forced to carry him for several more months knowing his fate. I was dreading each little part of it. After experiencing the week we have experienced I can say with full assurance that I am thankful for each day with him and I am not ready to let him go yet. I do not want this to end right now. Do I want the weight gain, nausea and occasional vomiting to end? Without a doubt! But I don’t want my time with my son to be over yet, I am most certainly not ready to say goodbye. I pray that God will grant us this small favor, I pray we get to have him until 36 weeks where he will be born alive and we can spend some time with him before he passes. I promise I will not take one bit of it for granted and to cherish each moment, I just don’t want it to end so soon.

My parents have been tending to Aaden since Monday, this can officially be recorded as my longest amount of time away from him and I am ready to have him back. We decided to pay him a visit and to check out some cemeteries closer to the Orange area, I don’t think either of us expected to find anything we liked but we feel obligated to see all of our options. Turns out, Dad found us the perfect cemetery! I know that sounds nuts but we knew instantly that it was where he was supposed to be. It is beautiful, everything is symmetrical and clean and the best part is that they have a baby land. He will be with other little babies under a beautiful statue of Jesus holding baby lambs; it’s amazingly perfect. I think my favorite part of today was watching Aaden climb up and down on the Jesus statue, we all know Jesus would have loved that so I tried not to stop him. At one point he climbed up there with his “instrument”, which is his harmonica, sat down right at the feet of the Jesus statue and started to play; it was sweet and hilarious all at the same time. I honestly felt we would stand and sob when we found where we would lay him, I didn’t. Aaron cried a bit but it wasn’t the way I pictured it; I think we both just found a little bit of peace there, it’s as close to perfect as I think we’re going to find. Nothing will ever be good enough for our little one but that place comes very close. I love it. Odd to say, but I love that cemetery; it will hold my son’s body forever and I will always love it. Today was the perfect ending to a perfectly crummy week.

Wednesday, January 26, 2011

01-22-11 / Picture Day.....

01-22-11 / Picture Day

After having a wonderful Thursday and Friday I was a little nervous about this day. My dear friend Brandy at Sneak a Peek Ultrasound has offered to allow us to see Thomas as often as we need or want and I was really feeling the need to see him; today was going to be that day. Aaron watches the previous ultrasound video at times and I still haven’t been able to do it, it just makes me sad; I was a little apprehensive about how this whole experience might turn out. If I can’t even watch the first video of him without crying; how in the world would I be able to make it through a live ultrasound without losing it? I contacted Brandy earlier this week asking if she might be able to squeeze me in and she had no problem at all coming in just for us today; she’s truly a kind and amazing woman! We want to include our family as much as possible with these little opportunities as this is their only time with him as well and having them there makes it so special for us. Before I go on about today’s events I would like to explain our ultrasound experiences leading up to this.

Brandy is another person that God strategically placed in my life, many many years ago. When I graduated from High School I made a swift exit from Jasper and headed off to college where I felt I was finally my own boss. I was no longer Brother David’s daughter, which isn’t a bad thing to be, but I was just me in a new place with perfect strangers; I could choose at that very moment exactly who I wanted to be to these new people in my life. I must admit I did not choose wisely, those that knew me then wouldn’t even recognize me now and I’m not referencing my outward appearance. I dove in head first, into all the things that were forbidden my entire life; after all, they were forbidden, they were excessively enticing. I was always that kid, wanting what I couldn’t have and not worrying much about the consequences if I chose to chase after it. I met Brandy while working at CafĂ© Del Rio in Lufkin, I will always be thankful for that meeting! She was like everyone’s little sister. She was so different from the rest of us, she was a sweet girl that had no business hanging out with our group; I think she got pure joy out of watching us make total fools of ourselves. I decided, on a whim, to move to Beaumont one New Years Eve and off I went; thank goodness Jamie had a spare bedroom full of junk that I could invite myself to live in. I didn’t see Brandy again after that, until about 8 years later; we ran into each other in the nursery of Calvary Baptist Church of all places, our kids were in the same class. This meeting led to Myspace and Facebook friend requests; isn’t that just the natural thing to do after running into an old friend after being apart for 8 years? Through these sites that bring so much drama to most people, and have brough that for myself from time to time, we got to slowly know each other again. I thank God for all roads leading to her being in my life at this moment in time. I remember thinking how grown up she was, being married, having two beautiful children and owning this fabulous ultrasound business; little Brandy had turned into a fabulous adult.

When we found out we were pregnant she immediately offered her services. She told me that we could come in as often as we’d like to see our little one and we took her up on it pretty soon thereafter. Everyone at work had me panicking about being pregnant with twins because I had gotten so big in the beginning, so I quickly asked when she could squeeze us in; had to make sure there was only one in there! I can’t express the amount of relief we felt when we saw there was only one, after all, we don’t really have the space in our house for one baby, much less two. All we saw at that ultrasound was a healthy baby with a fast heart rate and put what we thought was our biggest concern to rest. Knowing what I know now, I can see his anomaly in those early images; it’s just not something any of us were looking for.

As hard as it was, I resisted the urge to bother Brandy about coming back in every single week; I was actually able to wait until December 23rd. My sweet friend, Stacie, came up with a wonderful gift idea for Aaron for Christmas and it included Sneak a Peek. I went in that day to create a once in a lifetime gift for my husband that would lead to our best Christmas ever and a gift that only I could give him; finding out the gender of our baby. I was trying my hardest to get out of the house on time, but Aaron and Aaden kept finding ways to stall me, not intentionally but just in the way a husband and child can do. As I finally made it to the car I had to text Brandy to let her know that I would be late because without yelling at Aaron, “I am going to be late for my ultrasound”, and blowing the whole gift, I could not seem to get away from my house. She was as laid back as she’s always been and told me it was fine that I was running behind. I got there and she executed our plan beautifully. She turned off the big screen so I couldn’t see a thing and referenced the baby as an “it” throughout the scan, I was a little nervous that I might somehow cheat and peek or she might slip up and say, “he” or “she”; anyhow, we both made it through with very little effort. She kindly printed images with the appropriate body part labeled and one image that will forever be in my mind; my sweet boy stretched out, long legs slightly bent as if he’s truly relaxed and his long beautiful arms gently laying by his side. She sealed these priceless images in two envelopes and handed them to me so I could wrap them for Aaron and I to open together on Christmas morning; time moved like thick molasses from the 23rd until the 25th, but I didn’t cheat! Aaron was working this Christmas, which meant he wouldn’t get home until 5:30 on Christmas morning. As I was lying in bed, too restless and anxious to sleep, I decided I would get up at 5:30 when he walked in so we could open our gift then. I couldn’t stand to wait any longer. Keep in mind, I never get up when he comes in from work; I cherish my sleep, but this couldn’t wait! I will never forget the way his heart started pounding as he read the note I had enclosed about the gift he was about to open, I could visibly see his chest moving with each beat. I let him know what I had done earlier in the week and promised him that I didn’t know either, he tore it open like a little kid and we were both shocked to see, “it’s a boy”; thrilled but shocked. We had convinced ourselves that it was a girl so we weren’t ready for that, so many things were so different about this pregnancy that I kept telling myself that this one must be a girl; I was clearly wrong, there was no denying the fact that this baby was a boy. I already had things planned out in my head, I would bake cupcakes to reveal the sex of our final child and my good friend, Lauren, offered to bake them for me; we all know if I bake something, it more than likely won’t get eaten. As Aaron headed off to work on Christmas night, the kids and I headed to Lauren and Shane’s house to watch Lauren bake our blue cupcakes; everything about this baby’s reveal was full of excitement for me, I will always cherish that. I have Brandy to thank for this.

At the time I went in for that ultrasound, Brandy kept telling me that Aaron and I should come in the next week to actually see him. She kept commenting on how active he was. At one point, I had my hands under my head and she said, “it’s laying just like mommy” and I wanted to cheat and look so bad. After the Christmas dust had settled we asked her if Tuesday would be a good day for us to come in and she didn’t mind at all. Little did she know that I was bringing a zoo with me, Aaden, Kamryn, Mom, Amber, Jae, Reagan, Kennedy and Amanda; doesn’t seem like a ton of people but when you have four kids in a setting like that it gets chaotic. We all sat and enjoyed watching him hide; the little stinker wouldn’t uncover his face. Brandy couldn’t get a measurement of his head to save her life because he kept positioning himself in a way that made it virtually impossible; as frustrating as it was then, I’m thankful that she couldn’t see what was really there. She printed us several pictures, gave us a disc with the images on it and a DVD with the entire session for us to be able to watch for years to come. One of the first things Aaron did after finding out about his birth defect was plug that DVD in and watch him, I couldn’t bring myself to watch; broke my heart. Because of Brandy, we have those memories that we wouldn’t have otherwise.

One of the first things Dr. Sherman said to us when she found out that we had been to Sneak a Peek to find out the gender just a little over a week prior to the ultrasound her office performed was, “she should have contacted me, she should have alerted my office”. Let me say this as loud and clear as I possibly can, I thank God that she didn’t. What if Brandy had seen our baby’s anomaly on December 23rd? What if she had notified Dr. Sherman’s office? What if she had overlooked it on the 23rd but noticed it on the following Tuesday during our session? Aaron and I would not have the amazing memories that we have of watching our son develop. More than likely Dr. Sherman’s office would have contacted us before the holidays letting us know that Sneak a Peek had notified them of some concerns they had surrounding our ultrasound; what is now remembered as our favorite Christmas yet might have been completely shattered by worry. I know a medical professional might not see it this way, but I am thankful that my dear friend Brandy was unable to detect his problem, the memories she has given us are ones that will forever be in our hearts and minds.

Once we discovered that our son had anencephaly I wanted to contact Brandy, not to ask her if she had noticed it and not shared it with us, not to voice anger for her not detecting it; just to thank her for all she had done for us. I don’t know why, but I kept putting it off, I thought of it daily but I just couldn’t make myself contact her. I think it was about a week after we found out that she contacted me, my heart sank. I don’t know why, I don’t know why I was so nervous to hear what she had to say. Those concerns were laid to rest when I read the words that were becoming so familiar to me, she loved us and was thinking about us, she was sorry for the news we had been delivered and didn’t know what to say; finally she said, “I just want you to know that I am here any time you need any thing and any time if you decide you want to or need to see your lil guy I am here”, I already knew this was how she felt, but to see the words made my heart feel so good. I set up an appointment with her on the following Saturday, a time when many of our family members could join us. This appointment was very special to me, our family from the Baton Rouge area was able to come in for it; this included my Nana. Not sure why, but it’s so important to me that my grandparents be a part of my children; I guess that’s how everyone sees it. One of the things that weighed so heavily on my heart when we found out we were pregnant was that my Paw Paw would never get to rock this baby, now I’m a little jealous that he’ll have far more rocking time with him than we will.

We arrived a little bit early for this appointment, odd for my entire family, but Brandy was coming in just for us and I didn’t want to keep her any longer than necessary. I was so uneasy about this one, I hadn’t even been able to sit and watch the past ultrasound without losing it; how in the world was I going to hold it together for a live viewing? Would my parents be able to hold it together? Would we all just be a total mess and leave poor Brandy sitting there wishing she hadn’t signed up for this? I hesitantly crawled up on the mattress while my family settled into their spots on the couches; I had a sick feeling in my stomach. I was joking around about how awful my toes looked and that I was in desperate need of a pedicure; what I really wanted to do was crawl into a hole and not go through with this. I sucked it up and somehow found joy in it all. The minute she put that thingy, for lack of a better name, on my stomach against the warm gel I felt amazingly peaceful about all of it. I was just ready to see my little boy and so thankful that I had a dear friend that could provide that for me. Over the past couple of scans we have realized that Thomas hates ultrasounds, he absolutely detests them. He refuses to cooperate and I have to say I love that about him. I love that he’s got personality among all the vital things he’s missing. He keeps his hands over his face and will occasionally lift one of them as if to say, “There, now leave me alone”. When he doesn’t have his hands over his face, he’s got his face buried to the point that we just can’t see it. He shows us his “moon” quite a bit; I do believe he gets that from his brother; both of my boys are super proud of their booties. At one point, he was stomping his foot as if he was throwing a temper tantrum; it was fabulous. Most mommies don’t love a temper tantrum but I have to say that’s the sweetest foot stomping I’ve ever seen. His muscles are so defined and he appears thick and healthy. He was trying his best to get his fingers in his mouth and at one point he had success. I think the hardest thing about these ultrasounds will be that he appears so healthy, he appears complete until we catch a glimpse of the portion that is missing, watching him wiggle and throw fits makes me feel that he should be born perfectly normal. Staying in touch with reality during these scans can become increasingly difficult. There was one moment where I had to fight back the tears, just when you think the 3 year old tyrant in the room isn’t paying attention I hear his sweet voice yell, “look, that’s my brother or sister”; talk about ripping your heart out. All this time I didn’t think he was paying us one bit of attention and without prompting he announces to the room that we’re looking at his little brother or sister. This was between the dust angels he was making on the floor and whacking unsuspecting victims in the knee with a hammer; he’s just so innocent, he doesn’t even realize the impact of what he’s saying. I think through all of this I have been hearing people talk about my strength but not believing it; I was truly amazed at how well I handled this day. I was amazed that I made it through the entire ultrasound without breaking down. I was amazed that I was able to point everything out to Brandy without crying, we just discussed it as the factual situation that it is. I was amazed that when she handed me the 15 images that she printed for me, I was able to go through each one with my family showing them the defect that was ultimately going to take his life. I truly don’t know how the rest of the room handled it, I don’t know if anyone else shed any tears; I chose to focus on the happy thoughts of my boy. I focused on the fact that he’s funny, the fact that his tiny hiney isn’t so tiny, the fact that he’s incredibly long and so active and ultimately that he’s alive in me; I am sustaining his life in the best way I know how and I love that I’ve been given that responsibility.

I don’t have any way to thank Brandy for all she has done and is doing for Aaron, our family and myself; she will never know what it means. In so many ways we are blessed, we have been handed a very difficult situation but things keep lining up that make it easier to bear. During these sessions we get to pretend that he’s “normal”, we get to see him the way we would love to see him on the day he is born; I cannot put a price tag on that.

We ended this day extremely late but in the best way possible, with family. Dad was gracious enough to give Aaden his very own harmonica, which oddly enough I enjoy listening to him play. The things that once drove me nuts are music to my ears. Don’t get me wrong, he still drives me bonkers, but I find joy in many of the things that used to send me sailing in frustration. Love your little ones!

Wednesday, January 19, 2011

01-19-11 / Two Weeks Down....

01-19-11 / Two Weeks Strong

It dawned on me today that it has been two full weeks since we got the worst news of our lives. When I mentioned it to Aaron he argued that it was three weeks so I checked my calendar to make sure I was right and I was; that tells you how long these two weeks have felt. It’s truly amazing how you lose all track of time, it feels like it’s standing still and we occasionally wake up to realize that life is still going on around us.

This morning was harder on me than the last few mornings. For the life of me I couldn’t figure out why I was so upset. I spent most of my shower crying and trying to picture my little one to the best of my ability. I’ve seen his images and he’s beautiful to me, long arms, long legs, big feet and a nice round belly; how is it possible that he’s not complete? I do not get it. If the doctors hadn’t shown me the specific problem area I would still think he was a perfectly huge and healthy baby boy. I can feel him in my arms, literally. I can smell the fresh newborn smell and I can even smell those wipies they give you in the hospital; they smell amazing. I was so sad when we ran out after Aaden was born; I tried to purchase them with no success. I don’t know if my heartache would be worse or a tad easier had I not already experienced the unexplainable joy of giving birth to a healthy baby. I know how things could and should be; I remember it like it was yesterday. I want that again. I don’t want to wait for another pregnancy; I want it with this baby. How in the world am I going to handle going in to have a baby and coming home empty handed? How do people do that? I will endure a painful operation that requires weeks of rest to heal, at least two nights in the hospital eating chicken broth and stupid green jello (they can’t even be kind enough to bring red), I will lay in my room hearing other newborns cry and other Moms, Dads, and family members going on and on about their latest addition to their family; for what? To come to my house, with no distractions, empty handed and worst of all with a very empty heart. I want to wake up from this nightmare. I want it to end. I don’t want to live through that pain and suffering.

Today was Aaden’s “well” visit for the big number 3; I felt like the worst mom in the world because I had forgotten, in all the madness, to make his “well” visit appointment. I called Monday, a week after his birthday, and they scheduled him for today. Keep in mind, I’m the type of mom that calls a month ahead to schedule these visits and I always ask what immunization he will be receiving so I can educate myself on it prior to him receiving it; I had done none of this. I did cut myself a break this time, it’s been a rough couple of weeks and prior to these weeks I was just insanely busy. Aaron and I knew that today was the day we had to break the news to Dr. Derrick that our baby would be born with anencephaly. Let me rephrase that, today was the day HE was going to have to tell Dr. Derrick because I, being the coward I am, was going to hide at work and let Aaron go it alone. I finally realized why my head was spinning the way it was this morning, I knew it was selfish of me to force Aaron to face our very special pediatrician alone. I knew I was going to have to go to this visit and see the “look”, the one I’ve avoided so well; the one that says, “Oh Dear God”; I wasn’t ready for that. Dr. Derrick was my pediatrician from birth until I was way too old to be sitting in a pediatrician’s office; I think it’s time to go to a big kid doctor when you can drive yourself. I still call on him when I’m sick. He’s like an extra Paw Paw, he loves our family and I just really didn’t want to share this devastating news with him; not to mention I haven’t had to share the initial news with anyone face to face, I’ve done it all through writing. Needless to say, this was a long day of anxiety over how this 2:30 appointment would go, on top of blood work and a shot for my boy we would be sharing our oh so sad news with a person that will care so much that it hurts.

I got myself ready and loaded up the car to head to Orange this morning, a drive that is proving to provide me time to cry before having to face everyone. My sweet friend, Jessica, made me an amazing CD that I will always cherish and I listen to it every single morning on the way to work. I always play number two on the disc first. I always want to hear it but it always makes me cry. It is the song written by the author of the book I’m reading and the song is entitled, I Will Carry You; the words proclaim exactly that. It comes from a mother who is destined to lose her baby and she sings of how she will carry that child while her heart beats here. It’s a song designed to show me that Jesus will carry me through this and for the rest of my life because I am a child of God and I am loved very much. Now you see why I play it first, it gives me the rest of the 30 minute drive to cry my eyes out and get my act together just in time to walk in the doors of work. I made it through my day pretty well I think. I saw many of my kids today, which is a huge improvement. I was able to laugh with them and hold their hands as we walked down the hall, which I wasn’t sure I’d be able to do. You just never know how you will respond to other children in a time like this. I didn’t know if I would resent them or if I would love them the same way I always had. Turns out I still love them! They still drive me nuts and I still want to stuff my head in a pillow and scream after I’m done with Kindergarten groups, but that just means my normal life is coming back. I enjoyed their silly stories and several of them told me how much they love me and have missed me; I think most just missed my treasure box but I’ll take what I can get. I’ve had lunch in the teacher’s lounge the last two days, which is also a huge improvement; the slow cycle of pulling myself back into life unfolds!

That dreaded time finally came around, 1:45, time to pack up and head to Beaumont to see Dr. Derrick. You have to realize that this man is in his 80s, he’s no spring chicken but he loves his babies. When Aaden was born we chose to go with another doctor in Beaumont, huge mistake. I just knew he seemed old when I was a kid and retirement must be in his near future; I didn’t want to switch pediatricians mid way through Aaden’s younger years. After awful experience after awful experience with the dumb doctor we chose when Aaden was born, we finally switched and haven’t regretted it yet. When we saw him at first we asked him when he planned on retiring and his response to that was, “when you read my name in the obituaries, you’ll know I’ve retired”; oh how I love this man. He’s a Christian man that just loves what he does, which so happens to be providing amazing medical care to my son. Our visit went as it always does, he kissed and hugged Aaden, gave him a sucker, bragged on how healthy he always is, spoke of his amazing vocabulary and language abilities and joked around with us about how huge he is; not really a joke, he’s a huge kid. I knew he was about to leave the room to prepare the shot for Aaden and I had to tell him; I knew once Aaden got that shot there would be no more talking over his screaming. I had to force the words from my face, I honestly thought Aaron would be the one to tell him but he didn’t seem to be acting fast enough so I jumped on it. He was in the middle of writing us a new prescription for Aaden’s eczema and I blurted it out, it didn’t flow as well as it seemed it would in my head. It was all choppy and honestly I think I sounded a bit dumb. I was watching his face though, I wanted to see what a doctor’s reaction would be; it was just as I thought it would be, awful! He stopped in the middle of his writing; never raised his head and he honestly had a look on his face that seemed a bit confused disbelieving. He stumbled over his words but eventually the first thing he said was, “anencephaly?” and that was it. I said, “yes sir” and that’s all I said. It was so odd and uncomfortable, not how our conversations usually are. He finally gathered himself and asked us if the doctors had given us any idea as to what they felt the cause was; of course we told him we weren’t really sure because it seemed the medical profession isn’t really sure. I had a tiny bit of hope that my much older and much wiser pediatrician might have some type of hidden answer for us that these younger doctors didn’t have; no such luck. I really think that was just the only thing he could get to come out of his mouth because he agreed that there is no “known” cause. I was a little disappointed, not sure why I was thinking he would have the magical answer but I did. We chatted for a minute and he hugged us both and assured us that if we just needed to talk we could call him day or night, which I know he means since he hands out his home number like candy; what a good man! He came back in joking around with a shot in hand, told Aaden a mosquito was going to bite him, stuck my boy and he began to scream bloody murder; the tension was broken, it was time to comfort Aaden. He squeezed us one more time and kissed my cheek before he walked out of our room and that was it, another dreaded moment down, tons more to go.

All in all I don’t know how I feel about this day. It will end on a high note, watching TV with my family then off to bed to wait for another day.

Tuesday, January 18, 2011

01-17-11 / A Full Weekend....

01-17-11 / A Full Weekend

Why has it felt like time is standing still until this weekend? It seems as though we’ve been walking in place for the last week and a half and I’m finally looking forward to a long weekend of doing whatever I want to do, and it flies by. This journey already seems so long but at the same time I feel like we were sitting in Dr. Sherman’s office just yesterday hearing those awful words come from her mouth. The combination of good days with bad is beginning to run together; I can’t seem to sort through them as separate entities, appreciating each one for what it is. As I write this I have allowed an entire weekend to slip through my grasp, I was so busy all weekend that when I did have time to sit and write I was just too worn out. Please be patient with me as I backtrack through the last few days as I don’t want to forget any of it.


Considering how tough the week had been I decided I would start this day on my knees and consequently on my face. I was in my living room ironing my pants on the floor because I’m too lazy to get the ironing board out in the morning; I decided I needed to stop what I was doing and just pray over this day. So I laid my face on the warm carpet, where I had been ironing, and I began begging God for a good day. I just wanted to feel normal. I just wanted to have one day where my mind was clear and genuinely happy. Friday was that day. I decided that since I was feeling pretty on the inside I would actually get dressed, put my heels on and feel pretty on the outside. My typical attire for work is a West Orange t-shirt, jeans and tennis shoes; after all I do walk miles and miles every single day while I’m there. It is so out of the ordinary for me to be dressed up that when I walked into one of the first grade classrooms one of the little girls turns around, with big bug eyes and says, “wow, you look really pretty today”. It’s really sad when a first grader notices the fact that I actually put some effort into my appearance. As I made my way down several halls, which I hadn’t done the past few times I drug myself to the school, I slowly realized that my day was going to be as normal as possible at this point. I was able to talk about little baby Thomas without crying, I was able to watch other people cry over my pain and I didn’t shed a tear. I was feeling quite accomplished. Maybe I was starting to get better, maybe I was starting to heal and move on to the next stage of enjoying my pregnancy and loving my baby as much as possible until the day he’s born, most of all maybe the uncontrollable sadness was beginning to fade. One thing I love about my job is that people aren’t pretending I’m not pregnant. I think I expected other people to just ignore my bulging belly and go on about life as if there isn’t a life moving inside of me. One thing that stood out to me Friday was that my assistant principal came in with banana nut bread that she was guilted into buying, sat it down on the desk, went on to talk about how much she hates bananas then proceeds to tell Judy and Nan she got it for them and points at me and says, “and you, feed that baby”. I think some people are afraid to acknowledge that he even exists and I honestly didn’t know how I would feel if people drew attention to him that way; but I can honestly say, it felt good.

My day went on as if my life was good. I had very few “sad” encounters and the ones I did have came from people’s hearts. These are people I see every single day and they are broken for me, that remains such an amazing feeling. I know people don’t want to make me sad, I know they’re just sad for me and don’t know any other way to handle it; the good news was, I had found a way to talk to others while they cry over our loss and hold back my own tears. As a person that hates to cry, this is quite the accomplishment. Aaron and I had corresponded as much as possible throughout the day and it seemed his day was going the same way; we were both having a good day which meant we will be able to truly enjoy our evening together. My parents came over for dinner that night, a dinner that our sweet friend had provided, and as we were eating my mom said this was the first day she had gotten out of bed at a decent hour and didn’t have to force herself to get up. It seemed the whole family was beginning to adjust to this new path in life that we have all been chosen to take. I think we all agreed that on that day we couldn’t cry if we had to, oh how we appreciate the tiny things we once took for granted. As I was getting my plate prepared and coming to the table with it I recall my dad saying, “so, he’s moving around quite a bit?” and I told him it’s constant but especially when I eat, then he said, “can we feel him yet?” This is the closest I came to crying that day. I don’t recall him ever asking to feel Aaden move when I was pregnant with him, not because he wouldn’t have loved to but it’s just not something men think about; this made it even more clear to me how lucky I am to be the one chosen to carry him. Everyone wants to be a part of him from this moment forward because these are the little moments we have with him, but since I’m his mommy I get to be a part of every single part of his life, no matter how short it might be. My parents took Aaden and Kamryn home with them that night because Saturday was another big day for us; we were going to meet another girl that walked in our shoes in 2006. Aaron and I napped on the couch for a bit, woke up to Nancy Grace’s “goodnight friend” and decided to get up and go to a late movie; something we never get to do anymore. I have to say, from start to finish, Friday was not only a good day, it was a great day.


What a nerve racking morning. We were nervous for many irrelevant reasons but mostly for the obvious reasons; we were about to drive to someone’s house we’ve never met and ask them to pour out their heart about the most painful time in their life. Not fun! We were running late, on Bush time as they fondly reference it at work, this didn’t help the level of anxiety. We did decide to go more casual to this meeting than we had to the meeting with the previous couple, live and learn. Aaron actually put on the t-shirt that he wanted to wear to the previous meeting as if to say, I dare you to tell me to change clothes this time. We got the GPS all lined out with the address and off we went. They have one of those houses, like ours, that GPS doesn’t really like. We went so far out of the way; as we were circling and “recalculating” as the GPS lady likes to say, I began to get a feeling in my stomach that maybe this wasn’t meant to be. Maybe we weren’t supposed to be meeting with her on this particular day. I just didn’t have a peace about it for some reason; maybe it was because I knew I would be hearing things that gave me a glimpse into the reality I was facing. It took us a couple of hours to even approach the topic of her son that was born in 2006 with this same “anomaly” but once we got started, we talked for several more hours about her ordeal. Throughout our discussion we heard parts of her story and she heard parts of ours. At times they were very much alike and at times they were very different. Ultimately the end is the same. If it is God’s will for our baby to continue on this path and be born with this thing that makes him “incompatible with life”, no matter what the guts of her story was, the final chapter was going to be the same. One thing I know we both took from it was the comforting fact of how peaceful it is. The fact that the only time we have with our son will be filled with happiness and peace. He will never know pain, we will never have to wipe his tears away, we won’t have to sit back and watch him make poor choices that we want so badly to keep him from making, and our only memory of him will be one of peace and joy. Sadness will be there too, I’m not diluted enough to think that we won’t be painfully sad, that we won’t endure the highest level of physical and emotional pain possible and sob many tears; but our only memory of him will be that he brought us joy and that his entire life here was one of innocence, joy and love. I don’t really know how we felt after our visit with her, we saw our future in that visit and we both had mixed emotions. It had nothing to do with anything she said, it had everything to do with the reality we were facing.


Our Sunday started out like any typical Sunday at the Bush house, we were running on Bush time which meant we were running late. The devil was really on us that day, for reasons I won’t disclose because they’re not important; just know, we were continuously saying, “we will be at church this morning no matter what”. You know it’s a rough morning when you’re pep talking your way through to the next step. It reminded me of Aaden a few Sundays back when he was having to amp himself up for church. He had a rough Sunday the week before and as I was driving us to church I could hear him in his seat saying, “I’m not going to cry, I’m going to play with my friends and share, I’m going to go to my class”; that’s what we sounded like. If we were as sweet and innocent as he is I think we would’ve walked around the house saying, “no matter what is being thrown at us, no matter how frustrated we get, we are going to go to church and give thanks to the God that is holding us like his two babies through this difficult time in our life”. We made it, late as usual but we were there. Just the same as last week, the music and sermon were meant for us to hear. I think we both left feeling better than we had going in. After church I met my girls for lunch at Tokyo, which is never anything short of fabulous. Good food and good company equals a nice Sunday afternoon. They will never know what it meant to me that they were willing to drag me out of the house if necessary to get me away from everything for a little while; at that point I was so thankful for friends that understand me and want to be there for me and also for Sushi. After a very short Sunday afternoon nap we got ourselves together and headed to dinner with our WT gang, this is our group of friends that we’ve had for many years. We haven’t gotten to hang out in quite sometime and it was nice to just sit and laugh with them. Everyone has a group filled with “those friends”, the ones that sit around talking about mindless things that make each person laugh until it hurts; these are “those friends”. I won’t even get into the discussions at the table but it just felt good to laugh, no matter what the topic.


Today we have moved back into the “eh” stage. It hasn’t been an awful day and it hasn’t been a good day, just one of those days that I could stay in my pj’s all day and never even look out the window. This is pretty much how the day went. Aaden spent the day in his own world, which is entertaining to say the least; it’s better than HGTV. Aaron and I spent the day on each other’s nerves. He will probably be mortified to read this but we are human, throughout this entire ordeal we have been so careful to guard each other’s hearts and I think today we just dropped that ball. Don’t worry, it has been picked back up and we’re back on track. We just had an “off” day. “Off” days weren’t so hard before this happened, I’m not used to needing someone, I’m not used to relying on someone else to determine how my day will go; it is still hard for me to grasp. My dad stopped in with some chicken and dumplings that Mom had made and it was so nice to see him. I had just seen them on Saturday but for some reason I long to see all the faces I love every single day. Even if we don’t say a word, just seeing their faces does me some good. I do remember as he left he said, “I’m glad y’all (meaning Aaron and myself) got to spend this day together” and I thought to myself, if you only knew. But I am glad we had this day together, I’m glad we were able to sort through some painful things that had to be addressed and now I’m glad that’s over.

There are many things this weekend has shown me. I am more thankful now than ever before for my support system. We have so many people that love us and want to walk through this with us, side by side; not just to be there in the midst of the goings on, they genuinely want to be there to take our pain away. I am thankful for my husband. He grieves with me, he wants to be a part of every step of this process, he is losing a child too and is feeling the same pain I’m feeling, he is the only person that truly knows how my heart hurts right now and he is more than willing to tough it out right by my side. I am thankful that I have a Mom, Dad, Sister, Nana, Aunts, Uncles and cousins that are walking through this with us step by step. They check on us daily, it’s never about the pain they’re suffering; it’s always about making sure we’re ok. I know how they all feel, I know they all love this baby and I know they all want to hold him and love him until he outgrows their laps; they have pain too but they never bring that up, they’re just here for us and with us. Ultimately I am thankful that I have roots that are grounded in a faith in God. I’d have to say that having that foundation has made this journey just a little bit more bearable. The fact that I was taken to church every single time the doors open (weddings and funerals included), forced into Vacation Bible School, where I spent most of my time in my dad’s office, made to go to GA camp even though I didn’t want to sweat at the encampment in Newton and thought it was stupid that we had to wear one piece swim suits with a shirt over them if we wanted to swim; I’m thankful for all of that. I had many years where I didn’t know my left from my right; I was in constant turmoil and spent much of my time anywhere but the church. I have some stories that would make you wonder how in the world I am where I am today; my answer to that is seed that my parents planted long ago that formed my roots. In a time like this, you go where you’re comfortable. Without that foundation I don’t know that I would have half the peace I do today. I am able to finally put the abstract thought of the power of prayer into a tangible form. I don’t know that I fully believed in the power of prayer until Aaron and I were faced with this situation; it is something that is physically felt and forever appreciated. So thank you Mom and Dad for dragging me to church and instilling a faith that I need now more than ever.

Monday, January 17, 2011

A day filled with anger.....

01-13-11 / The Anger Has Unfortunately Set In

Discouraged. Angry. Hurt. Sad. Lost. Confused. Helpless. These are my words of today. I was up by 5:00 to get myself ready for work and I was doing ok, my shower went as usual, tearful but came out refreshed; from that point on it was downhill. As I walked around the house aimlessly trying to figure out what I needed to do to get Aaden and I out the door I realized I couldn’t even figure out how to pack his lunch. Matter of fact, we hadn’t even found the energy or desire to go to the grocery store so I don’t even know if there is anything to put in his lunch box; it might be an assortment of poptarts, gummies and cheetos. Talk about feeling like an awful mother, I don’t even have anything of substance to put in my child’s lunch box for school. Since the mere thought of packing a 3 year old’s lunch was more than I could handle I began to question how the rest of my day might turn out. I decided to walk away from the tough task of packing a lunch box and focus on getting his backpack ready; this consists of packing his clothes for the day so my parents can get him dressed for school. Guess what, there isn’t a stitch of clean laundry that would be appropriate for this weather. I even considered digging his jeans out of the hamper but that’s really just gross so I walked away hoping some clean clothes would appear after I put my makeup on. There is a task that should be easy, applying my face, something I could do in my sleep; not today. I sat on the floor in the bathroom as I do every morning because I’m too lazy to stand up to put my makeup on. As I sat in front of the mirror I saw just how sad I look. I’m physically frowning, there is a difference in simply not smiling and actively frowning and I was frowning. I didn’t even realize it but once I saw it I could feel the weight of my face, it’s like there was a string attached to each side of my mouth and someone had attached a weight to each one; my whole face just looks sad. I tried with everything within me to get it in gear and head to work but after an hour and a half of trying and crying I caved in and text Judy to let her know it wasn’t going well at all. I’m so sick of those words. I’m so sick of people asking me how my day is going and I send back, not good at all. Will I ever just be happy again? Will I ever feel more good than bad during a day? Will I ever be the person that walks around with a genuine smile on her face again; greeting everyone she passes? I’m beginning to get very discouraged in thinking I might not have that ever again. Wishing I hadn’t taken that happiness for granted when I had it.

My job is such a blessing right now and I feel I have expressed that in my writing. I love my coworkers, I love my children, I love my boss, I even love my classroom that everyone else seems to find bland and boring. One thing I feel I need to share is what my job consists of. I don’t have the luxury of hiding in my room all day; I am a Speech Therapist, not a classroom teacher. This job requires that I leave the comfort of my room to pick my kids up, spend 25-30 minutes with each group, leave again to walk them back to their class and then off to pick up the next group. This cycle continues all day long. On a good day this is so fitting for me, I have always talked about how much I love that I’m not stuck in one room with the same 20 kids all day; what I would give to have that right now. Instead, I have 43 kids that will begin to question me about my unborn child. I have to walk out into our huge building every 25 minutes to see new faces each time. I’m typically so extroverted and always have something to say to each person I pass; now it’s a labored effort to just work up a fake smile. I haven’t even been able to see any of my kids yet. What will I tell them when they ask about the baby that they know is another boy? The last time I saw them we were talking about how Mrs. Bush was going to have another wild boy on her hands, I wish I could relive that Monday for the rest of my life. How will I ever be able to sit in another ARD meeting with a dumb parent that cares so little about their healthy child without voicing my disgust for them? There are more new hurdles presenting themselves daily and it gets so frustrating. Just when things start feeling somewhat normal I plow into another brick wall.

Tuesday was so good, I truly enjoyed being in the land of the living again. Wednesday was another very hard day. I sat in my truck in the parking lot of work for a while before building up the courage to walk in; I was already late so I figured what would a few more minutes hurt? I really don’t know how long I sat there but I know it didn’t feel long enough. I walked down the sidewalk as slow as the freezing cold weather would allow and text one of my coworkers to please open the locked door for me; I was dreading her face, as I hadn’t seen her on Tuesday. Each initial meeting with each coworker is going to be this way, oh the long road of first encounters that are in my future. I could see the pain on her face when our eyes met. We work right across from each other and see each other daily, I know she hurts for me. She didn’t want to make me cry but honestly on that morning I think anything would have made me cry. I don’t even know that my tears in situations as that come from sadness, I think they come from love; part of me still can’t believe how much everyone just loves me. Another one of my dear friends on my hall text to ask how my day was going and all I said was that I was at work and it wasn’t going well; next thing I know she’s in my room and we’re hugging and crying. Another coworker brought me a prayer cross to hold in my hand, it’s handmade and beautiful. Another dear friend had a candy basket sent to work for me, she knows me well enough to know not to send flowers, candy is much more useful. At the end of the day one of my close friends made the long trek to my room where she held back her tears as long as she possibly could but by the time it was all said and done, there we were, both crying like babies. I am so blessed to have the people I have. Each person plays such an important role in all of this, some are there to hold me when I cry, some are there to act like total idiots to attempt to refocus my attention, some are there to drop food on my doorstep or to prepare a meal for us so Aaron doesn’t have to worry with it, some are there to offer to let Aaden come play, some are just there to say they love us, some are there to ask us daily if we’re up to company until we finally cave in, some are there because they’ve been in this exact situation before and they offer us something that nobody else on earth can and some are there in complete silence, never texting, calling or emailing but they’re praying and that means as much as the rest. Each person is so very important. When I reached one of the all time lows this morning I found emotions within me that I was hoping to avoid. If you’re a person that rides all the rides at amusement parks you know that awful feeling of, “oh man, I shouldn’t have agreed to get on this ride”, that’s where I’m at. Sometimes when you get off those particular rides you are filled with such excitement that you’re dumb enough to put yourself through it over and over again; then there are the ones that you vow to never even think about looking at again. This ride is one I never care to look at again but I’m trapped right at the top.

We took the kids to Gulf Shores a couple of summers ago for our first family vacation and they had a tiny theme park there that we felt we just had to take them to. Aaden was only about 18 months old so we didn’t put him on any of the rides, except the go-karts, which he loved. We came across this cute little train that I thought he would just love, after all, he loves anything with wheels and always had. We put him and Kamryn in the same little car together and off they went, he was happy until he saw that the train was carrying him away from mommy and daddy. Now that I think of it, that must have been scary for an 18-month-old baby, we must have seemed miles away to him. Kamryn did her best to comfort him but they got to their furthest point from us and she started poking her head out of the window saying he’s crying, he’s crying. Even though they were on the tiniest of rides and he wasn’t in harms way, I began to panic. I ran to the little teenager running the train and told him we had to get him off of there; bless his heart, he stopped it immediately and walked across the ride to pull him out and carried him to me. I couldn’t wait to get my arms around him to comfort him and let him know there wasn’t anything to be scared of. I think that must be how my parents are feeling; I think they must be so tempted to pray to God to please hit the switch to let us off the ride. They don’t have that luxury and I don’t think I’ve thanked them enough for staying strong for us; without my parents I’m not so sure we would be able to handle any of this. They’ve been so willing to do whatever needs doing and sometimes it’s just comforting to know that they are there if we need them.

I mentioned that the anger has set in and I want to clarify what that means. I am not angry with God, I am just angry in general. I’m angry with myself for not being able to shake this. I realize it has only been a week but a week of complete horror seems like an eternity; I’m just ready to feel normal. I’m ready to have moments of sadness in the midst of a mostly happy day; I now only have moments of forced happiness in the midst of a walking nightmare. I am becoming increasingly frustrated when people share with me how they think I should feel; I’m sure they mean well but not words that I am receptive to at this point. When someone says, “you need to think positive” or “you need to hold onto the hope that he will be born perfectly healthy” it almost infuriates me. If someone lost their newborn to SIDS would someone say to them, “you just need to think positive”? And why in the world would I hold onto hope that he will be born perfectly healthy? I am well aware that God can perform miracles if that is in His plan, but I am also aware that it might not be in His plan. I don’t think this makes me less of a believer in the power of my God, I think this makes me realistic and is my human way of protecting my heart from living this nightmare in such raw form on the day he arrives into this world. As I’ve stated before, if he is born healthy we will throw a party in honor of the God that we serve, thanking him for saving our son. If he is born as we are preparing for him to be born, we will have already accepted it and come to terms with it. Why on earth would I set myself up for the greatest disappointment that any parent could live through? I appreciate that people just don’t know what to say to me at this point and I’m not trying to hurt anyone’s feelings but if you have only given birth to babies that are healthy, that you get to tuck in at night, that you get to bathe, that you get to snuggle up to and smell the sweet baby smell on the top of their head, that you get to tickle their feet to watch their toes curl, that you get to feel their little fingers wrap so tightly around your giant big finger and ultimately that you get to watch grow into a pre-kindergartener, a kindergartener, a grade school kid, a high school kid, a college graduate, then on to meet the person of their dreams, walk them down the isle, have babies of their own and so forth; I would just appreciate it if the only words you offer are those that say, “I love you and I’m praying for you”. There are very few people that know where we’re at and I don’t wish this on anyone, but please know that we are losing our baby. This is our child. We have been planning for him for almost a year now. We can both feel him move. His ultrasounds show us the form of a human; he has long arms, long legs, big feet and a big belly. He is and always will be our child. The fact that we’ve never held him doesn’t change our love; we still love him just like any parent loves their child that they nurture on a daily basis. He is a person that we love, not just a baby in a story that I’m writing. We cannot think positive right now, we are grieving a loss that no parent should have to. I think we are thinking as positively as our human nature will allow. As I said, I know that people just simply don’t know what to say but please know that there aren’t perfect words; we don’t expect anything profound, just a simple “I’m thinking of you guys” works wonders for our souls.

As I’ve sat yet another long day at home I’ve just watched Aaden destroy my house. There is play-doh all in the carpet and in the cracks of the couch. His bear cave is now all over the living room because he woke up from hibernation and made a grand exit from the cave. He fed himself chicken noodle soup and I don’t feel I need to elaborate on how that went. Now I’m sitting here watching him stab his “cut”, which is his pink knife, into my wall as he declares that he’s rock climbing his way to school. I think I’ve somehow missed the fine line between not sweating the small stuff and losing all control over my child. I don’t know if I lack the energy to fight with him or if I just want to sit back and soak up all of him, the good, the bad and the ugly; mostly good! As I was sitting on the couch feeling sorry for myself I looked at him and whispered, “I love you baby” to which his eyes got huge and he grinned really big, I couldn’t help but swell with pride as I knew he was about to make that sweet face and say, “I love you too mommy” but instead he yelled “I love Santa Claus”! I couldn’t help but laugh out loud and he looked at me and said, “well I do love him mommy.” Thank you Jesus for my sweet boy that loves him some Santa Claus.

Hi-Ho, Hi-Ho, it's off to work I go.....

01-11-11 / A Much Needed Good Day

I find that most of my ramblings are pretty sad and sorrowful and I don’t want to be the sad point in everyone’s day so I will stay up late and report on good days along with the bad. I crossed one of the hardest bridges yet today; I walked into my job and faced so many people that love me more than I think I realized. I brought my trustee sidekick, Aaden, to protect me. As ridiculous as it sounds I honestly felt safe and confident because he was with me, this poor little guy has quite the job taking care of his mommy. If I couldn’t have Aaron there with me, he was the next best thing. My parents offered to go, as I wrote in the previous post, but they have really endured so much already I thought I would spare them this little thing. I had a horrible feeling in my gut when I pulled into the parking lot; I really thought I was going to vomit. This is a place I hold very dear to me, full of people I love so much and here I am dreading our first encounters. I honestly almost drove straight through the parking lot and back to I10 to head to the comfort of my home; I’m so very thankful that I didn’t.

Before we left the house this morning Aaden decided he wanted to bring his giant T-Rex that his Aunt Amber had gotten him for Christmas; I have no energy for arguments so the T-Rex made the trip to Orange. I was hoping we would get to school and he would be so excited to be there that he would forget about his “toy of the day”; I wasn’t so lucky. I had to unload T-Rex first and then Aaden would agree to get out of the car and put his jacket on. Turns out, T-Rex was his own little blessing in disguise. When a 3 year old, that refuses to be 3 because he wants to stay 2, is carrying around a giant dinosaur it has a way of breaking the ice. We walked in the door and I had my “I’m going to be alright” smile on my face and out comes Mr. Smith, my boss and Aaden’s other Paw Paw; I have to admit that same sick feeling overwhelmed me and my instincts told me to run and hide. There was a man waiting out front to talk with Mr. Smith and part of me was hoping he was coming out to greet that man and walk him into his office; it’s amazing how many thoughts run through your head in a split second. The man was standing there with his hand outstretched to shake Mr. Smith’s hand and Mr. Smith walked right by him and right up to me to wrap his arms around me; that’s a boss you simply can’t replace. He then squatted down to get on Aaden’s level to talk to him about his T-Rex, never asking me any questions or making any pitiful faces that would induce tears, he just showered us with the same love he always does. Mr. Smith and the man that was waiting to meet with him along with Aaden and T-Rex proceeded to Mr. Smith’s office, Mr. Smith was carrying that stupid dinosaur like a child on his hip; Paw Paws do that kind of stuff for the babies they love. When Aaden comes to work with mom, he’s the boss, he runs things around there and he loves it. He stayed in his Paw Paw’s office for what seemed like hours to me, I’m not sure exactly how long but Mr. Smith never came and asked me to get my child and the only time he sent him out was when one of the students was getting pops. At one point I looked in his office and he was at his desk, Aaden was in a chair, T-Rex had the other chair occupied and the lady that was in there meeting with Mr. Smith was standing for lack of a place to sit. I’m sure if it would have been a lengthy visit Mr. Smith would have made T-Rex get up, but his patience and understanding with my boy are things I cherish in him. After Aaden spent forever monopolizing his Paw Paw’s time, he got to spend a good amount of time pretending to be a kindergartener. Heather took him on as a new student for a while, she even let him make a snowflake with her class and she hung it right in the middle of the bulletin board in the hall. She said he wanted his snowflake to have triangles in it, which is the only shape he cares to talk about; his has plenty of triangles in it. Needless to say she had to shower him with gifts to make him leave with me, those gifts consisted of a sucker and a pair of scrap booking scissors. Thanks to Heather, the fake scissors we let him play with at home are no longer sufficient. I am thankful that he had such a fun day, I think he thought today was all about him; then again, what day isn’t?

At this point, the ice had been broken! What a relief! Judy had come out to greet us too and walk with us into the office where I spent the next several hours. I couldn’t physically bring myself to walk through the halls; it’s amazing how quickly you become paralyzed in situations like this. It worked out just fine because people came to me. I have to say I only got one really severe look of pity and I know she meant well but that’s “the look” I so dread. The look that says, “oh you poor girl”, I don’t like it. The ones that know me best just hugged me, yelled at me and even had one punch me in the arm; it might seem a bit harsh to some but it made things easier to bear. One of my sweet friends came to see me; I think it took her a while to get the courage to walk to the office because she was simply able to walk in, hug me tight and then had to leave; she was clearly fighting back tears. She told me that she had a little something for me in her room but I was a little scared to go down there because I hate upsetting people. I hate thinking that people are crying because of me; I know I shouldn’t worry about that because they cry out of love for me but it kills me to know I’m the source of anyone’s pain. She assured me that it was safe to enter so I worked up my own source of courage to enter our huge, never ending hallway and walk to her room; that wasn’t easy on me either but I did it and that’s one more hurdle I don’t have to leap over later. The little gift she gave me is a book I will always hold dear to my heart; she’ll never know how much it means to me that she took the time to research other people’s stories and find just the right book for me.

As I was sitting in the office I noticed a little piece of paper taped behind Judy’s head; it was a heart with angel wings and a halo; I couldn’t help but think it had something to do with my situation. I never said anything about it but she finally brought it up and what she said struck me as thoughtful but odd. She asked if the angel wings bothered me; I am not bothered by them, it is quite the opposite; I am very touched that they would do that for my little one and myself. Some might see them as a constant reminder of my situation but let’s all be very honest right now, I have a constant reminder wiggling around inside of me 24/7, there isn’t anything more constant than that. I look at those wings as a reminder to those that aren’t carrying my child, I see them as a way for people to think of me and maybe offer up a tiny prayer on our behalf throughout the day. I love where I work and what we all stand for, a family by choice. We choose to love each other the way we do; we all get under each other’s skin at times but we just truly love each others guts (for lack of a classier way to word it).

I was also greeted with floods of emails concerning a fundraiser that our other group of friends will be hosting. How honored we really feel at this point. These are friends that I’ve had for a very long time and though we’ve been through some rough patches; we love each other and they are here for us now. We have “grown up” together so to speak. Most of us did not meet until well into our adult lives but we were all still very young and very dumb; we’ve all watched each other blossom into what we are now. Anyone that knew us in the past would say that we are nothing short of a miracle. This experience has shown me how much I need all of these people in my life; from my WT gang that I have had for so many years to my work friends that I’ve only had for a short time. I need those daily texts; at this point I need to know the exact moment people are thinking of me. Does that seem a little selfish? Maybe. People will never know the impact that a “thinking of you today” text has on someone in mine and Aaron’s shoes. I’ve sent them myself in the past but I’ve never been in such dire need of hearing those words; I now know how important it is to let my friends know that I’m thinking of them during tough times.

One person said to me today, “other people have it way worse”. This might strike a cord with some of you and make you think, “how dare someone say that to her at this point in time?” but she is so right. Aaron and I have sat and talked about the ways that our situation is still better than that of other people. Our minds seem crystal clear when we talk through these things. God has given that gift of clarity to us. We know that our baby is going to die, there are some moms out there that lay their healthy baby down at night or even for a nap to find them nonresponsive and not breathing; to have and hold my baby for months and unexpectedly lose him would be a pain that I cannot wrap my mind around. I am losing my baby, this is a pain I’ve never felt and I pray to God I never have to feel again; but I am well aware that my pain could be worse. I am well aware that God has granted us peace, comfort (even on the worst days) and clarity of thought to be able to process the hand we have been dealt. I cannot imagine going through this as a nonbeliever; I’m not so sure I had full faith in the power of prayer until this particular time in our lives. I can testify to the fact that we physically feel the prayers, there was a marked difference in our outlook from the time we were facing this alone to the moment word got out; it spread like wildfire and people hit their knees. I know some people just say, “you’re in my thoughts and prayers” because that’s the right thing to say; I’ve been guilty of saying those words and not following through with them myself; but people are praying, we feel it.

Today was not only a good day; I would call it a very good day. I can’t go so far as to say a great day just yet but I know that is coming. There are good days and bad days ahead and those will be there for years to come I’m sure; I know one thing is certain; I love where I am in my walk with God and my relationship with my husband. I love the friends that have been strategically placed in my life and I love the bond we will always have because of my precious baby boy.

Tomorrow is a new day, I pray it resembles this one!