Okay so I quite honestly had no intention of touching this thing for at least a week in order to get back to a semblance of normal. You have no idea what was going on behind the scenes while I wrote. From two poop diapers, one toddler meal, two baby meals, wrestling with Leo on our bed, comforting Ash who got his hand squashed on said bed, hearing Leo laughing and turning around to my 28 ounce water jug being sprinkled throughout the house (the whole thing), reading countless kid books in my happy-insane-librarian voice, snack time, adult feeding time, bathroom break and playing outside... It took me six hours to write less than a blip of what I wanted to say. But here I am, back at it, because of someone who is a part of my heart. My little Asher. I hadn't decided what I'd write about next and I had quite honestly assumed that it would just come to me when I sat down to bust it out---but I made it a point to write this entry on this day. You want to know why? It is the 10th anniversary of World Down Syndrome Day and Asher's first time being here to celebrate it! And what a celebration it is!
Now I will deviate (but only slightly) from my usual sarcastic banter to express how excited and touched I am that there is a day to celebrate my son. Let me first tell you how my little boy came to be...
Around Leo's first birthday, I had noticed some things that were a little peculiar. I was getting fat (gasp!). I hadn't yet kicked the pregnancy weight but the scale was definitely going in the right direction and I had no complaints. Of course after I had purchased some new non-stretch jean shorts, I noticed I had an unhealthy front pooch that was not only insistent on staying, but also inviting friends to live with it. I had put on maybe ten pounds with no change to my diet or physical activity (lets be honest--no physical activity) so I inevitably joined a gym and did a cleanse.
After losing a few pounds in two weeks (I cringe to think about what little Asher was thinking in there), I was at home when I felt a flutter in my gut. My first thought was, "oh how sweet, that feeling reminds me of when I was pregnant." If anyone was there with me I'm sure they could have seen the color leave my face as quickly as my mouth dropped open at the thought. I immediately went to the store and got a box of pregnancy tests (lets be honest again---the cheapest ones they had) and took all three that day. Not pregnant. Phew!
So now that I knew I wasn't pregnant, I went to the old trusty google to figure out what was going on. Diagnosis found! I was having phantom kicking! Or gas! Or I was pregnant! (the last one being totally not the case of course) So I went on my merry way with my phantom kicking and in a way I was kind of happy. I got to experience something that I didn't get much time to when I was pregnant with Leo. He was born so early that I feel slightly robbed of the experience.
After about a week of enjoying my phantom kicking. I was walking around the house and felt something jab my bladder. No phantom kick in the world could be so hard that it feels real. I was also pretty sure that no amount of gas could ever jab my bladder... so off to the store I went! This time I bought the super-lifted, surround sound, extra bass, hydraulics, gold spinners, flashing disco lights pregnancy test. I could have had meals for a week for what those things cost me.
After arriving home, I proceeded to pee on my pregnancy test sticks made of gold and waited. Pregnant. Not only pregnant, this thing tells me I'm +3 months pregnant. WHAT?! Not only am I on birth control (which I take as regularly as I breathe air), I hadn't been horribly sick and rockin' sore ginormous boobs like I did in the first few months with Leo. There was NO way. Until I saw this:
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(notice my name in the corner? like I said...love/hate relationship) |
I was 21 weeks pregnant and had no idea. I was 18 weeks away from being on that ridiculous show where women have babies unknowingly. I mock those women and I almost became one of them!
So now the battery of blood tests, ultrasounds, biweekly OB visits and weekly perinatal/nutritionist visits commenced. I was one busy, diabetic, high-risk pregnant lady. This oven needed a lot of fine-tuning that only a team of medical professionals could handle, and boy did they do just that! After having some minor panic episodes and high blood pressures due to the stigma of reaching my 28th week of pregnancy (just in case you forgot, Leo was born at 28 weeks), my OB recommended I take a chill pill and take time off from work. Which I did so with both feelings of guilt and anxiety. We were just recovering from the financial stress of my first pregnancy/medical bills/MS doctor visits that being a one income household wasn't the best option. My amazing family and friends (that practically are family) decided to step in and help in whatever ways they could and I will be forever grateful.
Fast forward to Asher's first fetal heart echo. We got the unfortunate news that something was wrong with Ash's heart, but they were not 100% on exactly what. Medical jargon was thrown around like rice at a wedding so the initial shock of the news that anything could possibly be wrong genuinely shook me to my core. The initial diagnosis was not good and I remember getting to the parking lot and crying alone in my car. I hadn't even thought to bring anyone to the appointment with me because Leo's had gone so well that I figured I knew the routine and there was nothing to worry about. I had made it past the 28th week and I thought that was the only hurdle I had.
After telling family and friends, I regrettably went back to the ol' google to find out what my doctor had said. From life expectancy not exceeding 7 years to heart transplant lists, I overwhelmed my spirit and truly felt a part of me break inside. This was my baby boy and I couldn't fathom having a child to only lose him again. I was destroyed. My mom opted to pray and I opted to hold whatever hope I could in my heart so that my son would somehow feel my strength and grow stronger from it. I am not a religious person, but I do believe in some higher power. I sent my concerns to him/her/them and went on my way. I had a follow up echo done a month later, and lo and behold the problem was less drastic. There was still a problem---but this one Asher could live with and only be affected in certain aspects of his life. No heart transplant needed!
The following month was yet another follow up echo and all I can say is, boy did we hit the jackpot. My little baby's heart looked better than before. The threat of any immanent problems had waned and I was now confident that as long as I could make it to full term, my baby and I would be fine. I would get to hold him like they do in the movies with the light shining down on my beautifully styled hair and my 20 pound baby covered in cream cheese and jelly looking directly into my eyes with his big baby blues. Such was not the case.
I went in for a routine Non-Stress Test and Asher had failed to pass yet again. These tests measure the heart rate of the baby according to his movements. He had failed five out of six in the past few weeks so my OB and Perinatal doctor decided it was time. He was coming! I called Benjamin (Asher's dad--sorry for no previous mention honey) and told him that today was the day!
I should probably preface this with the fact that I had legitimate concern that I wasn't going to live through my c section. When pregnant with Leo, I could never mentally picture me full-term pregnant. I just couldn't. Chalking it up to a lazy imagination, I didn't think anything of it until after I had Leo so early. During this pregnancy I made sure to picture myself pregnant as to not jinx myself---and I was comforted that I could. I could see me being large and waddling around and it was wonderful. The only problem was that I didn't see myself holding my son in my hospital bed. I couldn't imagine it. It genuinely scared me. As a result, I had cried for much of my c section due to fears that something wasn't going to be right. I had assumed this meant that something was going to happen to me. I really did think I wasn't going to make it through the procedure. I also didn't want to feel like a Crazy Cathy so I only confided this to my parents and Benjamin. I had even written a letter to Leo on my phone while waiting for family to arrive before my surgery. The moment the nurse held my little bundle of sunshine out so I could kiss his cheek, a wave of relief overcame me. I wasn't holding him, but I had met him and that's what mattered.
In the brief moment that I got to look at him, a red flag popped up in my mind when I saw his eyes. I knew there was a rather large possibility that my son had Down syndrome. I also wanted to wait and calm the Crazy Cathy so I said nothing. I poured over the pictures of my son in the recovery room and each one seemed more and more evident of my suspicions. The doctor that administered Asher's fetal heart echo after he was born unknowingly confirmed it for me. You see, we knew they would take Asher away to make sure the right valves shut in his heart and that there was indeed no problems to be concerned about. It was not unusual that Asher was to be admitted into the NICU momentarily. All c section babies are. At my bedside the doctor had stated that they see nothing to be worried about but that he wanted to run a chromosome blood test. He didn't delve any deeper into the subject and left me to recover. But there it was. Confirmation. Something was wrong with my son and the doctor didn't want to tell me.
I was brought to my postpartum room and for an hour I let myself grieve for the loss of the baby I had expected. I just didn't see how this was fair. We had made it. He was only four weeks early and a healthy weight. His heart was fine. I had made it through the c section unscathed. We had crossed all our t's and dotted all our i's and here I was with a baby that many deem undesirable.
And that's why I have sat here today to tell mine and Asher's story---at least the beginning of it. My son is amazing. He is more than perfection and I thank whoever is watching that my son is here with me. I gave myself an hour to grieve for a baby that I thought I wanted---then I pulled up my big girl pants and put on my awesome mama cap and kicked that idea to the wind. My son is beautiful and gorgeous and my everything. He is sweet and innocent and strong. He is my little warrior battling the waves of unintended pity and unwanted sympathy. He is my healthy, happy boy who I was somehow lucky enough to be able to call my son.
World Down Syndrome Day is very important to me for many reasons. The most important is the celebration of the life of my son. It is also a day that brings awareness to the heartbreaking statistic of abortion rates with a prenatal diagnosis of Down syndrome. 92%. 9 out of 10 times, a mother will opt to not welcome someone like my little Asher into their lives. Let me just tell you one thing---he was worth it. Every little bit of scares and fears and facing the unknown. He was meant to be a part of my family before I even knew he would be. He is my missing piece to the puzzle I've been doing my whole life. A child with Down syndrome is not a bad thing. It is a blessing.