Scott was an only child. I, on the other hand, have 3 other siblings, 2 older brothers and a younger sister. At first I thought I would be “ok” having one child, but it didn’t take us long after Adeline was born to start talking about Baby #2. Adeline needed a sibling.
For Scott, it was more obvious – he didn’t want his child to grow up by themselves like he did. Although, one would be surprised knowing Scott is an only child. He doesn’t have the typical characteristics of the “only child” syndrome. Quite opposite actually. Just one of the things I love about him.
For me, it may not have happened immediately, but it didn’t take long to see the interactions my daughter would be missing out in life being the only child. I had a love/hate relationship with my siblings growing up, but it was something I wouldn’t trade for anything. Fighting over toys, clothes (yes, sometimes even physically fighting); competing on various levels; sharing a bed (and even a pillow); becoming best friends, sharing holidays and birthdays together, all of this and so much more is what I experienced from having siblings. Why would I want to deny this from my child(ren)? You are right, I didn’t. So, another child was a comin’.
Adeline was approaching a year old. Scott and I decided to give it a whirl – not go to the doctor – not do anything – just leave it up to the powers at be (aka: God) and see if we would get pregnant. Interestingly enough, I actually got pregnant! I was surprised, very surprised. I knew I was pregnant. After being pregnant once, you just know… I was at a women’s retreat with my church and all of those feelings came back. Yep, I remember feeling that when I was pregnant with Addy and here I was having the same ‘ah ha’ moment. I came home and told Scott and we took a pregnancy test (ok, maybe we took 2 to really be sure). We got confirmation - what I thought to be true, was true. That “pregnant” reading doesn’t lie and it couldn’t be any simpler to do! I set up an appointment to see my doctor, you know, the initial visit. It is starting to become a little fuzzy to me now, but there we were: me, Scott and our little, Adeline. Measurements were taken; the doctor thought maybe I was further along than I originally thought. Then, the doctor got out the monitor so we could see the heart beat, but... Don’t you hate it when you hear that word sometimes? The word, “but”; I know I do. And I do right now, yet again, typing this. But, there wasn’t a heart beat. Dr. Brown checked and checked again. He said our baby lived to be 8 weeks and 1 day old. I remember feeling a bit light headed, my mind cloudy. Addy was being a typical 1 year old, playing, being loud while the doctor tried to explain what was going on. It was all grey (I relate it to a Charlie Brown show…the doctor is talking, but you can’t quite hear him). I was going to miscarry our baby. It’s a strange feeling, when you still have all the symptoms of being pregnant, but the baby inside you really isn’t living anymore. Your mind goes thru some things. It’s difficult to accept it, but you know it is true – I saw it with my own eyes. No heart beat. I had to have a D&C. I wanted to feel ‘normal’ again. I knew it was too good to be true…
One might wonder why I put this part into Graham’s birth story. Well, for me it is obvious, but for others, maybe not as much. You see, if I would not have miscarried, this would not be Graham’s birth story, this would be a birth story of another little baby. It is significant – all of it…the hurt, the confusion, the pain. I do not hold all the answers, but I know God had other plans…
We gave it a little time. I gave it a little more time. And then we decided to move forward, again. Addy was now approaching 18 months old. Such a fun age, molding into her ‘own’ person each and every day. A very strong personality, I might add. Dr. Brown worked his magic and voila, I am once again pregnant. I told you it was magic. ;)
There was some apprehension – would I miscarry again? The first doctor visit at 6 weeks, all ok so far. But in the back of my mind, I am remembering my last baby lived to be 8 weeks & 1 day, to be exact. Dr. Brown made a follow up visit at 9 weeks. I knew he was thinking the same thing as me…let’s check again quickly. There was a heart beat! Praise God! I was past one big hurdle. Now, to get past the first tri-mester and I should be in the clear, right? At least that is what I was trying to tell myself.
We opted to do genetic testing. We did with Adeline too. To us, it was to be proactive, to know what might be in store (just in case), precautionary reasons only. Of course, the thought of something happening wasn’t ‘really’ a thought…or was it? With Addy, it was a rather easy process. This time, we knew the drill and knew what to expect. Well, let me retract that statement. We thought we knew what to expect. Little did we know....something waited around the corner. Something very different than when we did this testing the first time.
I knew there were increased risks the older one gets, but I wasn’t 40, so I didn’t put too much weight on the odds. Scott and I went to Dr. Holcomb’s office for the testing. Let me just say, Dr. Holcomb is a very kind, soft-spoken man who has a gift for what he does. He’s a little older, which we like, as he is very verse on genetic testing, he’s been doing it for years. The kind of man that reminds you of someone who is a really good dad. Yes, all of that came to my mind. Ok, back to the story… After the ultrasound, the doctor wanted to speak to us in his office. Huh? This wasn’t how it worked before. Before, you told us everything looked good and we were on our way. But this time, the doctor wanted to see us in his office? We waited in the training area room for the doctor to meet us. A small square room, a couple tables and chairs along with a few small windows. Sit, not sit, yes, maybe I should sit. Those minutes seemed like a lifetime. So many things rushing thru our minds. Not talking about it because if we said something, then maybe it would be true (what ever that could be, which we had no idea) – maybe if we didn’t say anything, then we didn’t have anything to be concerned about. The doctor informed us that our odds were about 1/92 to have a child with Down syndrome – purely on my age alone, but after this first set of testing (blood work and ultra sound), our odds went to 1/24. Down syndrome? Really? How is that possible? He went over the results and what they looked for, was very thorough and patient with our questions. He gave us our options and left it up to us. We could do an amnio to find out for sure or hold off and do the second set of non-invasive testing. He didn’t expect to see much change in the additional testing, but said it could possibly show stronger signs with another ultra sound. The doctor went on to say that most do the amnio to decide on whether or not to medically terminate. Medically terminate? Um, that was something that never entered my mind. Scott and I were on the same page there. Thank God…literally. This baby was a gift from God and we would not “medically terminate” (aka: abort) no matter what the outcome. We walk away, and I am strong, no tears from me. As we walk towards the elevator to enter the lobby downstairs, I turn and say to my husband, ‘why wouldn’t God give us a baby with Down syndrome?’ NOT ‘why would God?’ I wasn’t sure where my frame of mind was going at that point. I just recall thinking that I am not invincible and sometimes, many times, life doesn’t always give you roses. Scott gives me a quick hug and kiss, asks if I am alright, to which I reply ‘yes’ and we both go to our cars to drive back to work. I open my car door, sit down, turn the ignition and no sooner as I start to drive away, within an instant, I am drowning in my own tears. I can’t keep them back. I am full of emotion, actually, out of control with emotion.
It takes a little while, but I get my composure back – with life, that is. Do we do the amnio? I want to know. I’m a planner. I want to be prepared for what is in store for me, for our family. Scott, I know, wants to do the amnio, he’s a researcher and likes to have steps in place too. But, like the supportive husband he is, he tells me, “it’s your body, your decision”. For that, I am appreciative; thankful.
A lot is weighing on my shoulders. Actually, it feels like a truck load. And I begin my research, my soul searching on what to do next. It’s interesting how one will get unsolicited advice in these areas. I needed friends to listen and support me, but that’s not what you always get. I opted to start being even more selective with who and what I say from that point forward. I start googling on the internet – amnios of women who might have a child with DS. Google can be a wonderful tool or an unnecessary evil at times. This time, I am drawn to a particular site. I read one story, and that was it – I didn’t need any more research. The story was of a woman that opted to have the amnio done. She miscarried. The baby didn’t have DS. My heart was heavy. In my mind, right then, it didn’t matter if my baby had Down syndrome or not. If I made the decision to have an amnio, knowing that there is a slight risk of miscarriage and I miscarried, the guilt would be too much to bear. I knew God was in control of the outcome, whatever that might be and having an amnio wasn’t going to change the outcome.
We did decide to do the second set of non-invasive testing. This time, we would be able to find out the sex of our baby. The ultrasound tech asks us if we want to know the sex and to her we both reply “yes”. She tells us we are having a boy. One would think we would have had a ‘moment’ to rejoice. Sadly enough, we did not. The words go in one ear and almost as quickly as they came in, they go out. We want to know the outcome of this test. Have our odds gotten worse? Again, we were asked to go into Dr. Holcomb’s office to discuss the outcome of the testing. I was more prepared this time, although still sitting on the edge of my seat. Scott, on the other hand, maybe a little more apprehensive…waiting for the doctor to come talk to us, that is. The good news? Yes, there really was good news here, although it was hard to think that at the time. They ruled out any other major issues - spinal bifida, other trisomy disorders that could take the baby's life, etc. We were thankful for that, but scared about the other. Our current odds for having a child with Down syndrome were 1/24, now became less than 1/10. I would like to think I didn’t look like a deer caught in headlights, that my demeanor was settle, but I am not one to hide the way I truly feel (just ask my sister who has always tried coaching me in this area, but to no avail). I guess you can say God blessed me with honest reactions, but once again, I remain strong in front of the doctor, in front of my husband. It still hurts me thinking about that today. We did want a little boy. Scott especially wanted a son. We were just told we were having a son. I wish we would have taken a moment to rejoice. God was still watching over us.
I think Scott actually felt better about everything after this visit. He was able to wrap his mind around the very probable thought that our child could be born with Down syndrome. Me? I am not sure where I was in my mind at that time. Putting up my “front” for the doctors and others, but having a difficult time coping on the inside. I began to pray for guidance and I felt God told me what to do....wait. But, I HATE waiting! I'm a planner, that's who I am, that's how I am wired. But God said wait...
Shortly thereafter, I began researching information on Down syndrome. Honestly, it kinda overwhelmed me and I just stopped. Then, I googled blogs and found this one: Nella Cordelia-birth-story. I remember the day I read it very vividly. It was late on a Friday afternoon. I was at work. Things were calmed down, so I gave myself some down time - most of the staff was already gone and it was just about time to head out for the weekend. I started reading and was glued to the words. This woman speaking words that were so raw; so real. I felt the tears welling up in my eyes; I couldn't stop it. I didn't want to start crying while at work, yet I did. It was impossible to stop them. So many emotions bottled up inside started to release themselves while reading this blog, at this very moment. I was in my office, so surely it would be ok, right? Reading the feelings she felt after giving birth, seeing her child, knowing inside what was true, but wanting for someone to tell her differently. All those things, those feelings - I was worried, would that be me? If my baby really does have Down syndrome, will I be sad at his birth? Please God, NO...I didn't want that to be me, yet I feared it would. But reading her story gave me strength in a strange way...the unknown was out there. As I read and as the tears slowly started to run down my face, all of a sudden one of my co-workers popped his head in my office to say hi. Oh my goodness, I can't turn around and say hi or he will know something is wrong. Something is very, very wrong. I am a strong woman, this I show day in and day out at work. Never have I cried; emotions are kept privately at work. I'm the manager; I have to keep things together, I keep things in order. It’s what good managers do! But how do you say hi and not turn to look at the person? And, so I did, ever so reluctantly. It was Troy, a co-worker and friend whose wife had just passed away from battling cancer the last 6+ years. He was still on leave from work, but came in for a few minutes to take care of some business. His visit was a complete surprise. Obviously, he noticed I was upset and instantly came in my office to ask what was going on. I didn't want to tell him, I even remember saying “you have so much going on Troy, the last thing you need is to be burdened by me”. I remember thinking of how insignificant my story, my ‘what ifs’ seemed right at that time knowing my friend was still in very deep pain. Troy insisted and so I shared our story. He listened and encouraged. He reminded me that God would take care of everything and that I needed to just 'give it to Him'. I left there thinking 'what in the world just happened?' God happened, that's what. God stepped in and ordained that happen-chance meeting. It was exactly what I needed and in a very different way, something I think Troy needed at that time too. To help someone else in need. I get chills still thinking about that moment. Tears, too.
To my surprise, Troy connected me with Deidre Pujols from Pujols Family Foundation. This is a busy woman with multiple children, a husband who is a professional athlete and a huge foundation she's running, but she found time, made the time, to call me. Her words were what I needed to hear, from someone that "truly" knew what this was going to be like for us. While it still wasn't easy for me to listen, I knew God was trying to speak to me through her. She shared part of her story of giving birth to Bella, who has Ds. It's a beautiful story indeed. But honestly, the biggest part I took from that conversation was encouragement no matter the outcome. Her faith was so evident that I could almost feel it coming from her voice to my ear. I know she heard a worried mama's voice when I spoke, but there was no judgement. Just one mama to another, sharing truth, sharing love.
From that point forward, I believe God took the thoughts from my head. For the last 4+ months of my pregnancy, it was almost 'out of sight/out of mind'. I had the typical growing pains of being pregnant (that includes an ever growing belly), but I wasn’t consumed with the ‘what ifs’ anymore. The end result, God knows, I don’t. It felt good to just 'be'....for a little while anyway.
Due date was drawing near and the thoughts started to come back. We continued to have regular check ups from time to time with ultrasounds to make sure the baby was doing ok. The baby was growing. All looked good each time we went. Of course, our odds never changed. I looked forward to going because it gave me another opportunity to see my baby inside me - which always amazes me. Maybe the thoughts were too far out of sight/mind, but that's what I needed to cope with things at the time.
Labor came on so quickly - a bit unexpectantly. It was about 10 days before my official due date. I was about a week late with Adeline and expected to have a similar birthing experience. Up to this point, the progression was very similar. It was a Thursday. I went to work like always. That morning, I started feeling some contractions. Then, I felt some more. At that time, I made a mental note to start checking how far a part they were coming. About every 15 minutes or maybe less at times. Was this Braxton hicks? I called Scott. Then I called my sister who contacted my mom and they were both rushing in from Nashville to try to be here for the birth. I instant messaged a co-worker to give someone a head’s up – just in case. Joan immediately came to my office and asked if we should go to the hospital now. I told her no, I would wait a bit and then she said she would start boiling the water. LOL. Noon was approaching and the contractions weren’t subsiding, so I opted to be proactive and leave work. Joan followed while Kathy drove me in my car. We picked up Adeline from school and went home. I called Scott on the way home and told him he should come straight home too. We met there, grabbed our stuff and off to St. Joe’s hospital we went. We got there at 1:30pm. The on call doctor checked me and said I was dilated to 7. Ok, I knew those contractions were hurting. Our friend, Jen also came to the hospital. She was there when Addy was born and it seemed fitting to have her there this time too. Plus, my husband appreciated some support. ;) The nurse kept having glitches getting me logged into the system. It didn’t take long for me to request an epidural. The pain was starting to get out of control. In a blink of an eye, I went from 7 to 9/10. The nurse finally ordered my epidural. I am not exaggerating when I say I wanted someone to cut my head off before the epidural kicked in. I cannot explain the pain that comes when going through child birth. It is something out of this world, that’s all I can say. Later, I would find out that Jen and Scott both thought I wouldn’t have time for the epidural as things were progressing too fast. Thank goodness they were wrong! The anesthesiologist comes and Scott tells him he has one chance to get this right. See, with Adeline, my first epidural didn’t take. This time, there really wasn’t enough time for a do over. It worked! Thank you Jesus! I immediately had to start pushing – only a few pushes. And our Graham made his arrival at 3:20pm.
There he was...Graham Thomas Snodgrass. They grabbed him right away because there was meconium in the water. They suctioned everything out of him immediately. I missed out on that first touch after the baby is born...like I had with Adeline. It made me sad, but it was all for the better of his health and I understood. I remember seeing him, I focused on his eyes from afar and thought to myself, I think he has it, but didn't say anything. I kept a smile on my face, I think? I wanted to anyway. I was happy to finally have him here, but the unknown is waiting. I asked Scott if he could tell and he said he didn't know. Scott asked the doctor and he said he couldn't tell 100%, that Graham was swollen and it was too early to tell, but he believed there were markers. There were markers? What exactly does that mean? Can someone just confirm something for us? We have waited 9 months after all. We spent the day holding and loving on our little man. He was seen by 3 different pediatricians during our short hospital stay and while all of them said they noticed markers, no one would give us confirmation. They said we had to get a blood test. It was frustrating - I just wanted to know. I wanted the doctor to just say it. Someone, just say it. Hadn't I waited long enough? God was saying wait, yet again. Seriously?
The blood work from the hospital was botched up and we had to redo it the following week. We did. I recall sitting in our living room floor, playing with Graham, looking over to see one of my new born pictures. It was amazing how much Graham looked like me in that picture. Scott and I started to have a little doubt, maybe Graham really didn’t have DS. Maybe all of this was something we were going to be able to put behind us and move forward. Maybe this was just a dream and we were on the verge of finally waking up. Then, two days prior to Graham's 2 week birthday - I called the nurse to ask her how much Tylenol I could give Graham for his circumcision (we opted not to get it done in the hospital so my OB could do it & to avoid the Vitamin K shot), she told me the amount and then said, 'by the way, the blood work came back positive for downs, Dr. Agolia will be calling you later.' Instantly I felt like I was in slow motion, I tried to say ok, thank you - something to just get off the phone, but it didn't come out well as my voice was shaking and I began to cry. I woke up from my dream all right, but directly opened my eyes to a very deep fog.
I got off the phone and instantly called Scott to give him the news. One would think after all these months, I would have been more prepared - I knew the odds were great, but it didn't matter. No one, no thing can prepare you to hear devastating news about your child. Devastating as in not typical, as in a much harder road to be on, as in I only want the best for my child and you are telling me life is going to be more difficult for him for the rest of his life. I spent the day alone with Graham and shed many tears - tears alone, tears while holding him, tears, tears, tears. And later that afternoon, Scott and I took him to be circumcised. And I cried some more, and so did Scott and so did our little baby. His tears were for different reasons, but all the tears were tears of pain. A pain deep down inside; a pain I kept hoping in the back of my mind I would never really have to face. The next couple days were a blur as I didn't talk to or see anyone - I didn't want to. I needed time alone. Since then, I (we) have been trying to process everything. Some times day by day and other times, moment by moment. Looking back at the encounter with Troy, I can see the significance now. What we are going thru is very similar to a grieving process. Grieving the loss of what you thought you had, and knowing that it will forever be changed. I know I will not always be sad, but I have many sad moments. Like right now, writing this. And then I have moments of being angry with myself for being sad. That Graham was made this way for a reason, why should I be sad? That is so mean of me and not fair to be sad for Graham, but my heart aches for my son and for all the challenges he will face. I still try very hard not to think of the what ifs, although they creep inside my mind from time to time....will Graham have to live with us for the rest of his life? Will he ever experience the simple pleasures in life like playing in a sport? Will he.... It can consume me and start to break my spirit. I try to be thankful for some good news as he appears to be in good health thus far and that is a huge praise for a child with Down syndrome. I can see God changing my heart and eyes already. Those couple of weeks after Graham was born, the waiting for confirmation - God showed me that Graham is just 'Graham' with or without a diagnosis. And, that is very true - I look at him and see a beautiful, sweet, innocent little baby boy. My baby boy, our baby boy. I see our daughter show that same unconditional and immediate love for her brother that we share as parents for our children. It is amazing. So innocent, so pure. Adeline does not see Graham and think anything other than ‘this is my brother’ and for that reason only, she’s in love. Yes, Jesus knew what he was talking about when he said we must have child-like faith.
Months have now passed & we are quickly approaching celebrating Graham’s 1st birthday! We have been to many doctor appointments, therapy is in full force, yet we are daily in awe of our little guy. We have even started going to a local support group for parents with Down syndrome. All of this has been eye opening as well as overwhelming. There are still tears some days, but not as many as before. There are also a lot of smiles and now smiles we get to see in return from our sweet boy. Graham is getting stronger all the time and although he may have a longer road to get ‘there’ than most others, it just makes the journey and the accomplishments all the merrier. Scott and I cannot imagine life without this amazing boy in our lives...just the way he is…just the way God created him to be (wonderfully and fearfully made). Our prayer is for God to continue to equip us as parents for both our children – as each child has their own needs. I have no doubt that Graham was sent here for a reason and now that I have been able to let the fog clear a bit, it becomes more apparent every day. We are OK. Actually, we are better than OK. We are blessed…
No comments:
Post a Comment