I have to say goodbye to a friend today. I’m struggling as most people do with death. In this case we are talking about a mother leaving her young son and loving husband behind ,so the sting seems slightly stronger. We are talking about a woman who fought tirelessly in the face of cancer. We are talking of a lady so open and honest in her journey that it was tough to read sometimes…and we are talking about a scenario where holding onto your faith is like keeping your umbrella upright in a windy rainstorm. I don’t understand but my guesses are plentiful. She was too good for this place? God needed her more than we did? She came to teach us something?
I met Jodie only once before she became sick. She showed up at a mutual friend’s harvest party with a sparkling newborn and a matching smile. You could tell that boasting about her beautiful bundle was exactly where she wanted to be. Pride floated around that party like bopping balloons and we were all in celebration mode. I recently had my first little boy too so the connection was there and our small talk centered around our babies.
The next time I met her was Christmas night at the same mutual friend’s house. It was a casual affair and I immediately accepted the invitation because I heard karaoke would be involved. When I arrived I saw Jodie and also found out we would be singing tunes on her brand new karaoke Christmas present . She may have loved karaoke more than I did. She refreshed my memory about how we met and then launched in to how she had just found out that she was sick. I was a bit awe struck of how easily she shared with me. We barely knew each other and yet at the same time I totally got it. There are two kinds of people out there. There are those who are very private, choosing only to bring in their very dearest into their world and to bring them in slowly. Then there are people like Jodie. People who approach you and boldly say, “I have cancer. It’s stage 4.” I remember my reaction when she said “stage 4 ” and I remember it not being a good one. I may have even possibly gasped. I didn’t know a ton about cancer but I knew stage 4 was not the stage to be in. I still regret that reaction… but you know what? I honestly think Jodie was okay with it. I am a sharer like her, hence this blog that bears into my soul. I do it because I want the gang to rally around me, because secrets eat me alive, because if I’m inwardly freaking out I want you gasping right along with me.
Jodie and I sang our little hearts out that night and all the while I was impressively stunned about a girl who just shared “stage 4” and was still belting out show tunes.
After that night I decided I had to follow her brave crusade. I read her posts on Facebook and eventually her late night soul stirring blog posts. Never in my life have I ever even considered donating blood until Jodie asked us all to do it. She said that it really could help people like her. Both Bobby and I went that week. Bobby still goes and we will probably donate blood in her honor for the rest of our lives. We got to really know her family. We went to the best summer Christmas party for Sammy; complete with snow and Santa. Our kids went to school together and just last year Jodie was dressed to the nines to surprise her son at the Halloween parade. Her spirit was palpable . You could touch it. You wanted to be it. And I found myself asking a million times “how the hell is she doing all this?” It’s the one thing I wish I asked her. The why was evident. She wanted to make memories for her son and she wanted to be in them…but the how? How do you climb out of that dark to be such a force of light? What in the world did she know?
The last few weeks weighed on those who rooted for her and saw her WINNING! There were setbacks. When her Facebook posts became sparse I worried. When her sister started posting for her I started praying…hard! I spoke a lot with God. We chatted about how I knew it was impossible to ask Him to take away cancer. I reasoned with Him. I said if everyone got their wish of no more cancer then our planet may not survive. I told Him that I got it and and how I understood. I even mentioned that maybe He was unable to take cancer away and that was okay too. Justification. I said what I needed to say to make sense of a tragedy. I also added that if Jodie DID make a miracle recovery I could totally believe in that. For her, a miracle actually seemed possible.Some people just leave an impression that is miracle worthy.
As I entered the hospital on Thursday after my water broke, I scrolled Facebook to pass the time. I saw the first profile picture changed to one of Jodie, then a second and then I knew. She was gone. It took me a bit to confirm what I knew …but she did indeed lose her war. Bobby and I sat there about to bring new life into this world and we grieved. We grieved for her husband and her young son and for the miracle we all wanted so badly. I started with my “why’s.” Why did we get to be sitting here having a baby and she lost her life? It felt so unfair, It felt so guilty. It seemed way too much “circle of life ” for me in that moment. But I also felt thankful. I felt thankful I knew her, thankful she would be watching over me in that delivery room, thankful she was being glorified all over the place. She made her life matter. Here I was at the pinnacle of an important moment in my life and she was there….just as she would be scattered throughout little Sammy’s memories and dispersed among stories from loved ones. And while God may not always be clear about why tragedies happen, He is always clear in the lesson…we walk away more somber, more broken, but more grateful for what we have, more aware of greatness when we see it and with more understanding of how life should be lived. Thank you for the example Jodie. You will be sorely missed.
It is still all so deliriously raw. They walked in and repeated again what they had been asking since 2am “are you ready to push?” With heavy eyelids and longing to escape reality, I emphatically shook my head; no! Then The time came when pushing was my only option and so tears poured. As they streamed in sync with self awareness, I uttered ” I’m scared.” Now, this statement on its own is by no means a revelation. Birthing a baby, even if it happens to be your third, is a frightening time. My leeriness exceeded even my own expectations though. I suddenly discovered that I was never going to be ready to welcome this wonder into the world. I knew too much. My forty plus years and almost two in the world of special needs had spooked me and they spooked me good. I had now been privy to moms not making it to the part where they whispered ” Happy birthday” to the pink person they created. I’d bared witness to too many littles who became angels with the teeniest of wings. I now knew of hundreds of disabilities that never even existed to me before Judah. I was no longer the naive 38 year old mom that I had been just four years earlier . 38. A number considered geriatric by an OB’s standards…but to me it was an age when I knew nothing except where babies came from and how they were born. My biggest fear back then was just exactly how much my lifestyle might change. Now, as contemplated pushing, I envisioned everything from me dying to a life completely altered by the overshadowing need that came from special needs. For the last nine months I said it was in God’s hands and I meant it. I prayed, oh how I prayed…. and I prepared. At least I thought I prepared. But in that moment, where I was reacquainted with how life altering one moment could be, I did not want that one moment….not yet anyway.
August James Craver came into this world just like he came into our lives nine months earlier….with ease. I’ve said before that he willed himself into this world and that is still our truth. We would have never picked to have another baby. Risks and calculations and trauma all contributed to that certainty. Unbelievably , when I witnessed that little plus sign pop up in our church bathroom stall, my heart raced and I shook like a leaf. What was I going to do?
Well, I was going to have a baby that’s what I was going to do. There were no options, no redo’s, no choices. So, slowly acceptance grew along with my little nugget. I had to handle this pregnancy with great care to emotionally withstand it. Physically I was struggling, emotionally I was worse. I have written before about how we used resources to give our baby the best shot at life, then we held on to faith and let go…..I never truly let go.
Augie was a good little baby inside my growing belly. He gave me heartburn and he gave others the permission to call me huge or ask if I was having twins. But he was perfection. He measured right on, moved the right amount of times, passed his diabetes tests, got active for non stress tests, smiled for sonograms. You could say he did it all on cue. He was what to expect when you were expecting. Also, I’m in pretty good tune with my body so I felt deep down like he was healthy. I also felt that he was a boy, but I waivered. He seemed boy but I was so moody, unsocial, agitated. I was a pretty good shell-hiding hermit this go around and I just kind of wanted to be left alone. Many wished Augie was a girl for me and I thought that he just might be. I’d never cried so much. I never flip flopped between elation and emotional distress so often…and I never even thought that perhaps my subconscious was reeking havoc on my consciousness.
Keeping in time with what pregnancies are supposed to do, my water broke on its own. That never happened with my other two. It broke in school, in a meeting, 2 days before I was to be induced. Good little Augie. I also had a natural progressing labor. Another first. No Pitocin, just good old fashioned hurt like a bitch labor. It was pretty amazing and after 3 maybe 4 terrifying pushes I held my baby boy!!
Here’s what immediately followed. I cried so hard my stomach hurt. Relief washed over me tsunami style and I became me again. I was happy. I was joking and I was smiling. Reality set in that this was my baby. Different babies riddled with illness, disabilities and lifelessness drifted away and I sailed back to the me I knew so well.Hours later, as I pranced proudly around the hospital with Augie in his clear crib and a permanent grin on my face, so many thoughts came tumbling in. Like how I’d pretty much avoided all social contact for the last nine months. Like how I was petrified of other trisomies, of Zika , of the uncertainty that couples pregnancy. Like how I tossed between lashing at my husband or crying on his shoulder. Like how little sleep I got, how I had no patience, how I gripped my little ones in the weeks before for dear life and how this hospital reminded me of an incredible sadness almost 2 years earlier. I thought about how on this day I said good morning to all the nurses and chatted…how we were called “one of the nicest couples they had ever met.” Then I reminisced about just two years prior on the very same floor. I could barely open my eyes they were so stung from crying. I could think of nothing but Down syndrome and it ate me alive and spit me out. I hid my baby then. I never left my room. I never left the bed. I was devastated and I surely thought I may die from a broken heart. My delivery of Judah was more painful than words can even do justice to. My pregnancy with August, more stressful than I could ever realize until it was all over and we were safe. I cannot begin to explain how it feels to have nine months of inner turmoil between acceptance no matter what and a fear so grand it scares you to even whisper it into the universe. I can’t describe what it means to literally pull that fear right out of your body and realize that everything is ok; that I woke up from a million nightmares I created to the face of an angel. I cannot convey the relief to never have to be pregnant again and carry all of that worry in my womb.
Do not be sad I never got the elusive girl. I’m not even sure I ever wanted one? I wanted one for the people who wanted me to have one. I wanted one for Calvin who wanted a sister and for Bobby who has a soul built for both sons and daughters, but for me? It’s not what mattered. I still am crying daily tears of gratitude that fear has left the building, that I am actually allowed to be happy. I haven’t stopped smiling about how fun my life just got and how this is exactly where I was meant to be. I am in awe still of how new life is absolutely amazing and I am just soaking it all in from fingers to toes.
With Calvin, I was too busy trying to not let my new baby change anything and with Judah I was too busy reveling in the wonderful way his birth had changed everything.
August has his namesake because we loved Augie . It is also in honor of August 15th…not because it’s my birthday. It is the Immaculate Conception of Mary and it is the birthday of St. Anthony. These two religious figures played dramatic roles in my pregnancies and They have protected our family fiercely. The amazing way They have shown themselves can only be described as divinity and so it only felt right to pay homage. . Like Calvin and Judah, August has come to show us something too. He has taught me how memories that haunt me do not define me. He has shown me that I do not have to fear life just because it banged me up a bit. He taught me how I deserve to be happy; how I deserve a great life. He led me to let go of what hurt me and enjoy the good.
Quick recap. I have been posting a little nugget everyday in October about Down syndrome. It is Ds awareness month and so I’m stepping into my advocating boots and splashing knowledge around just like other fellow mamas of these littls. I’ve had to wake up quite early to face this feat and as I woke up one Friday I knew I wanted to speak of the way people with Down syndrome view themselves. What I didn’t know, was that there was a knot in my belly eating away at me. I was desperately embarrassed to share but good bad or ugly, I realized that I have to be all in on this journey. So, bleary eyed, sleepy and with a worry I was saying too much… I decided to reveal my deal. I told of a kindergartner in my class who called my baby Judah ugly. It was a gut punch and I was sad. I was stunned and I was unequivocally angry. I put that all out there on social media and the response was astonishing. The thoughtful words came down in a heavy pour and advice bolted brilliantly through. I decided to pick bits of pieces of all the wisdom sent my way and what follows is how I handled my torment….
Friday morning, I had every intention of being angry at my pint sized name caller. After all, she was careless with my feelings and embodied a fear I will be forced to face throughout my entire life. I had no intent of trying to get into it and instead, I prayed time would help the fury fade….but as I read countless comments on social media urging me to turn this into a lesson, I decided that even small children could benefit from the voice that I am on my blog. I wasn’t sure quite how I would approach the messiness of my feelings but I knew it had to be better than being bitter.
I’d like to start by saying that this little girl is a good kid. She is a smart cookie and downright adorable to be honest. She is helpful and loves to assist me. She also turned fragile when someone told me what she said about Judah. Frankly, I was stunned and I said nothing in reply. I brushed away lightly what was weighing so heavily on me inside.
Friday morning I called my kiddos to the carpet for morning meeting as I always do. We greeted each other with a handshake. I made sure we all used a right-handed, firm handshake. I ensured that everyone was greeted with eye contact, a smile and that we used each other’s names. This is always my expectation. I trust that the manner river runs deep in my room; sometimes deeper than academics. The little girl in question was called to leave. A teacher came to take her to give her some challenging one on one time because she literally is the smartest child in my class. I asked that she remain because I had a very important lesson to share. This is when I launched into my classroom rules; specifically number 6…a caring heart. We had a discussion about what it meant to have a caring heart and the most popular response was that it entailed being nice or kind. I then asked the class what they would want in a friend; what kind of things they would like their friend to be like. A little boy up front chose love! I wasn’t expecting that but my heart leapt the sound of it. Yes!!! I responded a bit to eagerly. You want your friend to love everything thing about you no matter what. I asked for another answer and saw my little darling raise her hand. Natural curiosity led me to choose her. Her reply was gold. Innocent as could be she said “Cute. I want my friend to be cute.” It’s like opportunity strapped on its cape and flew right into the center of my morning circle.Instead of responding I turned the question to the class “does a person have to be cute to be a good friend?” A pretty resounding “no” returned from the crowd. . Most of them knew that cute did not need to be acquainted with friendship. I quickly moved on as not to embarrass my little offender. But inwardly it hit me. Someone was telling this sweet girl with braided pigtails that being pretty ( being cute) is what mattered. Judgement didn’t fly , embarrassment did .I recognized how many times I focused on cute in my early days. I was drawn to the cute puppies, the pretty dress, the beautiful looking friends. Anger quickly dissolved in that circle and understanding washed over me.
Next I took advice of an friend on Instagram and played the YouTube video of the book “Have You Filled A Bucket Today”” I’d read the story before and knew it’s message was one of humanity, but I had forgotten the delicious premise. As the story unfolded itself in front of me again, I knew this was where I wanted to head. I didn’t want to hone in on what not to do but rather what is good and true in this big bad world of ours. The premise of the story is that when you say nice things to people you fill up their imaginary bucket making them feel good inside. However, if you say mean things then you are emptying their bucket making them feel bad. When you do this, you are also emptying your own bucket making you feel bad. I love the point that the author makes about how people think emptying others’ buckets will fill their own. Ahhh, what a way to bridge the adult concept that people are sometimes mean to make themselves feel better.. On the contrary, the author states, when you fill others buckets you actually fill your own. Brilliant!!! The story is an impressionable little anecdote for the wee ones and delivered the other part of my message across quite nicely.
Be kind, speak gently, live with tolerance and don’t judge others on how they look.
Now came the hard part.So far these were just character lessons that should be taught anyway. But now I had to bring up Judah and to put him in any other place than the pedestal I place him on, is a tough place for me to go.
I said, “now maybe some of you noticed that my baby Judah looks a little bit different and that is because he has Down syndrome. That is why he isn’t walking or talking quite yet; but he will. He is the same as all of you but it just takes him a little longer to do things. I don’t want you to miss out on Judah though because Judah is a great friend. He loves s no matter what and is always kind to people. Also, it makes him sad and me ,his mommy, sad when people take from his bucket; if they are uncaring with his heart. He feels it and so do I.”….. I was strong people. My voice didn’t quiver and my eyes didn’t brim. I was all so easy to say and I felt I was easy to talk to. The kids had questions and most inquired about when he would talk or walk, how old he was, what toys he liked….
I did my job. Did any little 5 year old walk away that day thinking “wow I should really be less judgmental and keep my thoughts to myself if they aren’t nice?” Probably not. But here’s what did go down. These kids got to know my son. Fear was replaced with curiosity, and a face they may have never seen before was replaced with familiarity. Now days, my students STILL ask about him all the time. When they see a picture of him they say “there’s Judah” like he is a buddy. That’s all I can ask for. All I can ask is that Judah is not seen as a statistic or percentage or disability, but as a someone. The kids got that!
On a side note: I later explained to another teacher in the room with me why I taught that whole little lesson. She did not hear what I heard the day before. She said to me, ” oh I didn’t hear that. I did hear a kid say twice how beautiful Judah’s eyes were.” At that point, I suddenly remembered it too. This boy did not say that Judah’s eyes were almond shaped, had brush-field spots or that one turned in a little bit. He said that they were beautiful blue eyes. In that moment I learned a lesson too. I learned how I need to give equal weight to all the things I will hear about Judah . I cannot walk around life focusing on the fear that someone may not be instantly in love with him. If I do that I’m doing myself a disservice. I’m missing out on all the rule number #6’s, the caring hearts, that swirl around Judah every single day.