I just returned from a little vacation and I stopped and visited two of my sweetest best friends on the way to my vacation destination. When I visited each of them, Kristine and Katie, one of the first topics of conversations was Maddox. Let me explain a little...we are the type of friends who don't have to speak everyday, but when we are together we are as comfortable as people can be and pick up on whatever is going on in our lives. Kristine has a 4 year old little girl and is pregnant with her next little girl and Katie has a 2 year old little boy and just had a baby girl. I went to SEE them and CATCH up on them and their kiddos.
I stayed one night with each friend, Kristine being first, for Maddox to be an early topic of conversation with each FRIEND meant the WORLD to me! Although they both knew bits and pieces, we basically started at the beginning each time and paused when they had questions. It always led up to if he had any movement in his legs. I said no, he doesn't he is paralyzed from the waist down. I probably said it rather bluntly. Using the word paralyzed is new for me. I had seen it being used more frequently in Kelly's posts on Facebook and maybe in the email she sent me and the doctors use it. After I said the word paralyzed so bluntly and got "THE LOOK" from each FRIEND, "the look" is a combination of sorrow, pain, shock, many things, general not knowing what to say or do next...I explained that previously I'd always said that at this point he hadn't had any movement from the waist down so far. When I heard/read the word paralyzed, I had a good, hard meltdown...the WORD hit me hard in my heart, it physically hurt my heart, the word paralyzed sounds so permanent and confining. I have no problem with the fact that my nephew will probably be in a wheelchair, but I still hold out hope that he will not need it all the time and will not be confined to it, we all still hold out hope that he will walk one day with any aids he needs...we will NEVER let go of HOPE, so the word paralyzed, kind of like the word disability wasn't a word I'd been using YET or ready to face. Once I accepted the word (I think), I started using the word more freely and probably giving other people a very tiny percentage of the feeling and shock I felt when I had my meltdown, I'd say less than a 5% reaction to what I had. I took it hard.
What NO ONE understands and why I think any of this is a big deal anyway is how this wasn't found before Maddox was delivered. The Spina Bifida itself isn't a big deal to any of us, I guess it was the SURPRISE and we are still processing and learning about it, I suppose. Kristine was explaining her prenatal care as she had some high risk issues with both pregnancies, I was fortunate enough to be there for an ultrasound during her first pregnancy with Zoey! The things she was explaining either didn't exist when I was pregnant OVER ten years ago, weren't available where I was, or weren't routine in normal pregnancies. I know it's been a while, but I will always claim to be knowledgeable when it comes to pregnancy and babies and my friend was using terms I had never heard of as far as what she made it sound like was normal prenatal care. Hmmm. Well, the next day, I'd be speaking with a recent preggo who only lived about 30 miles away so if it came up, I could compare notes on what is and isn't normal prenatal care, I suppose.
When I got to Katie's and the topic of babies in general came up...her recent delivery, how Kristine is doing, how my Maddox is doing, I learned that for a lack of a better way to put it, that after Maddox was born since Katie was already far along in her pregnancy, she started to do interrogation sessions at her prenatal appoinments as to how Spina Bifida could've gone undetected. I laughed a little knowing Katie and picturing this, then I took it to heart that Katie who'd never met them did something that meant a lot to me. The overall gist that I got was that the South tends to have more high tech prenatal equipment than the North, which surprised me, but I believed it because of the equipment I'd seen at work at Kristine's appointments. Maddox being at Yale up North was one thing, but as far as prenatal care, my friends weren't going to any SPECIAL care, this was just the care they received. Detailed anatomy of the baby down to knowing how many veins and arteries there are in the umbilical cord?!?! That seemed CRAZY to me, but again, it'd been over TEN years for ME!
So, I am at a place of not understanding how you can see something that sounds as small as veins and arteries, but not something as big as a hole in a baby's back? I'm glad for my babies that I love not born yet that technology develops all the time and hopefully anything that needs detected can and will be, I will never understand how Maddox's Spina Bifida wasn't detected. Although detecting it wouldn't have changed things, I just won't understand. Actually, "the look" I get when people hear his story and realize this went undetected is VERY similar to "the look" I'm getting when I bluntly say that he is paralyzed from the waist down. Although, I go through a range of emotions and feelings in the journey I've been on since that beautiful boy was born, one emotion and feeling that has never changed is my unconditional love for him, maybe it changes because I think it grows with him! I still cry on occasion when I get deep into the story or thought or there's a new term, but I'm never sure why. I refuse to feel bad for Maddox. He has a great life with great parents and I don't ever want him to be someone people feel bad for, so I'm not sure why I cry, but sometimes I still do. Maybe out of my deep love and concern for him and his future and my desire to always be a caretaker and protector of those that I love.
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