A midwife stopped me in the hall at my last check-up a couple of months ago. "I've been thinking about your son and I came upon this research about Antiphospholipid Syndrome." "Do what, now?" I thought. "It's a coagulated blood condition in mothers that can effect the baby, and cause birth defects, because the blood is too 'sticky' to give the baby the nutrients and oxygen it needs in-utero." I thought back to my umbilical cord. It was short and skinny when I delivered Grey, and I have been diagnosed with coagulated blood. "Hmm, I really need to look into that, thank you." I said a bit shocked.
A few days ago I saw my neurologist. I guess I should mention at this point that undiagnosed diseases run in the family. I have been searching for an answer to my extreme fatigue and dizzy spells for 15 years now. Most of my doctors have given up, and I am now taking a medication that they give soldiers and doctors that need to stay up for days at a time. I take this medication everyday just to stay awake, and I fall asleep just fine every night. It was a routine check-up, that I thought would be quick and painless. The doctor asked "How are your symptoms now?" I replied "They are OK, I guess. I had one of my dizzy spells last week and felt pain behind my eye with it." "Explain those dizzy spells to me again." She said. I had explained them to her so many times before that I rattled off the usual speech. "It starts at the top of my head, tingly, I can't move or talk, but I am concious...blah, blah, blah." "That is a classic description of Complex Partial Seizures." Ummm...WHAT?" I responded. "Yes" she said, "that is what you have. Seizures." I was, again, stunned. (I seem to be stunned a lot these days. I guess this type of situation is just... stunning.) "We need to get you on some medication because every time you have a seizure it is like a fire in your brain, killing brain cells." "That explains a lot." I thought. She scheduled more tests, as I sat thinking. I remembered what the midwife has said and asked, "Do you think I have Antiphospholipid Syndrome?" She said, "Let me read your chart again." She scrolled down the plethora of blood tests and her eyes lit up for a moment "Yes, I believe you do." At this point I choked back the tears and asked "So, do you think my condition has anything to do with Greyson's condition?" She hesitated for a moment and said "No, probably not. You'll have to ask his doctor." His doctor? His doctor is a neurologist. I felt like she knew it did effect him, but didn't want to tell me, or didn't feel it was her place. I finished up as quickly as possible, and left.
I drove home in tears. When I walked in the door Joe asked what was wrong. I told him the whole story. I retold the frustration of trying to get a diagnosis for myself before I got pregnant with Grey, so that the baby would not be effected by my condition, whatever it was. I was so angry that I had a diagnosis before I got pregnant, that was somehow overlooked. I wasn't warned, or prepared. He told me "Greyson is who he is, no matter if it came from you or not. We know he is special. We've known that all along. He might not be with us for very long, but that is not your fault. This is Heavenly Father's plan for him, and us." I knew he was right, and I agreed, silently. The pain and frustration didn't leave right away. I tried to keep my mind off of it. We watched an episode of "Grey's Anatomy", BIG MISTAKE. In the episode a 10 year old boy dies after beating the odds for years, and a baby is born with severe complications. BLAH. I cried and cried. I picked up Grey and held him tight. He patted my arm as if to say "It's OK, Mommy." Which of course made me cry more. I wish this story had a happy ending. As the days go by the pain becomes less, and I am truly happy for the time I have to spend with him. I am also grateful for wonderful friends and family, that support and love me.
Next time I'll be funny and happy, I promise.
no, it's not a happy ending, but more "bittersweet". it led us to another confirmation of how lucky we are to have his special spirit in our family and that everything will be ok - although it does suck a$$ - sorry, it was getting too sappy... had to spice it up ...
ReplyDeleteYou're blogs won't always be happy though will they? Life isn't all jokes and giggles for anyone. We all have our trials be them big or small.
ReplyDeleteI think if I were in your shoes I would at least be glad that I had a this might be "the reason" other than not knowing at all. Does that make sense?
I think you and Joe are incredible and have such great attitudes. You guys are such an example for everyone.
And I do like his comment about it sucking a$$ :)
I agree with Joe in that we don't all have the same purpose in life and although sometimes you may think that Grey is deprived of some normalcy, he actually isn't. This is the 'normal' that he needs to carry out whatever purpose he may have in life. Although it may be helpful to find the cause of his health issues, you have to draw a line where the blame game begins. These are matters that were beyond your control and even if some weird genetics or your own health issues caused Grey some problems, it certainly isn't your fault. I think you know that, but I wanted to reinforce that point.
ReplyDeleteThat is concerning but you guys are still just surviving and that surviving is inspiring to us readers!!
ReplyDeletep.s. The word they want me to type for security is 'demons'...I am now laughing out loud. Demons it is!
demons - HA HA HA! My word earlier was "tailpipe saga"
ReplyDeleteFirst let's get to the important matter at hand. You look super pretty in that picture!(Okay, maybe not the most important matter, but it needed to be said all the same.)
ReplyDeleteThis whole thing makes me super pissed at the doctors. But diagnosis or not, treatment or not, Grey is Grey. You know this. But I agree it bites extremely hard that it had to originate from you.(Most likely)
No more crying over this part. Moving forward! Onward and upward! We can do it! Love you!
Fornone! (My security word)
Charlotte, Blessing and bummer. I actually have 'undiagnosed' anticardiolipid syndrome - which I think is the same thing. They think that's the cause of all my miscarriages, and so I take a baby asprin throughout my pregnancys. It's all a very imprecise science, and almost undiagnosable because your numbers can change so often. I felt guilty about the miscarriages, but the truest thing any doctor ever told me was, "There's only 3 things you have to remember. It's not your fault. It's not your fault. and It's not your fault." You did your best to get answers before the pregnancy; the doctors did their reasonable best to get answers. Some things are just truly beyond our control. God knew what was happening and what would happen AND he loves you. So it's OK. (Easy for me to say.) This diagnosis may only have come because of the combined symptoms and you and Greyson... and may someday save your life. Someday you can ask God to show you what your 'alternate universe' would have been like had you known, and maybe it wouldn't be any better. But eternity will be. Here's hoping and praying you can make it through the individual days and still experience joy!
ReplyDeleteHere's the thing you have to realize, grill--if you HAD known, you probably wouldn't have gotten preg. And THEN what? Then you wouldn't have had Grey. And you know you were supposed to have him. So, all is going according to plan ... but I know that it still sucks. Just know you did the best and right thing--you got your baby down here with you! You are so amazing, you suffer so much and yet remain strong. I love you, grill! Ickstle.
ReplyDeleteI filled out a genetics study for the state about Elle and the whole time I kept thinking "This is crap!" It was all about what I ate or didn't eat or did and didn't do. There will always be questions but the answer will always be that you have him as he is and he was meant for you because you can and will do the very best for him.
ReplyDeleteOh, my friend, I'm not sure what to say. I find the "if only" and "what-ifs" in life lead me down a dark murky road where I tend to lose faith rather than grasp for it...at least at this point in my life. I've yet to reconcile the whole "meant to be" thing in my heart and mind. With Nathan, I feel like a "normal" little baby was injured by a mistake and he'll always have to wrestle with the consequences. He wasn't chosen to be "special", he had it thrust up him--in my mind, hopefully not by God. Please not by God. I'm not sure I could trust Him if that were the case. Blah. I'm bawling now. As you can see, I have a lot of issues to work out. I have much to learn from you and Joe.
ReplyDeleteAnd by the way, that is truly a lovely picture of you.
Thank you to all my lovely peeps. And I think that I should make the security word a must when leaving a comment here. I got some good chuckles out of that!
ReplyDeleteOh, Cha, this is all so sad and I am in tears once again. You are amazing and wonderful and I am once again so glad that you married my brother. You two are so good for each other. I am so so sorry that you are going through all of this. It is so sad that you didn't get diagnosed before Grey, but like others have said, then maybe you wouldn't have him now. Have faith, Cha, and know that we love you.
ReplyDelete