First, can I just say that isn't this girl the cutest?
I could look at her all day.
Here we are with things - at least the diagnoses: 1. Down syndrome - no biggie. 2. Infantile Spasms - sucky. But the good news is that there hasn't been any more seizures and her med is supposed to help prevent them now. 3. Stereotypic Movement Disorder - the jury is out on how I feel about this one, but it is very stressful to see these when you fear seizures all the time. 4. Now the neuro wants an eval by a neuropsychologist. Why you ask? Well I don't know - I wasn't at the appointment and did not have the opportunity to ask, but I have my suspicions of what he may be thinking is there PDD (Pervasive Developmental Disorder). I am basing this on the questions he asked Neal. I just don't know about whether that is something with her though. The last few days she has been so interactive. The more I watch her, the less I am convinced.
But today all of the above doesn't matter because just consider how cute cute cute my girl is. She is the best daughter a mom could have and I am blessed. Oh the power of mighty Quinn.
I was in a meeting yesterday. I am realizing that these meetings are tense for me because usually something like this happens... The topic of the meeting turned to our kids and that our kids "need" to grow up and go out on their own versus us perpetually taking care of them (one person has kids who are young adults and pretty dependant on their parents). Discussion insinuated that this is the way of life and the only way things go. I was just struck with how many assumptions are out there - thinking that this will happen for 100% of the people in the room. I don't know what the future holds. Hopefully Quinn can be independent. But maybe not. Let's be realistic, Quinn is even behind her peers with Down syndrome. She has epilepsy which is impacting her development. How can I assume anything? I need to wait and see. But at the meeting I realize that I don't fit in with the supposed "cool kids." The cool kids who think they have it all figured out. I am an outsider who has a different experience. An experience that they really don't want to hear because it scares them. It challenges their assumptions and that is just not a place they want to go. Disability is diversity and when you really start looking around you see that you can feel different in a lot of places - assumptions are everywhere. However, in this case I actually would rather not be part of the cool kids club. If I was, I would have never have gained this new perspective and I would be blind to a whole segment of life.
Last night I was listening to my Black Eyed Peas CD. I know they have some songs with the r-word in it (arrgghh), but what I was enjoying last night was One Tribe. I love that song. It makes me smile and boy did I need to smile. My favorite line in there is about catching amnesia and forgetting about the evil. I decided that is what I need to do when it comes to the current state of things in seizure land. I need to catch amnesia and see this...
And not the evil of seizures.
My daughter is the most beautiful little girl in the world. She is so worth whatever we have to go through to have her. And her face when she smiles is the thing that mends my heart.
I am so tired. Emotionally tired. In a short amount of time, it will be the anniversary of the day that I received the prenatal diagnosis of Down syndrome. If I had known then what I know now, I wouldn't have had that hard of a time with that diagnosis. Here I wasted all those tears on what - something I long for now. Something I just want to have, the Down syndrome experience without any other major issues. I thought it was the end of the world, but it so wasn't. For those of you who have a prenatal or recent diagnosis of Down syndrome, please don't read our story and have fear. Down syndrome didn't do this to us. Down syndrome was the blessing. It opened up our world to a new sensitivity and understanding of others. Sure, it isn't always reciprocal - others don't always have that sensitivity or understanding - but then at least you find out about the character of others. Down syndrome is not what I hate now. Down syndrome is beautiful to me now. And so many people have just the Down syndrome experience. I guess it just wasn't in our cards.
What gets me is epilepsy, of course. Surprised - huh? Not. I don't want to learn about different types of seizures or medication. I don't want to be asked questions over and over again about these topics. It is like being given another final exam after the semester has ended and all you want to do is live it up for the Summer. No, not live it up for the Summer, but at least get some respite, some calm - take a nap at least. And most of all, not have to complete another final exam because you are totally drained. But instead you get another final exam put in front of you on your desk and people just want to know this and that answer. They are screaming at me, "Come on, Karyn, finish up the exam!" Ok they are not literally screaming, but this is my analogy and it sure feels this way. So maybe you comply and although you are tired you get that one additional final exam done. You take a breath and look away for a spilt second only to find that another one has been slapped down on your desk. I get it that people just want to know and be helpful, but these conversations are so draining for me right now. I have decided that for my sanity I have to become a D student and not answer every question. Underachievement is now my friend because I don't have the energy or knowledge right now. This is hard for an A student to admit (I went through my college - undergraduate and graduate with a 4.0). I will do this for me - it doesn't mean that I don't appreciate others' attempts to be helpful. I just need to think about myself right now in some ways. Self-care. So to do this, I might answer questions if I feel like I can or walk away from the desk and take a breather for a while.
Want to feel helpless? Who would? Well, guess what, I do.
The premiere helpless experience thus far - watching your daughter seizure over and over again on and off during a 15-20 minute period of time. Calling her name even though you KNOW this isn't going to do a dang thing, but you desperately want to connect so much that you do this stupidly anyway. Your heart proceeds to break into two. You feel as if these pieces have fallen onto the floor and are at your feet.
This happened to me last night.
Yes, now we know she has developed another type of seizure. Unfortunately I don't know the name of it right now because - guess what, another helpless feeling - I didn't get this information directly to be able to ask this question. Because of the craziness in my life when it comes to work, Neal took care of these appointments. I really appreciate that because I was again helpless in this regard. He, himself, heard the confirmation of seizures at the end of the day. When he called me to tell me and I told him to call back to find out the name, they were of course closing. Another helpless experience - being asked over and over again by people what type of seizure she is having and looking like a mother who doesn't know anything because you have no information on that. The reason you have no information on that is because you didn't take care of that situation yourself. What kind of mother are you? You are a helpless one. How ironic that these seizures started on Mother's Day.
Yet another helpless experience - you tell people the news and they try to say well meaning, encouraging words. I know they mean well, but statements like "things could be worse," "well at least she is starting on medication- that should take care of it," and "it is good that you caught this early" mean nothing to me. Thank you for caring, but truthfully these words are being said more for your benefit than mine. These words don't help me. They make me angry because news flash, they are yet another reminder that I am helpless. Let me elaborate, heck this is my blog, so I can. Who knows - things could get worse - I certainly didn't expect this and it is worse than before and who knows what horrible thing is around the corner. Sorry to be all doom and gloom, but none of us know what the future holds. I obviously want things to work out, but I don't KNOW that. Furthermore, starting the medication does not help stop the feeling of your heart breaking into two when you have to watch your beautiful girl have seizures, in fact it makes you feel worse. Sure, she just started on this medication, but here you are watching her have a seizure and you know she just took her medication and your inner voice screams "WHY?" in your head. With catching this early, how could we not catch this early? It is a bit noticeable that your child is doing something major when she is having a seizure like she is currently having. What we probably sucked in catching was in all types of absence seizures - just little zoning out ones - that she probably has been having. And identifying it doesn't mean you can do anything about it, hence my experience last night.
Instead of these words, I would rather you just cried with me. I would rather you just listen. I would rather just say how you feel about the situation. I would rather you just say that you don't know what to say if that is the case.
I will do what I need to do, don't worry about me. I always do what I need to do. But I just wanted to say that I feel helpless right now. I hope this treatment works. I hope I get more information. I hope in the short run the seizures stop. I am happy that I still have Quinn - that we have moments of clarity, but I fear what is around the corner. I have come to realize that Down syndrome is a blessing. That extra chromosome fills my heart full of love, compassion, and connection. It is because of Down syndrome that I have my Quinn and I would never ever change that. But epilepsy, on the other hand, is a horrific thing that is trying to take away my Quinny. It breaks my heart into two. I am trying to fight it, but deep down I know if it truly wanted to and was intent on winning, I am helpless. I long to be one of those people who has only Down syndrome in their life. But I know that is not my story. Enter stage right, epilepsy.
Sorry, I feel like venting this morning. AS USUAL, I have to go to work even though my world is shaken up and I am wondering what is going on. Why should this time be any different - I had to do that when we received the diagnosis of DS and when we received the diagnosis of IS. Now we are probably going to find out she is having another type of seizure. I am almost certain. I feel it in my heart. I also doubt we will get answers today, but will instead be tormented with this for a week at least. Then the "fun" part comes in and you get to watch these episodes and know that they aren't right and that right now there is absolutely nothing you can do about them. It is so painful and you feel so ineffective as a parent.
Why did these possible seizures have to start on all days, Mother's Day? I just don't get why when our world finally settles down something once again flares up. First my job situation flares up, then I get feeling a little better, and now this. I am in a why-why-why phase, sorry. I could also ask myself why I neglect my blog and then something crappy happens and I just come out of hiding. Oh well. I am a slacker.
Last night Quinn had what I believe and am almost certain must be a seizure while I was holding her. She turned her head. Her eye went strange. She was very tense. I said her name and she wasn't fully there. It is hard to describe, but I just felt like I knew it had to be another seizure. The whole thing was not right. I had this pain in my heart. This was the first time I was up close and personal with it. Otherwise the ones I have witnessed have been when she is playing or moving around.
I am sadly learning that the brain is everything. I was so foolish to worry about the heart, stomach, all these other areas. I can't believe that I neglected to think about the brain.
Please keep Quinn in your thoughts and prayers, hoping we get an answer and she can get some treatment soon.
If you know about seizures, please read this in case you can answer my question...please leave a comment if you have any insight into this. I am in desperate need of information...
Quinn was dx with Infantile Spasms (IS) last year and had tx with ACTH (finished up around Christmas). Things were going well. In the last few days she has started to do something strange. It started just once a day (we noticed it on Mother's Day) and then today she did it three times in a 15 minute period. She turns her head and her eye turns and she seems dazed and stuck there for a bit. Then she is back to normal. She will be going to the doctor tomorrow, but does anyone know anything about this? Can this be another seizure disorder related to IS?
I just don't know what I will do if it is something serious again.
I have been neglecting my blog. This semester has been hectic to say the least, but hopefully I will have more time in the Summer to post. I can really feel that I am not writing because I am feeling more stressed. Writing does help with my self care, so I better suck it up and find the time. Plus why have a blog if it is just gathering cyber dust.
As you know, today is Mother's Day. So I woke up this morning having thoughts about what it means to be a mother. I really don't know what I expected in becoming a mother going back to the time before I had that itty bitty dimple faced little baby boy named Riley. Ten years ago I was pregnant with him and didn't really realize how my life would change. I didn't occur to me to even consider what becoming a mother philosophically meant to me. Unfortunately as with most things in my life, I just kind of did it because it was the next thing to do. I had two other moments to think about what becoming a mother meant to me, but I neglected doing that as well when I was pregnant with strong feisty Aidan and my mini-me Quinny. I really didn't get the significance of all these moments and the journey I was embarking on. I kind of wish I could go back and look at this more, really think about what motherhood means to me before the moment of entering it.
Quinn has made me more philosophical. Especially the last year has made me philosophical. Sometimes you are given something unexpected and it alters how you look at the world. So maybe I needed to have Quinn, experience the unsettling feelings of an additional diagnosis of Infantile Spasms, and then I would get the idea to really look at what motherhood means to me. Maybe things come in the order that is best for us and at a time we are truly ready to look at them.
Well these are the things I know...I am not a "traditional" mother (if there is such a thing). But I will do whatever it takes to give my kids what they need. I will fight for treatment. I will sacrifice myself (working long hours when needed) to get them what they need. I cherish my moments with my kids. I have talks with the boys about what it means to be a responsible, loving person and the importance of understanding and embracing diversity. I have started taking care of myself more (yep I know I still work a lot, but I am losing weight) so I can be around longer for my kids. But I am not perfect. I am learning. I am always learning and most of the time I am learning from my kids, both at home and at work.
This past year has been a remarkable one. One of challenge with Quinn's health concerns and the development of Infantile Spasms. One of seeing more and more the reality that all children are not fortunate enough to have a mother who will protect them, guide them, and not hurt them. I have learned a lot through the stories of other people. I have also learned a lot through the story of my own little Quinny. When I was pregnant with her, I was expecting one thing and got another. Just before she turned two, I was expecting her life to progress one way and found out something different yet again. Motherhood is about learning as you go. Adapting. Learning what unconditional love really is. Sometimes embracing a difficult experience because you recognize that you forever changed because of it. Motherhood is about recognizing your need to grow and to learn and sometimes even your need to mother yourself. But it is mostly about the love you feel in your heart when you see your Riley, Aidan, and Quinn sitting side by side. You then realize that they are forever part of you and those little people have influenced you more than anyone else you know.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.