Without really having anything organized to write about (though if I had time I would organize around this) I'm writing for the sake of writing. I've made myself a daily grade sheet, and it's a list of five items I want to accomplish each day. Well, I want to accomplish at least four, and if I do that I give myself an A. Three is a C, and anything less than that is unacceptable. I've been unacceptable a few times in the last week so I need to improve on that. But, one of my four items is writing. Hello.
I gnawed on something that happened today to the point that finally I was infuriated. Clara had two doctor appointments this morning, and I'm happy to report that her platelet levels are still climbing (98,000! We're getting there!) and her ASD in her heart is non-threatening--though it's medium size and if it doesn't close on it's own we will likely be looking at surgery in two years. And of course, none of the previous is what infuriated me.
Let me start by saying I don't ever want to become one of those parents who are jaded by the experiences of having a child with a disability. As an example, some have taken offense to recent stories (a homecoming queen and a team manager are recent news events) featuring people taking action to do positive things (or what they perceive to be positive--I guess that part is up for debate) for children with Down syndrome. These parents are insulted because their interpretation is that the story is about the do-gooder and not the child, and the child is simply being used.
It is my opinion that anything generating positive buzz for our children is welcome; and by me it is received with nothing but hope--hope that the acceptance and kindness become the norm rather than newsworthy. As for the jaded parents, I fear that their voices will scare the potential future of acceptance further from our grasp. Who wants to be chided for doing what they believe is good?
Perhaps the jaded parents are just overly sensitive. Perhaps I am getting dangerously close to being there as well. Our negative experiences start to add up, causing us to lose hope and to feel isolated.
You never see it coming when it slams into you. It happened to me at our first appointment this morning, with the cardiologist.
Everything was going fine. Clara was good during her echo-cardiogram (though her brother was a different story), remaining relaxed and sleeping through the procedure. Then she had her EKG, which pissed her off but passed quickly enough.
Before the doctor came in to summarize her findings I was interviewed on Clara's medical history by another one of the staff. She asked a series of normal questions regarding family history, Clara's medical history and allergies, and finally she wanted to know why an echo had been performed right after her birth. Expecting that she knew, I stated: "I assume because she has Down syndrome." The interviewer stopped writing for a moment. It was then that it dawned on me that they hadn't been passed this information from the pediatrician, or if they had they failed to retain it.
The cardiologist immediately struck me as cocky, getting right up on me to ask her first questions as she peered down at Clara in my arms. Her questions were mainly aimed at understanding the perinatologist's findings. Then she asked me: "So did you know she was going to have Down syndrome before she was born?"
That was the question that I stewed on. What did that have to do with where we were now? She may as well have said, "Too bad you didn't catch the Down syndrome before she was born." Something in her tone implied anyone would have terminated the pregnancy.
I didn't get sassy, but if I could live that moment over I would have a well-crafted and nasty lesson about a mother's love for her. I've decided that I'm going to ask the pediatrician to refer me to a different cardiologist for our follow-ups on her ASD. This is like the perinatologist experience all over again. After today, and with all the doctors I've met in the last few months, I feel I can say with a reasonable amount of expertise in the matter that 1 in 3 has lost touch with humanity.
Part of me knows I could have totally misinterpreted her intention. But the rest of me knows I didn't.
Does my anger over a simple question make me jaded? Am I becoming what my innocent and inexperienced self kept saying she would never be?
Half of me thinks my reaction is reasonable. It's the other half that is here questioning.
The awesome Meriah Nichols created a blog hop to commemorate World Down Syndrome Day. She is looking for a fact, a fallacy and a photo--related to Down sydrome, of course.
I should have created this post 2 days ago, but 2 days ago I had already started yesterday's post (it's taking me two days to complete a decent size entry these days, and some just aren't getting finished) and today has been crazy. Clara hasn't been feeling good and has been a little crank all day. Right now she's napping and this has been calling me--for 2 days.
First, I offer you a fact: Anyone can have a child with Down syndrome. It doesn't occur because of something the mother or father has done and it doesn't discriminate by race. Trisomy 21 is a naturally occurring chromosomal arrangement. I like to say that Clara is rare because it only happens in approximately 1 in 700 births.
There are lots of fallacies associated with Down syndrome, but I think the craziest one I've heard yet is babies born with Ds "are already the highest angels in God's kingdom." That is a direct quote. Now, I have no scientific information or tangible evidence to refute this statement, but I think this may be a spin-off of the ole "children with Down syndrome are always happy" statement. Maybe.
The truth is, Clara might be sweet, and she might be precious, but she's no angel. She's quite the little fussy, bossy britches and everything about her tells me she's quite human.
It scares me when people talk like that. Please don't ever talk to me like that. Thank you.
Last, I give you the photo of little Clara as she was today on 3.21.
In honor of World Down Syndrome Day on 3-21 this entry is directed to any expecting parents who have received news that their unborn child has Down syndrome and who may now feel they are faced with a decision.
Dear Expecting Parent,
First, congratulations on your conception and the beautiful child you now carry. I want to assure you, as someone who has been in your shoes, you still have much to celebrate.
Your OB had suspicions and probably referred you to a perinatologist to receive a positive diagnosis of Down syndrome. Perhaps that doctor has advised that you terminate, or perhaps you were lucky like me, and you found a perinatologist who treated your unborn child like an individual with individual needs. But either way, you have received news that you carry an imperfect child and you fear that imperfect child won't satisfy the vision you had for your family.
Your heart is broken.
So was mine.
We all want the absolute best for our children, and society tells us Down syndrome is a bad, bad condition. I believed it, but since I knew I was keeping my child (termination has never been an option for me) I started educating myself. Be assured, I'm not writing this to judge. I'm writing this to inspire you to educate yourself.
Let me tell you about Clara Sue, though my words cannot possibly describe to you the immense beauty she possesses and the overwhelming love I have for her.
She is imperfect--just like my other children before her. Sometimes she cries and I can't figure out exactly what it is that she wants. We go back and forth, from my arms, to her bottle, to her binky, to her crib, until finally, she is satisfied with one or the other that she had been previously offered, but now suddenly she decides it's good enough. She wakes me up in the middle of the night when all I want to do is sleep. And she constantly breaks my heart just by being so bad it makes her darned cute!
But all babies do those things. And even when it seems like they're being bad, all babies are good. They do cute things that bring tears to your eyes and make you realize how fortunate you are to be their parent. Clara does that, too.
But then there are the specifically Clara things. She has soft, gorgeous dark hair framing her petite face that glows like an angel when she is peacefully asleep. When she starts nursing she clenches her fists as if she can't control her excitement at being at my breast--finally! When I nurse her at night in bed, she finishes and puts her arm on me, as if she is hugging me; she loves to be close and I've decided she is the world's best snuggler. When I undress her for her bath and hold her up to place her in the tub her legs spread as if she is coming in for a landing. This always makes me laugh. When she is calm and I hold her to watch her face she will make eye contact with me and hold that gaze, and I see so much there. I see a future for her and for us worth living, and I see this child will be the love of my life.
Clara is an individual with an extra chromosome. She has 47. But she still has feelings, she still does all the things that other babies do and then some, and she already gives a lot of love and wants to be loved in return. Just like her siblings before her who each have 46 chromosomes, I don't know what the future holds for her. Only time will tell.
The only thing I know for certain is that she's my daughter and I'm thankful every day that she is here.
Your imperfect child may not satisfy your vision of your perfect family, but I have news for you: neither will any other child. I have two who are grown and almost grown and they are not who I wanted them to be, but I love them just the same. Turns out they get to decide who they will be. Who knew?!
I can't tell you what problems your unborn child may face, if any. I can only tell you that Clara appears to be a healthy and thriving little girl with a lot of personality and her momma's heart in the palm of her tiny hand. All children are different, no matter what labels they may carry. Read stories from other parents; join groups. Educate yourself before he/she gets here so you are prepared for any health issues should they be present.
There are free resources all around you, including within your state. My daughter is already receiving free aid from the state in the form of bi-weekly visits from a therapist (called early intervention). Their goal is to help make Clara "all that she can be."
I look at Clara and I don't see any reason why the right to be here should ever have been taken from her. I look at Clara and I cry for other children who don't get the chance that she has simply because someone found an extra chromosome. It doesn't seem fair, especially when there is absolutely nothing wrong with who these children are, and that is that they are children.
Your heart is broken but soon it will be full.
There is so much to celebrate.
posted by Kel
The last week zipped by me. Goals slid by unaccomplished and I have a neglected list of "to dos" on my phone that I never even got a chance to look at. What did I do with a whole week of time? I juggled babies. One morning felt like all I did was change poopie diapers, but most mornings and afternoons I really felt like I accomplished very little. And I suppose the accomplishments were/are small but as a whole they are gigantic, as evidenced by two happy and healthy children.
I felt celebratory to see Friday come along, as it was the signal to the end of a very boring week. I hope that the more I adjust to staying home with the tinies the easier it will all get and maybe I can squeeze some "me" things between the mundane.
But right now Clara still has on average two doctor appointments a week, and now we are beginning her EI (early intervention). We had a short visit with a coordinator from the state, as she visited us at home to present the highlights of the program. Next Friday we meet Clara's assigned provider (therapist). It sounds promising and I'm looking forward to learning about ways in which I can help Clara to "be all she can be" (their words).
Although uneventful, the week was as a whole very positive. It started at the pediatricians on Monday, which the only point of the visit was to weigh her and the great news was she had gained weight. She tipped the scales at a hearty 6 pounds 8 ounces. The doctor was relieved to tell me he'd see us back in two months.
|Dressed up for her Friday visits.|
It was a great week for Clara, medically speaking. We also finally got her eye appointment scheduled for the end of the month. Next week she sees the cardiologist.
Friday night Cxdy and I decided to prepare a Mexican dinner (or if you want to be technical I'm sure it was more Tex/Mex) of enchiladas and rice. I popped in an Alicia Keys cd I had picked up earlier in the week and as he created the enchiladas I worked the rice from a recipe a friend on Facebook had sent me (she's Mexican so it had to be good--and it was). I made myself a margarita to aid in my relaxation (oddly, I find cooking with Cxdy to be relaxing) and sipped it as I stirred ingredients with one hand and gently bounced Clara in the other. Lxkas played around our legs, occasionally requiring chastising as he dug through the lower cabinets, as is the norm.
The music, the food, the company, the drink--it was all perfect. This was Mommy, Daddy and the tinies in the kitchen doing their thing and enjoying it, and I took a moment to pause and enjoy it.
I guess boring has its rewards.
Today Clara is three weeks old. Tomorrow is her due date. I am eternally grateful to a perinatologist for getting her to me as she is and I am thankful for the blood test that gave the perinatologist reason to monitor her progress in utero. Everything to this point has worked out to keep my little girl safe.
If Clara ever buys lottery tickets I would say her odds of winning are fairly decent. After all, her odds of having Down syndrome were less than 1%, her odds of being born with a congenital heart defect were less than 1%, and now if she has cataracts her odds of having those were 1 in 5,000 (a fraction of a percent, but I'm not going to do the math).
Her growing list of problems have been on my mind all day. The pediatrician called this morning. I was expecting his call, too. What can I say--my gut has been on target lately. She still has jaundice (I knew it), but it is an acceptable level and we'll just have to monitor it. But, something new has come up.
The morning after she was born the pediatrician had come to visit with me and discuss his findings. One of them was her blood platelet level being somewhat low at 91,000. He wasn't too concerned but just felt he should mention it. Then when we had gone for her first office visit it had gone up to something like 120,000. Well, results from the blood draw yesterday show it is now down to 52,000.
I looked this up via Dr. Google. The medical term for her condition is thrombocytopenia (I doubt I will ever attempt to pronounce it, though in my mind I do. It's easier there.). According to WebMD if her levels fall below 50,000 excessive bleeding could occur during injury. 150,000 platelets per microliter is the normal level. She is way below normal.
The thrombocytopenia itself isn't a major concern; the greater concern is the cause. Something is causing it so her doctor is sending us to a hematologist on Friday (who happens to office at the children's hospital) so we can hopefully find out. The pediatrician said that after talking with her they suspect it could be a virus that was dormant in me and passed on to her. He did say a specific virus but my brain didn't retain it. It was busy recording information it thought was more pertinent. If it's viral that's fine. We'll move past it. In fact, I'm just going to keep my fingers crossed that's all it is.
I told my mom this morning that now Clara has three unknowns. The severity of her heart condition (though the doctor said yesterday it sounds strong), whether or not she has cataracts, and the cause of her low platelet levels. Mom was quick to correct me that there were four unknowns, adding her feeding problem to my list.
The feeding problem is the only one I feel I can fix and that is my focus for the rest of the week. Come Monday she is going to weigh more. I am determined.
Oh, and Clara's odds of having thrombocytopenia at birth? Less than one percent.
In honor of World Down Syndrome Day on 3-21 this entry is directed to any expecting parents who have received news that their unborn child h...
Earlier I thought of a conversation I might one day have with Lxkas when trying to explain his sister's condition to him, because I know...
The awesome Meriah Nichols created a blog hop to commemorate World Down Syndrome Day. She is looking for a fact, a fallacy and a photo--re...
One week ago today I was sitting in a hospital bed awaiting the arrival of my youngest--a sweet daughter. Earlier the previous day the per...
I wanted one more child so Lxkas wouldn't grow up being an only child. His siblings are 15+ years older than him. My vision was two li...