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Monday, August 29, 2011
End of Summer Wrap-up
First a couple of updates: The lowercase has had no further instances of temperature instability. We've added extra blankets to his bed to help keep him warm at night and that's helped some. It's also summer and less difficult to keep the house temperature consistent (not really a "problem" in our house in the winter, but here in the tundra, outside walls will be COLD and due to the size of his room, our choices for his bed location are along the outside wall of the house or under the window). He also seems to have gained a bit of weight, though he's also gained a bit of height...
Now for the latest in our lives. We've had a summer of highs and lows. My stepdad, the man who did all the jobs of father from the time I was 5, the man who walked me down the aisle when I married Mr. W, the man whose name was given to the lowercase, was diagnosed with stage 4 colorectal cancer. The cancer is only in two spots in his body - one colorectal tumor, and several lesions on his liver. He's got 6 months of extremely intense chemotherapy which will hopefully be followed by a liver resection and colostomy surgery. We're all a little shellshocked.
My grandparents continue to struggle with grandma's Alzheimer's. And of course my parents are their primary source of assistance - cooking for them, going with them to doctor's appointments, and just generally offering support. My stepdad is also the only one of his siblings who lives within 20 minutes of his mother - and while she is living independently and in good health, there are still a lot of times she turns to my parents for help. Like earlier this summer when she came home to find her house had been broken into. Thankfully at the time, we were visiting and were able to help out with getting my grandma to and from the police department during the investigation (and the lowercase was allowed to help the crime scene investigators with lifting fingerprints - one of the highlights of his summer!) My parents' ability to help out all of the grandparents has become much more difficult with my stepdad's diagnosis and treatment and the combination of the two caused them to make the decision to sell their restaurant.
Because my parents will need a lot of extra help and I'm the only non-employed family member (and don't have a financial need to change that status), we've decided that the lowercase will not be attending the local kindergarten as planned. I've enrolled him in an accredited online private school instead. This way we'll be able to travel as needed - all he needs is for me to remember his books and have an internet connection and he's good to go.
This decision also led us to one of the highest highs of the summer. In order to set his curriculum and make sure his needs are met, the online school does a bit of testing to see where students are at academically. At our local school, they simply test to see if the student has mastery of pre-kindergarten skills. The online school tests what they know and because it is a computerized test, it keeps going until they can't answer the questions. We then talked with a placement specialists to go over the results. She started by telling me that he tested above grade level for kindergarten and asked if that was expected. I told her that the possibility wasn't UNexpected. My son tested into second grade. Because I don't want him to be too frustrated, we decided to start the school year as a hybrid 1st/2nd grade and will adjust as needed.
I am just so proud of him. But I got a shocking jolt when I posted about it on Facebook. I had several friends tell me just how wrong I am to even consider letting him do advanced work! I was completely shocked. I'm an elementary teacher when I'm not a stay-at-home mom. Several of the women that I taught with were among the people that told me not to do it. The reasoning given by all of them: "He'll be so bored when he transfers to a regular school and being that far above grade level, the teachers won't know what to do with him." I was floored. Nobody would dare say that I shouldn't meet my child's educational needs if he were delayed, but because he's advanced there's an assumption that I shouldn't? I...don't get it. I have begun repeating to all of these people that I intend to do what it takes to meet his educational needs and that if, as they assume, the local public school can't meet those needs, we'll put him in a school that can. It's just like any other special need - you do whatever it takes to get your child the educational services they need.
With all that has gone on with those situations, plus the ever-present family dramas... I think I'm really looking forward to the start of the school year and, hopefully, a more structured new "normal."
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Saturday, April 30, 2011
The scars remain
I’ve thought about writing this all week, but haven’t found the right words. I wasn’t sure how I could write about something so intensely personal, something that people in general just don’t talk about - mainly because it’s not something we know how to talk about. But today marks the last day of National Infertility Awareness Week, so it’s time for me to figure out how to talk about it.
As my friend Kym pointed out, infertility doesn’t end when you finally become a parent. It’s not something that has a sudden “cure.” Beyond that there are so many causes and variants that most of the well-meaning advice people give doesn’t apply. My personal infertility is due to a malformed uterus. Sure, I can GET pregnant, but I can’t STAY pregnant full term. I thank God every day that even though I delivered my son very early, my body managed to hold onto that pregnancy longer than all the others, long enough for him to be big enough and strong enough to fight for his own life in the NICU.
When we first began fighting to have a family, I thought that once we had children, I’d be able to close my eyes to where I had been – that it would become nothing more than something that “happened.” But it definitely didn’t turn out that way for me. It tested my faith in God; it tested my marriage; it changed who I am as a person and how I view the world. While watching coverage of the Royal wedding, I listened to the prayer for them to have a family and my first thought was “I hope they’re not infertile – I can’t imagine going through that with the world watching and giving “helpful” advice.” And of course infertility has changed the way the family we have looks. We always planned to have “children” in the plural. Mr. W wanted 2, I wanted 3 – but that was something I was sure we would figure out in time. But the emotional toll of infertility and the premature birth of our son coupled with the risks of subsequent pregnancies were too much for him. He doesn’t want to step back into those waters. So I’m left with an intense gratitude for the family that I have and feeling a deep loss for the family I could have had. It’s unlikely I’ll ever know what it feels like to have a daughter (a daughter I have imagined since I was a little girl playing with my dolls, a little girl whom we had already chosen to name Kathryn Grace). In the picture of our family that I’ve carried in my mind since we got married, I now have to erase the little girl with long dark hair. I have to stop dreaming of Girl Scouts and ballet classes and shopping for prom dresses.
My friend is right. Infertility isn’t over when you have a child. My issues can’t be fixed. The emotional scars remain alongside the physical ones. It hurts less most days, but those wounds are still there. I will never be exactly who I was before. I wish that I could be, that things could have been different. I’m just happy every day that I was finally able to carry a pregnancy long enough to have a son even more incredible than anything I could have imagined him to be. And while I’ll always wonder “what if” I know that being his mother is enough.
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Tuesday, March 15, 2011
Sunday night we had the scariest moment since leaving the NICU behind us more than five years ago. The lowercase came into our room at 2am saying he was cold. He got into our bed and asked to be covered up and immediately fell back asleep. When we covered him, he wasn't just cold he was cold. As cold to the touch as he was the day we had to return him to the NICU as a baby. His first temperature readings (we took one, then tested the thermometer on ourselves to be sure it was working, then him again) were 95.6 and 95.9. Mr. W called the pediatrician while I pulled the lowercase, sleeping in just a tee shirt and underwear, the same as me, up onto my body, wrapping my bar legs around his and sliding his arms inside my shirt and cocooning us both in blankets. In the 30 minute span between wrapping up like that and leaving a message for the doc on call, his temp came up only 0.5 degrees. He was still just SO cold. We were told that because of the lack of any other symptom at all and because his temp was above 95 degrees, that a trip to the ER in the cold night would be more risky than beneficial. However, we had to get that temp up NOW. So at nearly 3am, I woke my son up, got in a warm bath with him to both hold him up and hope that my body heat would help him warm up faster. Mr. W put a towel, a blanket and a pair of flannel pajamas in the dryer to warm. After 30 minutes, his temperature was finally back to normal and the doc on call said to call for an appointment in the morning. He slept with me, bundled up and snuggled close and his temp remained normal all night and throughout the day Monday. Our appointment was scheduled for 5:20 in the evening, so we just waited not knowing what had caused the temperature drop.
I don't know really anything from the appointment. His temp was a bit low there, but not something that couldn't be "normal" - roughly 97 to 97.5 degrees during the appointment. The ped was concerned about what happened Sunday night, but lacking any symptoms of anything else... there just isn't anything we can logically think of to test. He said that since this isn't something that one generally sees, he wouldn't know how to go about testing or whom to refer us to fora hypothermia workup. We discussed that he is extremely thin -- he weighs EXACTLY what he weighed in October at his 5 year physical. So was Sunday night's episode related to some asymptomatic viral or bacterial infection that he's fighting off? Or was it kind of a "perfect storm" of conditions that allowed a child with a BMI in the 3rd percentile to just ... get cold? When he had a temp plunge as a baby, it was assumed it was conditional (it was December, very cold, and he was a VERY tiny baby) and that his lack of body fat made it that much harder to raise his temperature once it had dropped. So is this the same thing? Or is it just a weird fluke...something that just happened?
Which led us to the fact that he doesn't seem to gain fat and that all weight gain seems to be in correlation to height gain (as it was in the NICU; which, again, was assumed to be the cause of his temperature instability that kept him in the isolette far longer than we had expected given how well he was otherwise doing).
We don't want to go crazy testing for anything and everything willy nilly because by all rights, he seems to be a healthy, normal THIN boy. We also don't want to ignore something that might be something just because he seems so normal and healthy. He acts fine. He's bright, engaged, active - by all appearances he's just a normal, if precocious, little boy.
As a baby one test showed him to have odd thyroid levels - the showed that he should be expected to be on the heavier end of the spectrum and yet he was the opposite. It kind of made us scratch our heads, but he was so normal, there were other things going on and we agreed with his doctors that it must have been lab error and that we just didn't want to stick him another time for no real reason.
We've battled constipation off and on with him since he was born. He came home on prune juice to keep things working. We thought that was an immature digestive system due to his prematurity. Is that related to what happened? To his size?
We left with a plan. We watch things, we live our lives and see how he does. If he has a problem, we go in right away. If things are just normal every day life, we wait and see the ped in July for a well visit to check height, weight, temp and BMI. Then we'll have his 6 year physical in October as usual. We want to watch his growth more carefully and see that he's staying on the curve (albeit a very low curve, about the 5th percentile) rather than flatlining or falling off. It still could be that he's just naturally thin. Or it could be that he's actually not. The ped said (though he doubted it) that we could be looking at a diagnosis of "failure to thrive" at which point we would start testing...something.
We also mentioned that on Monday my 9-year old nephew was given a preliminary diagnosis of celiac disease pending the results of some blood work that aren't back yet. His only symptom had been constipation that began about a year ago and progressed to some pretty severe problems rather quickly. (Though up until the apparent vomiting of fecal matter, his symptoms appeared very similar to the lowercase) Celiac disease is hereditary so our ped thinks that if his cousin does have it, there could be a chance that the lowercase does as well which could explain some of the constipation, some of the thinness due to inability to absorb nutrients. But of course, we don't want to make assumptions and jump to a (difficult at best) gluten free diet if that isn't called for. So for now, we wait, but we at least have an idea of where to start testing if we see that there is an actual need for testing.
I just don't know what to think. Our plan is very reasonable, in my opinion, and logically I know it's best and am comfortable with it. At the same time, it's killing me to hear that "failure to thrive" is even a possibility. This sounds so conceited and ridiculous but that kind of thing just doesn't happen to people like me. I followed all the rules! I have paid extreme attention to his diet from the minute he was born. We buy organic foods! We're a family of foodies for crying out loud! I just feel like, as a mother, that one phrase says more about me than about him - that I didn't do something right, that I missed something, that it's my fault. Honestly, he's always been around the 5th percentile once he reached the charts at all, so if it's now deemed failure to thrive, then he has ALWAYS been failing to thrive -- that's FIVE AND A HALF YEARS of mama failure.
Of course it could all be tiny issues, completely unrelated, he's just thin and in a world riddled with obesity, isn't it good that he doesn't have that battle to fight. For now, we wait, we watch things, and try not to worry until there's cause. Good luck on that one.
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Friday, June 18, 2010
I'm still here...sort of. I'm still alive.
I'm busily trying to re-envision my life. Since our match with our wonderful GS and friend ended, I feel an even greater need to find myself.
Most of the time, during the daylight hours, I don't have time to think about my life beyond the here and now. I have an incredible (and active!!) 4 year old boy and our days are full. But in the evening, after he's asleep, I have too much time to think. I find myself unable to fall asleep until 1 or 2 am every night. I don't know where my life will lead. At this point though, if I'm being honest, I have to say that I really don't see there being another child. Not now, and in all likelihood, not ever. During the day, this is enough. I'm not sad most of the time. I'm able to breathe. I wonder though, when those daytime feelings will last through the night.
A few days ago, I got fairly late into the evening still comfortable with the idea of calling it quits with one child. I decided that it was time to do some googling to see about permanent methods of birth control. As search results for tubal ligation and vasectomy popped onto my screen, my chest constricted, my breathing became shallow and I had to bite my tongue in order to not scream NO. The tears came. I don't want that. I don't want to give up. I'm trying to force myself because Mr. W, who had compromised and said we could try has since changed his mind. He's again convinced that his family is complete. So, in the end, I don't think it matters how I feel about it. It's just over. There is no chance. There is no hope. All I can do is pray that I can live with the decisions that he has made.
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Tuesday, May 04, 2010
Disconnect
Since the birth of the lowercase, I've had such a hard time knowing what to do with this blog. At first, parenting was just so all-consuming that I didn't have any spare time to write. Then I got to the point of having only one thing to say and there were only so many ways to say it. So I didn't write. Then we made our decisions, we knew what direction we were headed in. Still, there was little to say until we had made it to actually acting on that decision. So I didn't write. Progress was made, we were moving forward, I was happy and excited...but we were still waiting. Other than knowing that we were moving forward and with whom, well, there wasn't much to say.
After so long in this holding pattern, I'm just feeling a total disconnect in most areas of my life. The only area in which I don't feel that way is in my parenting of the lowercase. But I am feeling it absolutely everywhere else. I wish that I had other words for what I'm feeling. I wish I could analyze it all well and have it mean something. Instead, all I feel is a disconnect. I don't feel close to most of my friends -- we're all in such different places in our lives and families now. I don't feel I am on equal footing. I can't commiserate when they discuss their parenting dilemmas. I have one very easy 4 year old. They all have multiple children and have to juggle their needs. I feel the disconnect with Mr. W -- someone who has been my closest friend and strongest supporter for 12 years. He's been traveling a lot (in fact, we've only been home and in the same state for about 4 weeks since November). I don't feel like I'm much of a priority to him. The lowercase comes first, then his job and somewhere at a distant 3rd is me. I get the few minutes of his time during the day that aren't filled with work or the lowercase. And, more often than not, by the time that rolls around, the time I get involves sitting in the family room watching TV together. More often than not, I'll fall asleep at some point, he'll finish watching whatever show and we'll go up to bed.
So, here I am. Feeling completely disconnected from my life and having no real tether.
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Tuesday, February 16, 2010
I am having a bad day. I don't feel well. I'm battling to get my child to eat something other than his usual foods -- to add actual fruits and vegetables of some sort to his diet. This led to a LOT of yelling this morning. More than I am happy with. Enough that I ended up crying and more angry with myself than I think I may ever have been. Enough to make me question whether I really am a good parent. So, yeah. I'm having a bad day.
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Thursday, February 11, 2010
2.11.10
I'm not usually one to be all "gushy" with people. I try to let my actions toward a person show them how much I care more than my words. But today I have to break that rule -- Kym simply isn't near enough for that to be possible.
Long before we were officially matched, I admired her in so many ways. Through her blog, her message board posts, and her e-mails, I came to realize that she is kind, intelligent, thoughtful, funny, warm... I could go on and on. I have to say that the day that she agreed to be our surrogate ranks among my happiest days.
Since that day, I can't even count the number of times that I've opened up her surrogacy profile on my browser and smiled as I read her words.
And, because I am terrible at remembering dates, I kind of didn't realize until last evening that today is her birthday (officially making us the same age...for the next 5 months at least). I felt terrible about it, but when I admitted that, she said that she's pretty bad at remembering dates, too. Which only makes me love her more -- yet another thing we have in common.
Happy birthday, Kym!! Here's hoping the coming year brings nothing but good things!
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