It's always something

In my constant quest to figure out what exactly is going on in my beautiful little girl's brain, I've considered ADHD, SPD, ODD, and the tried and not true friendly input from so-called "experts" : "It's just Down syndrome."  Well if the way she presents (not all the time, thank heavens!) is "just Down syndrome," then why oh why don't all kids with the same diagnosis act that way?   I know quite a few kids with Down syndrome that might have a few little "quirks" here and there, but they don't necessarily exhibit signs of sensory processing, attention deficit, or potential anxiety disorders. 

I try to consider all the options when starting down a path to figuring her out.  One disorder I hadn't considered before is OCD.  A dear friend called me just as I was getting ready to go have coffee with another dear friend this morning. We were chatting about this and that and I mentioned Marisa's tendency to repeat phrases that seem to have caused her some anxiety at a previous time.  Oftentimes if she gets reprimanded for something or is asked to stop doing something, she retreats into a dialogue that goes like this : "Stop coppa (copying) me!  I no like it no more.  She copied me two times!"  Or : "Stop coppa my feet, my hands, my teeth," etc., etc. ad infinitum.  Another thing she has been saying a lot lately is "Stop following me!"  I don't  know if another child said that to her at recess at school, or if' it's something she said to someone.  Her verbal skills are great, it's the context or intent that is sometimes hard to decipher.  My friend is a nurse and she has a very good working knowledge of various disorders.  When I told her what Marisa has been doing, and that it's not always just straightforward echolalia, but seems like reflecting on anxiety producing events, she said "That sounds like OCD."   Guess what?  The proverbial light bulb went off in my head!  She may have just answered a question I've been stressing over for a very long time.  Now I have more questions to ask the "expert" I am looking for who can open a window into Miss Roo's brain, and hopefully provide the appropriate treatment to help her cope.

I always tell people that I do not willingly go in search of additional diagnoses with either of my children, but am so very thankful when certain questions finally get answered.   We'll just have to see where this goes....

My own worst enemy

I had been fretting about this morning since getting a call from the Vice Principal/Case Manager for kids with "special needs" at Roo's school just before Spring Break last week.  She said the school's team : Principal, VP, classroom teacher and her aid, wanted to meet with both parents to discuss Roo's progress and make plans for the next steps.  As I've mentioned in other posts, Roo is not on an IEP.  She has an ISP for services she receives from the school district - OT & Speech, and an ILP (Individ. Learning Plan) created by her school.  Her team wanted a chance to go over their plan with us and let us know where we stand right now.  They want to start meeting every 4 to 6 weeks. 

Given Miss Roo's uptick in challenging behavior over the past several months, to a level even beyond what is "normal" for her most of the time, I had pretty much convinced myself that this meeting would not be pleasant.  I've heard over and over and over again from many different people working with her how difficult she can be.  She's had so many assessments that did not truly assess where she is and what she can do.  I take almost all of them with a grain of salt, being careful not to overestimate where she is, while making it clear to those assessing her that she should not be underestimated either.   I was feeling stressed out most of the day yesterday, playing a script in my head of what I expected to hear from them and the looks of concern on their faces.  I've known 3 of the 4 participants for over 9 years because they have all been there since Nadia started Kindergarten almost 10 years ago.   They are good people and it is clear they love the kids they work with; but, even with the best intentions, I fear the worst when going to a meeting to discuss all areas of progress.

Well, let me repeat the title of this post : I truly am my own worst enemy!  They are happy with the academic and social progress she has been making and recognize the gains she has made since last fall.  They are continually looking at ways to keep her focused and on task and have been willing to be flexible in their game plan. One issue that is not surprising is that now she much prefers to work in the little room upstairs with her aid and making the transitions in and out of the classroom are difficult for her.  She loves her fellow classmates but the structure/routine/calm of the resource room environment is what she now prefers.  So finding the best way to get her back with the other kids as much as possible, which is their ultimate goal for her (hooray!), is a challenge that will hopefully be overcome in time. 

I told the team that I was expecting to hear that the behavioral issues were getting out of control at school, but they all shook their heads "no."   I told them things have been worse at home lately, but then we all agreed maybe that's because she has been trying so hard to keep it together during the school day that she needs to release at home.  If that is the case, as hard as it is on me, I'LL TAKE IT! 

So for now my next game plan is to start whittling away at my fears and other negative thoughts and focus on all the positive that is going on in our lives.  I need to divorce myself from my enemy.

Bonding with Big Sis

Big Sis Nadia is in 9th grade this year at a wonderful, all girl high school. We are making sacrifices to send her there because we are in awe of the young women we know who go there and all the women we know who either went there as students or have been affiliated with the school in some way.  So far she has had a great year, even if her grades haven't been quite as stellar as they could be given her "ability."  She has been challenged in all the best ways academically, and has formed a big and diverse group of BFFs.   She graduated last year from our church school, where she had gone from K through 8.  Her experience there was mostly good, but it's not always the best thing to be in a graduating class of only 18.  She was totally ready to go into a much bigger pond.

One of the things I really like about the school is their commitment to service in the community.  The girls can decide whether or not they want to do a formal program and volunteer for at least 160 hours over 4 years, and if they do this, they get recognized at graduation and a nice addition to their college applications.  I've always been a big fan of volunteering, and have done quite a lot at Roo's school (Nadia's former school), my church and various agencies in the metro area.   I think it's really important on all levels to get out and help others, and it has been part of my own personal "therapy," especially since Roo was born.  So, Nadia and I have been working on her hours together this year.   She has moaned and groaned about a couple of projects I signed us up for, but she has really enjoyed other things we've done.   We have worked at a cat adoption agency, a fall festival for adults with disabilities, our local Buddy Walk and support group Christmas party, cleared a path for volunteers walking dogs at the Humane Society, and helped out at our local Food Bank.

Today we were on an urban nature trail working with a team of volunteers and staff from our local Parks & Rec.  Our job was to put in trees and shrubs along the trail to replace ivy that had been pulled a while ago.  There were maybe 15-16 of us and together we planted a total of 400 plants!  Nadia wasn't thrilled about going on this project, especially because she went skiing with her Dad yesterday and was already sore, but when we finished she had a smile on her face and she was impressed with the amount of work we all did.   I'm sure we'll both wake up a bit worse for wear tomorrow morning, but I do cherish the time I am getting to spend one on one volunteering with my lovely teen.

Weaving Roo into our story - after Nadia and I worked at the festival for adults with disabilities last fall, I told her that her sister has given her a gift that most of her friends do not and may never possess.  She gave her the gift of being able to be around and appreciate adults with challenges, to feel completely comfortable around them and see the value in each and every one.  Now she tells me she'd like to volunteer at a local hospital center for medically fragile children.  Her sister has brought a world to Nadia she would potentially never have known; and made her a much better person for it!

On differing perspectives

I'm seen a lot of blogs talking about the poem Welcome to Holland by Emily Perl Kingsley, including a nice interview with the author on the blog Love that Max.  I don't know when I first read the poem but it was sometime during the 2 months Miss Roo was in the NICU.  At that time in my life, in the earliest days and the tip of the iceberg in coming to terms with her diagnosis, I really appreciated the words Kingsley had written, inspired by her son who has Down syndrome.  I still think the piece has the ability to give some parents a great deal of comfort and help them in developing a positive perspective on an unexpected turn of events in their lives; but only in certain circumstances. 

Marisa faced what felt some days like insurmountable medical challenges for the first year of her life.  I didn't have much time to appreciate "Holland" because I was in the car driving back and forth to the hospital most days and spending way too much time pouring over medical bills and doing Internet research to try to come to grips with what we were facing given how she presented at birth.  As the acute medical issues started to wane and we had more time at home, the drive to work on developing skills, while trying desperately to meet the needs of my other child and all the other aspects of keeping home and hearth going, meant that I had little time left to stop and smell the tulips (do they even have a smell?).  I'm not a big fan of tulips anyway. 

Then as even more time passed, the behavioral challenges started surfacing, making life just that much more difficult to manage than it had been with her older sister.  That's not to say big Sis was a perfect angel, nowhere near, but I could take her pretty much everywhere I wanted or needed to go without worrying whether she would flee the scene or create a scene, or both.  Big Sis and I used to go out everyday and the only issue I faced regularly was dealing with a case of blossoming conspicuous consumption and the overwhelming drive to own every Beanie Baby ever mass-produced.  With little Sis, the time it took to steel myself mentally and prepare my psyche emotionally, was usually more than the time it would take to run the errand.  Let me stop here and say this loud and clear : I was not and have never been ashamed of my daughter or her disability, I just discovered early on that if I needed to go out to a store to get something, it was better to do it when someone else was watching my child at home. Things have been getting much better over time, but I still don't take her some places by myself.  The park is fine.  Starbuck's is fine.  The mall or grocery store are not.  Maybe we'll get there one day.

Back to Holland.  I still think the poem is lovely and see it as helpful for certain families; and isn't it nice to find uplifting pieces written by parents of kids with disabilities, especially when you are starting out on your own journey?   That said, though, I totally get why the piece does not resonate with many families and why some might even find it offensive, though that was obviously not the author's intent.  I did experience caring for a medically fragile child when Roo was very young, but that has not been the case now for several years.  She also does not have Autism, and although I know lots of people who fall on the Spectrum now, I can't speak to what it is like day in day out as a caregiver for someone with that diagnosis, especially on the more challenging side.  So, I guess I can truly see both sides of the like/loathe divide, and would place us somewhere in the middle. 

What is often the bottom line for me, though, is how would someone looking in on "Disability World" from the outside, or someone who will join our vast and diverse community one day, feel after reading a piece like Welcome to Holland?  If it offers one iota of a change in someone's preconceived notions of people with disabilities and the families who love them, then it's worth all the extra discussion.

The best things in life are free

I feel like I've only been writing downer posts, putting into words my feelings on Roo's behavioral challenges and other pressing concerns.  Well, we just had a great weekend and it's worth writing about the good stuff too, of course.  There's a short, about 1 mile, walking trail not too far from our house.  Yesterday the whole family went there to take doggy Taylor for a walk.  Marisa loves to go there and she has been known to run/jog the whole mile before.  A big plus for her is meeting other dogs with their people along the trail.  Yes it is a generalization, but it certainly is true with Miss Roo that she is a highly social animal.  Everywhere we go she likes to say hello to people and is usually very good at brightening their day in some way.  She also likes to try to meet every canine we see out and about.  I have taught her to ask the owner of the dog if it's okay for her to meet their pooch.  She asks me "Can I ask?," and I tell her yes or no depending on the situation.  My answer is almost always yes you can ask, unless I get the sense that the dog is not a kid friendly version.   Most people are more than willing to let her go up to their dog for a little face time and she is learning that if they say no, it means it's time to walk on and not pursue the request further.   I feel this is a great way for her to continue to improve her social skills and it's always a good thing in my opinion (okay, dog lover here!) to interact with dogs. 

Today we drove about an hour away to go for a family hike, pooch included again, on a great trail in the woods near Mt. Hood outside of Portland.  The sky was cloudy, which is par of the course this time of year around here, but it didn't start raining until we were back in the car headed home.  Marisa is a great hiker.  She does get tired after a while but she loves being out in nature and really does very well for a kid her age.  We were walking along the trail heading down to banks of a large, rushing stream, and we had to step over rocks and large roots plus move on and off the trail because all the rain we've had left big puddles and lots of mud on the main trail.  Daddy, Nadia and Taylor were in the lead and I followed behind Roo, mostly to make sure she was with our group at all times (she's getting way better at that).  I watched how she made her way over and around all the obstacles on the ground and was very impressed with her motor planning.  I continue to be amazed at all the new vocabulary I've learned in the past 8 years.  The idea that she got tons of great proprioceptive input as she put her feet down over the roots on the ground, would never have crossed my mind before.  So, once again, I am happy to say that living with my wonderful child and learning about her each day is the proverbial win win for me, even if I get bogged down in the negative at times.  She has taught me so much in her short life so far, and even in my darkest moments, I wouldn't trade her for anything.

The toll it takes

Yesterday Roo and I were at the hospital for her blood draw.  When she was born with TMD (Transient Myeloproliferative Disorder), she had daily blood draws to check her white blood cell counts and other factors. At one point during our 2 month stay in the NICU, the Hematologist (we had 3 who rotated days) in the department that day told me I would need to bring Roo in up to 3 times a week for additional blood draws after she was released.  Three times a week!  Then over time, and as she continued to make progress and her overall health got better, but before we left the NICU, the doctors told me she should come every other month for a blood draw.  After feeling relieved at the change in that schedule, I got worried.  How could we possibly have gone so quickly from needing to be tested multiple times a week to every other month?  Were they sure they had the right patient?  Even every other month was no breeze, though, especially given an infant with a G-tube and multiple, timed meds, plus a 1st grader to consider as well.  But we did go back, every other month, for at least a year (my mind is foggier now), and thankfully, every time her counts were normal.  Then after a year, we were able to go to every 3 months, then eventually every 6 months and finally, annually.   At age six, she was technically released from being a patient of the Hematology/Oncology Clinic because her counts had been consistently in the normal range for years, even with many pouts of petechiae (tiny dots on her face and chest from broken blood vessels, usually in her case caused by crying or coughing), and a post fever rash that her Pediatrician thought might indicate that something was going haywire in her blood.

It's always a great thing to be released from a specialty clinic, even if the thought of that is daunting.  When she was 2, she was released from Cardiology.  She was not born with a heart defect but she had complications from the TMD and a small hole.  After doing follow up testing at age two and seeing that the small hole had formed a membrane and there were no other cardiac concerns, she was released.  I shook the Cardiologist's hand, thanked him for his care and support for her and wished him a nice life.  I did the same with the Hematologist when Roo turned 6, but here we are again going annually.

Add to the plot is the need for thyroid screening twice a year.  She takes Synthroid daily and has since she was a newborn.  I have an arrangement with her Endocrinologist to tack on a CBC with diff every time he writes an order for her thyroid labs, just to be on the safe side.   Last year her WBC (white blood cell count) and MCV (mean corpuscular volume or volume of red blood cells) were off.  Her WBC was lower than normal and her MCV was higher than normal.  Because of this I contacted Hem/Onc and they told me to bring her in.  She was fine otherwise but those lab results earned us another visit.  After her check-up and a discussion of the lab results, it was recommended that I bring her back again a year later.  That brings us to this week.  Thankfully this time around her WBC is in the normal range and her MCV, although slightly elevated, is not concerning because it's coming down and is close to the normal range.  It was again recommended that I bring her back in a year from now.  So she went from a "graduate" of the clinic to back on the patient rolls again, but I'm not complaining.  I'll take her to a Hem/Onc clinic every year I'm on this earth if that helps to keep her healthy.

But, as the title indicates, there is a toll on me every time I walk through the door of the clinic.  They are truly wonderful people there and I don't mind the inevitable long wait time given the severity of what most of their other patients are facing.  What I mind is my own internal workings, my inner demons that give me a bout of PTSD for want of a better description every time we cross that threshold.  The day before our appointment each and every time I have a case of the "what ifs,"  what if she has developed full blown leukemia, what will that do to her, what further complications will that cause, and will she survive?  It's not that I don't have faith and it's not that I am the type of person that always fears the worst.  It's just that the memories made during her first few months out of my womb, and the overwhelming stress on my psyche, are seared into my brain.

I am so very thankful for how far she has come, and I can't imagine what families go through day in day out for years with their medically fragile children.  But, all my fears, sorrow and struggles to cope come back to me in a flash when we walk into that clinic.

Walking a fine line

Marisa went to an inclusive Montessori preschool where she was loved and supported by great staff, great parents, and a great group of kids.  She certainly had issues there, especially being overly physical with some of the kids, but overall it was a great two years, and I was very sad to move her on from that loving environment out into the big world.  We had two choices to consider for Kindergarten, our church school, which Nadia went to from K-8, or our public, neighborhood school.  If I had placed her at our church school I would have had one blissful year with both kids at the same location, but alas, that was not to be.  Nadia graduated from 8th grade last year and moved on out into the bigger world herself.

I chose the public school for Kindergarten for several reasons.  It was a half-day program and our church school was full-day.  The K teacher at our church school is a lovely woman but I could sense that she wasn't sure if she could handle having Roo in her class (big red flag!); and our school district promised me what I call the Holy Grail of Special Education : placement in the regular classroom in our neighborhood school with supports and services brought into the classroom to Roo.  I had fought long and hard for this, attended multiple transition to Kindergarten and IEP workshops,and did everything I could think of just shy of finding a local disabilities rights attorney to make sure my child would be included with her typical peers.  Our school district maintains several "program" classes, including a self-contained class in a grade school not far from our home, but not in our neighborhood.  I know many of the families who have had kids in that class and they are lovely families with great kids, but I was not going to agree to have that as Marisa's placement.  Even if I weren't a supporter of inclusion, the idea of placing a kid with a speech delay and challenging behaviors into a classroom of K through 5th graders with the same issues, just did not appeal to me.  I knew it would not be right for her and that she would not make adequate progress in that environment.  So, I pushed ahead with letting the district know exactly what I expected in terms of her placement and that I knew our rights and the law.  They did inform me that behavior would be the factor that would determine whether or not she could remain in the regular classroom, and I said I would cross that bridge if and when we got to it.

We made it 2 months in the regular classroom at our neighborhood school.  I won't bash the school or the staff there.  They did try to support her, and I know that at least some of them even grew to love her in the short time she was there.  The Principal was truly awesome and I stayed in contact with her for a while after we left, just to let her know the progress Marisa was making at home with me.  The problem was that my district did not provide her with the additional support she needed to be successful in that environment.  Just prior to the 4th IEP meeting in 2 months, all dealing with behavioral issues, I submitted a letter, cc'd to the director of special ed for the district and the school Principal, formally requesting a one on one aid to help Marisa meet the goals on her behavioral support plan.  In the letter I quoted from case law that specifically states that behavior alone cannot be used as an excuse to pull a child out of an inclusive setting.   My request was denied, I think on a technicality, and when that happened I could see the writing on the wall and could sense the uphill battle facing me if I tried to go further.  I knew the district wanted to remove Marisa and place her in the self-contained classroom.  So, rather than let that happen, I homeschooled her for the remainder of the year, and I don't regret that for a second.

Now I am thinking that sensory dysfunction played a role in her inability to thrive in the regular classroom last year.  That and not having enough one on one time with someone qualified to work successfully with her.  She just could not self-regulate enough to be able to keep herself together in that setting, and the school was unable to provide her with the support she needed.   We didn't (still don't) have the money to go into a drawn out legal battle with our district, even though I believe the law would have been on our side.

I know Inclusion can and does work for many children, and it is the right thing to do.  But for my sweet girl, bogged down with too many factors that make sitting still and being quiet in a seat in a large and exciting classroom, full day inclusion just isn't the best option. 

Behavior is communication

I am at the beginning of a quest to determine to what extent Roo's behavioral challenges have to do with sensory processing.  She has had issues for quite a while now with "non-compliance," being too physical with other children, running away from caregivers, etc.  The difficult thing when a child has an underlying, and highly complicating, condition like Down syndrome (or Autism), is figuring out exactly when behaviors are sensory related and which are "learned" behaviors that developed in response to something affecting them, externally or internally.  What I know now (wish I had known years ago!!!), is that parental or other caregiver response to a challenging behavior can reinforce it and turn it into a learned behavior.  Once learned, whether or not it was initially sensory related, the behavior becomes more difficult to modify.   Most behaviors manifest when a child is trying to obtain or to avoid something.   Behavior is Communication is a mantra I didn't coin but do try to take to heart.  The problem is that I am often confused by what exactly my darling now 8 year old is trying to communicate with her behavior.

When I went to pick Roo up on Friday to head off to the Speech Clinic, her aid told me she was not willing to work much at all with her that day.  She said she was trying to introduce new concepts to her and that she became more non-compliant than usual.  Not her words, but the gist of it.  I told her that used to happen when I was homeschooling her last year.  We'd be going along okay and then I'd try to move forward and she would dig in her heels and flat out refuse to do the work.  This would go on for a day or two and then something would eventually click with her and we'd start to move forward.   I recognize that she was trying to communicate with her behavior that the work was hard for her and she didn't want to try it.  When that happens, I know (and now her aid knows) that it will take extra coaxing and lots of patience to get her going again.   The great news about her aid is how much she has invested herself in helping Roo.  I can tell that she loves her and wants the very best for her.  Thank you God!

It is still often challenging to take Roo out by myself to a store or someplace with tons of distractions and stimuli.  A few years ago I was talking with a mom of a little girl with Down syndrome a year younger than Roo.  I mentioned in passing that we had finally started going to Starbuck's together and that it was going okay.  She couldn't believe that it was so hard to go out with Roo by myself because she and her daughter did that often.  Well, as with all our children, everyone is different, and what works well for some doesn't always for others. Now I'm starting to wonder if the root cause of Roo's less than desirable behavior when we would go to the mall or some other highly stimulating environment is that it was just too much for her.  Too much noise, too much visual stimulation, just too much of everything bombarding her eyes, ears, etc.  Put her in a big, open space like a mall and all she wants to do is dart away and go sprinting down through the middle.  The silver lining in that is that there is hardly any fat on that little body!   But, it makes for moments of sheer panic if I have to sprint off after her.  My knees are not at all what they used to be! 

I need to write a post on Inclusion because I have tons of thoughts on it, but will save that for another day.  I truly believe educating kids with disabilities with their typical peers to the maximum extent possible is the best practice, and the right thing to do; but placement isn't one size fits all, and for my little darling, time spent out of the classroom, one on one with her loving aid, working on concepts at her pace and cognitive level is the best thing for her.  Her team at school values her and does their best to give her time each day with her classmates, but I know the classroom environment is just too darn stimulating for her, in all ways imaginable, for her to be able to self-regulate enough to stay in the classroom the amount of time the other kids do.  I am at the beginning of this journey, though, and am hoping that with lots of support, information, and assistance from people who know about sensory dysfunction, that we can all help Roo learn to help herself deal with what is overwhelming to her in her environment.

I attended Marisa's ISP planning meeting last Monday. It's called an ISP or Individual Services Plan instead of IEP because she is in a private school and does not receive the same amount/type of services she would in the public system. At the meeting, after hearing the difficulty her SLP and OT had in doing assessments on her, and after discussing her many behavioral challenges and sensory needs, her first grade teacher (love her!) closed the meeting by sharing that she believes Marisa is the best thing that has happened to her class this year.  She said the kids love her and that they have grown in compassion and acceptance of differences so much thanks to getting to know her.  After I wiped the tears of gratitude from my eyes, I left knowing that even the darkest days are no match to what I know is right for my beloved child. 

Eight years ago today.....

I guess I'll have to consider myself an occasional blogger.  Had such high hopes of posting tidbits every day or at least every other, but that is just not happening.   Oh well.  What has been happening lately is that my little Roo Bug has been growing up before her family's eyes.  Eight years ago today, at 10:54 pm, in a labor & delivery room at Meridian Park Hospital in suburban Portland, my life changed forever.   It's funny that such a little bitty newborn baby girl (5 lbs/7 oz), who slipped into the world with a short labor and relatively easy delivery (okay so there was still plenty of pain but it was worth it), could have turned my world upside down, made me question if God hated me (low moments, sad to say), given me more stress than I thought could be possible in life, and yet prove to be one of the brightest stars in my own personal universe with the ability to make me rise above complacency and drive me, and others who have met her to a much broader worldview, more compassion, and greater zeal for those with challenges, the vulnerable, often lonely, and all too often under-served people with disabilities all around us.

My darling Marisa opened up a world to me that I had barely glimpsed before.  I don't think I was ever, in any way, callous towards people with disabilities.  I just did not take note of them.  They and their families lived on the fringes of my little corner of the world.  I knew a few families who had kids with Down syndrome, but only in passing.  When Marisa was born, my thought of what it meant to have Down syndrome was that she would have some characteristic facial features and would need help with learning.  I didn't have the slightest clue regarding the broad range of medical complications and also the broad range of abilities seen in what I now call the "spectrum" of Down syndrome.  In her first two months out of the safety of my womb, I learned more medical vocabulary and met more medical specialists, social workers, case managers, lactation consultants, the list goes on and on, than I would probably have met in my life otherwise.   The vast majority of these new people in our lives were totally supportive and respectful towards my new child.  I did receive looks and/or comments implying pity now and then, but that wasn't the norm.   Most of the professionals who worked with Marisa her first few years could not have done a better job of showing with their words and deeds that she deserved the best care regardless of her underlying diagnosis.  I am so thankful for that!  

So, fast forward to today.  Today Marisa and I brought 3 dozen little pink frosted doughnuts (special ordered from Starbucks) to share with her classmates and teachers.  A chorus of Happy Birthdays rang out as she walked into the school building.   Her family took her to her favorite restaurant and she ate a Happy Cake Pancake for her birthday dinner, followed up by a slice of ice cream cake at home.   Needless to say it's back to a more balanced diet tomorrow!   I'm planning an all class party for her as soon as I figure out when and where.  Basically life is good, especially if you're 8 years old.  

I can't say it has been easy, and I also can't say there haven't been times when I have failed miserably as a parent and at times have not deserved her; but I thank God every day for the little, wonderful person born 8 years ago today.