Thursday, June 30, 2011

Happy 6th Birthday Booferd





Our first born, Booferd de doo, aka Charlotte Grace, would have been six years old today. We celebrated three birthdays with our special girl, and now, three without. (not counting her Birth Day, that is.) Luckily the sour mood I have been in for a couple weeks has lifted, as well it should! Boof's birth day was the brightest happiest day of my life, and not a day to be looked back on with any semblance of sadness. It was incredible. After she was born I had no pain despite having been in labor all day and then having a c-section. I was on an incredible high and it wasn't from the drugs. The memories are sharp and clear and I felt like I could have run a marathon. I have not had the same experience with my other kids births. (Not even Ava's...that day was exhausting.) Charlotte's whole life was like having a window to heaven in our home.
For the past four years we have celebrated Boof's birthday with a little backyard BBQ at a dear friend's home. This year we decided to celebrate Lily's at the same time, due partially to the fact her birthday is less than a week after Ella's and also because a warm bright summer BBQ seems the perfect way to celebrate such sweet little lives.
It has been no secret that Lily's Birth day and entire life was much more touch and go and difficult than Charlotte's was. It was hard. Charlotte's was hard too but there was enough joy and incredible highs to soften the worst moments. Lily was a little too close to heaven to stay firmly on this earth. Every other moment she was being pulled away. I thought about that fact when we released pink and white balloons into the warm June evening last weekend. What a fitting tribute for a little girl who wasn't meant to be grounded here for long.
We love you little girls. One more June closer to being with you both again.

Tuesday, June 28, 2011

Enjoy Life!



This guy sure does.

Sunday, June 26, 2011

MAD SKILLS



Check out my mad hair skills. This is my first veil style attempt. Yeah mom, you got mad skills! (please ignore Ella consuming her somewhat-good-at-church-reward-sucker instead of her healthy balanced lunch) I am enjoying recording my hair learnings as we go, as I learn to part somewhat and twist and braid and one day cornrow, so I can look back and see where I've been and how much I have grown.
Because--(and here comes my weekly thoughtful post)--continuing to grow is what life is all about. I've been down this week for various reasons, some of which I've documented in prior posts. Today after struggling through the first hour of church with my wild, loud, poopy girls (yes, Ella announced during the meeting "I'm pooping! I did it! Change my diaper!") I got a chance to sit with my husband during the second hour and feel sorry for myself and pick at my nails and make deep sighing sounds. Then during the final hour, I sat alone, and realized that I'm being a boob, and I'm not the only one who has suffered, I'm not the only one asked to do things I would rather not do, and hanging out stagnating like I would like to do probably isn't the best thing for me or my continuing maturity aka eternal progression.
So yes, I would prefer to just lay around and rest and take a year or two off to be a mom of two tiny wild poopy girls, and apparently Ella would like to continue to use a diaper for the foreseeable future. Just this morning when I presented her with her potty she screamed "NOT YET MOMMY!" and ran upstairs sobbing for a pull-up. Which is just what I've been tempted to do. (well, sort of.) So here's to developing mad skills, whether they be hair related, potty related, or actually practicing what I preach.

Wednesday, June 22, 2011

Summer Grubbin'




Remember that sleepy itchy grubby dusty sore feeling you had at the end of a good long summer day? Well these kids know it well. Here's to summer grubbin!

Tuesday, June 21, 2011

Welcome to Italy




I'm feeling a bit fragile this week, what with Charlotte's birthday coming up. It's making me act like a jerk. Not wanting to see a friend's new baby because he will be small and cute and soft like Lily was last I saw her. Not checking blogs of close friends from our special needs world because I feel left out or something similar. Feeling resentful that old therapists and nurses and docs from our past don't just call up to say "Hey" and exclaim what incredible kids were Boof and Lily. Like everyone is moving along without us. Ridiculous, I know. Here I suddenly find myself in Glamorous Italy and I'm really missing Holland. Special Needs is a family, and it's a good one. It's close and strong and there to hold one another up. Once you are in, you are never out, even after they come to pick up the oxygen concentrator. My feeling left out is all my doing. Truth is, I just don't like the grieving. The sudden kicked in the gut feeling. The quiet. The look Non-Special Needs Family people get when they find out I've buried half my children. And the fact that I tell my story so matter-of-factly, because it's just my reality. Lot's of people's worst nightmare, my every day.
I miss my snuggly girls. Charlotte was a supreme cuddler. When I woke up terrified in the night thinking I hadn't turned on her oximeter alarm, I could go in and lay with her and hold her little chubby hands and bury my face her in thick coarse hair, smell her sweaty head. Lily slept between us the last few nights of her life, which was difficult with the feeding tube and pump and oxygen, but so worth it. I could lay my hand on chest or squeeze her foot. Hear her breath.
Lately after I finish reading to Ella at night, she immediately announces "I want to sleep in mommy's bed." Zar tends to not come to bed until very, very late, or very early, depending on how you look at it, so I let her. I love having her there, listening to her suck her thumb and sigh, being woken up suddenly by a grubby foot to the nose, but she will not have the snuggles. "NO!" She squawks. "MY PILLOW! NOT YOURS!"
After she falls asleep, sometimes I can lay my finger in her tiny curled hand, fingernails pink and chipped and slightly sticky. Usually she lets it be. Then I sigh and think on the difference between my girls. Two gave their whole selves to me to care and cuddle for, and the two who, already, are running away from me at the park, climbing out of their high chairs and only accepting hugs when they have scraped knees or bonked heads. Or are asleep.
There is a sweetness and sacredness to the absolute dependency I once knew. I miss it.

Daddy's Girls







Happy Belated Father's Day to my dear husband, Daddy to Princesses and Queens. We Love You.

Tuesday, June 14, 2011

Six Years Ago


Six years ago I was in my last days of waiting for Charlotte. One day I came home from work, sat down on the mattress that was our bed at the time, and self shot this picture of my pretty little 24 year old first pregnancy belly. (Don't worry, my lower hand is strategically covering the stretch marks.)
I was feeling serene (at least that day) because I thought this journey was almost over. Within a couple weeks I expected to be induced, deliver, and hopefully, hope upon hope, spend a few precious moments holding my first born daughter before she died. At that point we prayed daily that she would be born alive. That she would breath. We didn't dare think she might breath and live and for the next 3 years and 8 months. And we were terrified of what might happen if she did.
So in this picture, I'm thinking in just a few weeks, after I go through the hardest days of my life, I will be free to lay in bed and heal and cry and read. I will spend a week in Hawaii with my family to just be away. To reflect. I will come home and go back to work. I will never really know this poor little baby inside me, this flawed and yet perfect little spirit we would name Charlotte.
I didn't know the brightest, sweetest day of my life was just around the corner. And that the journey was just beginning.

Thursday, June 09, 2011

Some long winded ramblings


When I was in high school I was a big fan of Deana Carter--a country singer I haven't heard tell of in years but who became popularized by her song--"Did I Shave My Legs for This?" I loved that song--even wrote my own version "Did I Waste Five Good Months For This?"about my first real romance which only lasted...you guessed it...Five Months, but in retrospect seemed like it dragged on for years.
Anyways, Deana's whole album was fantastic, especially "Strawberry Wine" (come to think of it maybe that one was her mainstreamer) and "We Danced Anyway." My best bud Bink and I went to her concert when she came, out in a dusty field in Murray on folding chairs. It was AWESOME. She played barefoot and we were in the front row or nearly front row. When she sang "Strawberry Wine" she had a line that went "Well I still remember, when 30 was old--" and I remember Bink snorting and saying "It is!" And at the time I thought "well how ridiculous, of course 30 is old. I'm 16 (or 17, somewhere in there) and I'm getting old myself!" Well I'm here to tell you something. 30 is old.
That may not mean much coming from a 30 year old who thought she was over the hill at 17, but I gotta tell ya...I'm old. Already I hear words on the television and I don't know what they mean, and I'm older than the Bachelorette and most of the Bachelors too, and every day I find myself more and more drawn to twangy country music. I make no apologies for my love of country music, but I used to at least preface my love with "But only MODERN, you know, not-twangy stuff." Nope. Love me some twang. And the stuff that was MODERN in 1995.
I got to thinking about all this today when I was convinced by my hair girl (31) and my friend Katie (30) that it was okay for me to have one of those feathers in my hair like I've seen on little 12 year olds lately who turn out to be 18. And I then I spent the rest of the afternoon keeping my head turned just so, so no one would notice it.
The other day my dad said something about it being difficult to just stop and appreciate the place you are in NOW, and not wish for yesteryear or dream about when the kids are a little older and you can take them to a movie, or better yet, LEAVE them and go to a movie, etc. I think I am appreciating where I am now, but it's only because of where I've been. I loved elementary school. I loved high school (mostly.) Man college was FUN and I didn't even know it. Being a newlywed with a full time job and all the time in the world to go to the gym and take weekend trips was awesome. And life with Charlotte was so RICH and precious and short. I knew it was going to be short. I knew one day I would be starting again at motherhood with kids who didn't go to the doctor every week and could crawl and walk and throw things in the toilet. When Ella came I knew those days were beginning and I was apprehensive. Then in a whirlwind, Charlotte was gone, Ava was here and I was expecting Lily. I really didn't know what would happen with Lily. I thought she might stay for a long time, and I really did hope she would. Because the stress level is so much lower with non-medically fragile kids, but I was so GOOD at special needs parenting. I felt like I was doing a great job with Charlotte, and I giving her all I could, and making her life as best it could be, and I knew she was happy. I wanted that again. Parenting Ella and Ava is absolutely delightful. They are so fun and smart and hilarious. But Ella runs away from me in Costco and smacks her sister and refuses to potty train, and I don't know what I'm doing. No one tells me I'm so strong or so brave when I'm counting to three as Ella streaks away from me in a parking lot with her pants falling down. And I see a black woman in a store and my heart just aches if she doesn't smile at Ava and I. I duck my head if Ava's hair isn't freshly done. I don't know what to say or do when a family glares at mine at a restaurant in Vegas, because, presumably, we are all painfully, shockingly white and Ava is black and should be heir to a rich, strong culture that I can't give her.
Charlotte left. Lily left. Without some major interventions from above (and don't get me wrong, there have been many of those) I will never be a special needs parent again. I'm a bumbling, old, white mom who can't control her toddler, corn row her baby's hair or respond like an appropriate mama bear when I should.
I will learn.
Someday I will look back and wish for my tiny tots who squawk and push and refuse to get dressed and roll away and pee before I can a diaper on. Someday I will whine at my kids and beg for a hug and a snuggle when all they want to do now is drool on me and fight for a spot on my lap. And someday I will smile at that 30 year old who was afraid, and old, and tired, and yes, very, very happy, but not yet grown up enough not to put a feather in her hair.