My Busy Preschooler

I can't believe my baby has started preschool! It has been so exciting to see her blossom. That is after a few weeks of nervousness about staying there. On the first day, she posed for pictures outside the house...

And in front of the classroom door...

Then she started to get worried as soon as we got inside. The first day went pretty well - neither of us cried so I thought we were doing good. Then the second day came two days later. She cried for an hour. Until another child observed, "I can't hear the story!" Then just as suddenly as she started, she stopped. Hmmm. After that, the crying became shorter and shorter each day with her announcing midday, "I was sad but now I am happy!" This turned into "I was all smiles today." And now, "I'm fine mommy. I didn't cry at all!" Yeah!

She is learning so much - some days I can almost see the smoke coming out of her ears! In just a month and a half, she is "reading" and "writing" letters, drawing a lot, counting on her fingers, talking more and more sophisticated, and being helpful. This is of course amidst the other, general 3.5 year old behavior that is best described in the book, Your Three Year Old - Friend or Enemy; sassy, bossy, whiny. Lovely! However, she remains generally sweet with her sister and quite entertaining for all of us. My other favorite book right now is a children's book by Nort*on Ju*ster - Sweetiepie or Sourpuss. To paraphrase, I wonder who it will be tomorrow and what tomorrow will bring...

look how far we've come...

I have been thinking a lot lately about one year ago - at this time a year ago, we had been through the most difficult of the ultrasounds in which we were given so many scary possibilities - that was June 2009. We had been through the MRI and met with the neurosurgeon - that was the end of August 2009. And then we turned our focus on trying not to worry and just preparing for L*ily to come. As I watched a coworker go through a "normal pregnancy" this summer, I re-lived the "fun" stuff about a normal pregnancy - I actually even missed some of it. You know the swollen ankles, the swollen belly, the sleepless nights (which I still have some of now!), the moving belly, the talk about labor and delivery, drugs or no drugs, hospitals - this one can really take me right back there, all I have to do is close my eyes and I'm there. It has been so interesting because while I re-live this, L*ily keeps changing and changing. She now sits like she has known how for so long (I guess 6 weeks is long when you are less than a year), and while still so sweet she has also moved into being quite coy lately. Tonight despite my ongoing efforts to teach her a nice, gentle sign for "more" she just banged on her tray... Loudly! She has a great deal to say - lots of dadadadadadadada. And while she has loved Z for a long time, she lights up in a new way when she sees her now. She is a gazer - she grabs you with her eyes and somehow "wills" you to look at her. She would win any staring contest. Z has become more fascinated with L too and is enjoying her company more as L responds so much to Z.

L is not crawling yet but can pull her tummy off the ground and rock and can also scoot backward from one end of the room to another. We had our first taste of grabbing toys the other day when Z stepped out of the room and L took Z's luvy - the worst thing to grab! So I'm sorry to be such an infrequent blogger but keeping up and soaking it all in and thinking it all through amidst the daily grind can be just about all I can do with my thoughts some days as I live. Oh what a crazy, ugly, emotional, beautiful ride this has been.

Oh and the neurosurgeon - we went back to see him for a follow up to L's 4 post-birth head ultrasounds to see if we need to keep checking in on her brain - this was at the recommendation of our pediatrician who said, "Go back to him so you can get his blessing and be done with this because I think you don't need to worry about this anymore." So, Dr. Neurosurgeon responded to that by literally "blessing" L*ily and then told us that many people function well with enlarged ventricles while many with normal ventricles don't (he said those are the people running our government!). We go see the pediatric cardiologist, audiologist, and ENT in October for check ups so I hope they know how to "bless" too. Like I said, crazy, ugly, emotional, beautiful ride.

Recent Visit from Uncle M*ark

L*ily and Z*oe's uncle was just here from B*oston and we have not seen him since Chr*istmas. He was here for a week - Z talked about it a lot before and since the visit. She can tell you he lives in B*oston and has to take an airplane to get here. We had a wonderful family dinner together (I'm not sure we had all been in the same place at the same time since his last visit!), the girls got to see him the day they were at Gma K's, and then he came over the day he left when I was home with all three girls. He gave them beautiful books,

read them to the girls,

and Z got to have uncle M put her down for her nap twice. She was so excited to see him that for days before he came she said, "When I see him I will hug him!" Needless to say he got kisses too.

He also got to spend some time with L*ily who he had only seen at Ch*ristmas. She gave him a good stare as only L*ily can do and then rounded it out with pulling on facial hair and giving coy little grins to him throughout our family dinner.

Boy, we sure miss our Uncle Ma*rk around here.

9 months!

Nine months ago today L*ily made her grand entrance into the world. L*ily, we have now known you outside the womb longer than inside.

At 9 months, you are just beginning to sit on your own.

At 9 months, you smile with your whole face or even your whole body. You light up when I walk into the room and I can't help but smile, happy that you are happy.

At 9 months, you can down a jar of baby food faster than we can eat our dinner and gum your puffs and biscuit with a little help.

At 9 months, you shout when you are excited or want something and I smile knowing it means you will talk someday.

At 9 months, you have become coy, tipping your head side to side and smiling.

At 9 months, you are just under 16 lbs of squeezable baby with dimpled knees and a little roll on your arms.

I have to pinch myself when I think about where we were at a year ago - so many fears, so many unknowns.

You have changed us, L*ily - changed how we see others, the world, ourselves.

Happy 9 month birthday to the most beautiful L*ily I have ever met. I am honored to be your mommy.

Good Eater!

When I look at these pictures, it is hard to believe that this is the same baby that struggled to eat 40 cc's of milk in the hospital and that was days away from a feeding tube after 3 weeks of struggles with eating.

L started cereal at 6 months... (sorry I didn't turn these pics)

She started well, although she didn't open very wide and her tongue got in the way a lot. Then we graduated to a big open mouth but I could still get a couple of my own bites in (of my own food) in between hers. Now L downs a jar of baby food like nobody's business and I can't take any breaks - if I do, she squaks and sits with her mouth wide open. What an amazing process this feeding thing is, and what an amazing child! (BTW, do you see those nice little rolls on her biceps???) So fabulous!

Zo*e's Birthday

Yes, I am finally posting these pictures. They were on my parent's camera, so it took time to get them to me and then it took me lots of time to get them to you. Still, they are adorable. It was a perfect day - and it was Pe*eps season (this tells you how long ago it was!); hence, the cake. Since then, Z is more and more of a preschooler and less and less of a toddler. Our pediatrician told me at her 3 year check that I should savor this year because it will be the last year where I will see remnants of my baby - she said by 4, she is all girl and no baby! Yikes!

Beautiful child

Here she is - if you have not yet met my sweet L*ily, this is her! At 7 months, she is more fun each day. Smiling, cooing, blowing raspberries (this is a nice way of saying she is spitting at you and I have told her that this is the only time in life that she can get away with this!). She even blew raspberries while eating peas tonight and we thought it was cute... PEAS!

The irony of this set of pictures is that we took them the day D*ave lost his job. It was a difficult day at best and yet these pictures remind us of the important things in life and the blessings we do have. Thank you little one for putting that in perspective!

Whirlwind Days

The last month or so has been a whirlwind for our family. This is my latest excuse for why you have not heard much from us here. So, grab a cup of coffee if you want to catch up - there is so much to say!
Mar*ch 14: L*ily's dedication
Mar*ch 17: St. Patty's day of course!
Apr*il 2: Li*ly's ultrasound
Apr*il 4: Z*oe's birthday and E*aster
Apr*il 11: Z*oe's party

And amidst it all, Z*oe's allergies and eczema acted up, my mo*m went on a much needed vacation so we juggled child care, oh and J*en got strep throat! And we went to the Regional Conference for the D*own's Syndrome Association. And of course the daffodils and tulips bloomed in our yard! Ah, spring!

I am still working on the party pictures so check back soon. First I have felt the need to share some thoughts from my heart - and put into words more eloquently that I could do myself. So that's next!

Thoughts on L*ily

As you may imagine, I have had so many thoughts and emotions running in and out of my head and heart over the last several months - many of which I cannot put into words. There is a lot of weird things that happen when you face a crisis or more specifically when your reality changes dramatically. We never know what the future holds for ourselves much less for our children, but it feels more confining and sometimes less hopeful or more complicated and hard when you have a child with special needs. For L*ily, the future is undefined just like it is for Z*oe, but it feels like the box she has been given is smaller or as if someone has already determined what it will look like. Some of this is in my head of course - I have really heard nothing but encouragement from almost everyone I have encountered since learning of L*ily's diagnosis, but I struggle back and forth at times with being hopeful because I need to and she deserves it, but trying to keep a foot or maybe just a toe in reality - whatever that may mean. Everytime some stranger comments about her adorable tongue, I want to say - well, it sticks out so much because of her Down's Syndrome. Or when someone tells me that kids with Down's are always happy and I think about how no one is always happy and she should be allowed to feel something other than happy sometimes and that's okay. Then I remind myself that this is not what people mean or they just mean well, or D*ave reminds me that I might be a little sensitive and I should give people a break. He's probably right. As I sat in the Down's Syndrome conference a week ago, I was overwhelmed yet appreciative of the information and support. But at times I admit I wish we were not in this group of "those families" - you know how you sometimes say things like that - well, now we are there. Living it.

A few people have forwarded me a blog of a woman who is a writer and has several thousand followers. She has an almost 3 year old girl and a 3 month old girl with Down's whose diagnosis, like L*ily's, was unknown to them. I don't know how to just link you there - maybe one of you can assist me for next time! Her blog is www.kellehampton.com. When I read her blog for the second time about a month ago, she had put into words my thoughts of what this all means and I cried - she gives permission to share from her site with credit to her, so I wanted to share this excerpt from her from Mar*ch 29 since I can't figure out how to get you there directly from here:

"I've been thinking about perfection lately. I've stared at Nella so many late nights and marveled at her perfection. Because she is...perfect. And I wonder what it is about different that makes us think it's not perfect? Why is it that we set the bar higher and higher and expect ourselves, our children to be flawless? What is it we strive for and once we reach it--this perfection--what have we acheived? It's never enough. Even the razor I used in the shower this morning tries to outdo itself with now six blades layered to give a more perfect shave because apparently the five-bladed prior model didn't quite master the hairless perfection we're attempting to achieve. It's just that I have learned so much about this perfection thing these past weeks, and I am finding myself cozily curling up with a new me. A me that has been cultivating for years, but is truly arriving to the place it's needed to be. The concept of perfect is not flawless or four-point-oh. It's happiness. Happiness with all its messiness and not-quite-there-ness. It's knowing that life is short, and the moments we choose to fill our cup with should be purposeful and colorful. And that's perfection. And our Nella--what the world may view far from perfection--has begun to teach me that."


This is where I (Jennifer) am at these days. My dear friend A*my, who has a son with special needs, shared some thoughts with me when we were in the hospital. I couldn't hear it then so much but I am reminded of it often. She told me that when you have a child with special needs, its not that you forget about it, but you begin to see your child and the diagnosis is just a part of who they are. L*ily is an amazing little girl who is lighting up our life in so many ways and some days that extra chromosome makes me mad, but most days its not in the forefront of my mind when I look at her - her beauty and her potential and all the ways she is defying odds and melting hearts already overshadow the diagnosis and whatever it means.

Easte*r

I have always loved E*aster - for the celebration of Christ's resurrection, but it also feels like the beginning of spring, especially when we have a late Ea*ster like this year. But of course, E*aster has new meaning for me in recent years. Z*oe was born the Wednesday before E*aster in 2007 - the night before M*aundy T*hursday, and we were discharged on G*ood F*riday, if you know your days surrounding E*aster. This year, Z*oe's birthday fell on Ea*ster. We celebrated by attending Grandma Kath*y and Grandpa St*eve's church also with D*ave's mom in the morning and having E*aster dinner and a very small celebration with the party planned for the following S*unday.

I decided that I am glad E*aster is a floating holiday and won't fall on her birthday every year - its a lot of candy and pomp and circumstance, but it is also special and we enjoyed it. I resisted the urge to buy matching E*aster dresses for my girls and went for individualism instead for two reasons - because it was Zo*e's birthday also and because they both had adorable dresses that I wanted to see them wear again.
Z*oe was so excited for her birthday - she had been asking about it for weeks and we had explained first that her birthday was in A*pril and then we started saying it was on A*pril 4. So when someone at my parent's church asked Z*oe about her birthday on E*aster, she said, "I will be 3 on A*pril 4th!" When we reminded her that it was A*pril 4, she just smiled and said, "Oh yeah. Its my birthday today!" Earlier in the morning, Da*ve brought her into the bathroom right after she woke up as I was in the shower and I sang "Happy Birthday" to her. I wish I could have captured the look on her face in more places than just my memory - I had forgotten how magical birthdays are when you are a child. Z*oe received a few gifts that day, and she was quite excited.
Grandma K*athy has been very into making her own cards (she made many V*alentines this year complete with paper doilies) and she made Z an adorable birthday card.
Grandma K and Grandpa S also gave her a horn and tassles for her bike with training wheels - she loves it!

Z got a waterproof baby for the bathtub from Grandma J*udy - Z firmly believes there is no such thing as too many babies at least for her, and she loves being able to take one in the tub every night.

And we can't forget PJs - something Z is very into these days. She would wear them all day if she could - maybe some of you can relate!

We ended our day with attending our own church's E*aster service for the first time - we meet in the evening and we have often gone elsewhere E*aster morning instead. It was lovely and unique as only H*ouse of M*ercy can do. All in all it was a great birthday and the best part for Z*oe was realizing she would be celebrating again soon!