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!

Li*ly's recent Ultrasound

Li*ly had another ultrasound in which they are checking on the size of the ventricles in the mid section of her brain. They are doing ultrasound instead of a Cat-Scan or MRI because they can still look through her soft spot until it closes (it closes completely somewhere around 18 months). Amazing! Again, this was the major concern during pregnancy (NOT Dow*n's Syndrome). The ventricles had decreased in size dramatically from in utero at birth and then were slightly enlarged in Januar*y, so she was rescanned again in Feb and again on Apri*l 2. We are praising God that there again appears to be no change (this was the result in Feb too). L*ily goes in next week to her pediatrician for her 6 month check, so we will find out then what happens next. I decided this time to bring a camera - and Da*ve was able to come too - but then of course we forgot the camera. T*im, our ultrasound tech, was kind enough to let us use his IPh*one and emailed the pictures to us. You can see that L*ily does not seem to mind! Thanks Tim, where ever you are!

St P*atrick's Day Fun

I have always been fond of this day - long before I knew I was Iri*sh and long before I could claim the holiday as "J*en P*atrick Day". This year, my sister and I took the girls to the parade in downtown St. P*aul. We also saw some I*rish dancing and made I*rish charm bracelets. I snapped a few shots to confirm for you how crazy the I*rish in St. P*aul really are. (Does anyone remember former MN Go*vernor Je*sse Ven*tura's comment on D*avid Lett*erman telling the world that the St P*aul streets were designed by drunken I*rishm*an?!?)

L*ily's Dedication

On Ma*rch 14, Lil*y was dedicated at our church, H*ouse of M*ercy. At our church, this celebration includes D*ave and me washing her feet as a symbol of our service in love for her. It was a very emotional day for us - another milestone that we could not envision a few months ago. It was emotional for us when we did this for Z too because it is a culmination of our beliefs that G*od lends us these children - they are no our possessions but a gift from G*od - a gift that we are "borrowing" and a gift that we have been entrusted with to raise them in the best way we can. This ceremony was intense for us as we realized that there was a time not so long ago when we did not dare think this far ahead - when we couldn't think this far ahead because the road was too unknown, too scary, when we were just trying to get to the next curve in the road or even just the next mile marker and could not think of what came next.

The intensity of the moments during the dedication was interrupted a bit by a lovely almost 3 year old who had only stood on stage once before and who did not see her dear cousin, A*ugust, in the second row until after we were on stage - in the haste of the day and the preoccupation of the ceremony, we had failed to explain to her that her cousin would be there beckoning her to respond to her adorable "Hi Z*0e!"
All of Li*ly's grandmas and grandpas were there - Grandma and Grandpa S*undseth were kind enough to be our photographers for the evening so unfortunately, we didn't turn the lens around on them. This is Da*ve's mom, and then from left to right, D*ave's step mom, dad, and our dear friend B*elinda who takes care of L*ily one day a week. (I don't know who that guy is behind them, but he sure thinks Li*ly is cute too!)