“If ever there is tomorrow when we're not together.. there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart.. I'll always be with you.”
~A.A. Milne, from "Winnie the Pooh"

Sunday, April 29, 2012

Flashbacks

This week has been an interesting one for me......one that has seen me walking back through a whole lot of memories of the last almost 16 months, reviewing them all carefully and even shedding a tear or two.
Monday morning brought with it pictures of a brand new member of this little Ds club, which reminded me of that first moment I laid eyes on my own sweet girl. Happy memories of a tiny baby that I spent months dreaming of, worrying over, and impatiently waiting to kiss, finally snuggled in my arms like she'd been there all along. My princess. And looking at those pictures of baby Wes, I cried with happiness for his mama, knowing exactly how amazing this journey is going to be for her.
Monday morning also brought hours upon hours of conversation with God on behalf of a baby girl who has already been through a whole lot, one who was finally undergoing the surgery which would repair her broken heart. I find that with every prayer, I relive those scary, seemingly endless 15 days of our own hospital stay. In my mind, I walk back through the paralyzing fear, the helplessness, the uncertainty brought by hours of waiting, the tears, the smiles, the relief, the joy of finally having made it through to the other side. And as I prayed for Shilo's healing, for the end to this harrowing detour the Mann family has been forced to endure, I cried with empathy, knowing how it feels to stand in her mama's shoes, scared to death and ready to have it all behind you all at the same time.

These periods of trials and tribulations in our life seem like a lifetime ago on any usual day. My days are filled with a happy, smiling angel who laughs, who chatters away, who seems to learn something new with each new day's dawning. But in reality, the memories of two of the biggest, life changing events that have happened in my 34 years are always there, right below the surface, waiting to be revisited again and again. And it all just reinforces how very far we have come in what seems a relatively short time.


After all, it wasn't so long ago that Down syndrome was the very worst thing I could imagine for my unborn baby. Now I know that it's not. Instead, it has become something I am thankful for every day. It wasn't so long ago that I truly believed I wasn't cut out to be Lydia's mama. Now I know that it was what I was born to do. It wasn't so long ago that I thought that I wasn't nearly strong enough to make it through handing her over for open heart surgery. Now I know that there is more strength and faith in me than I could have ever dreamed. It wasn't that long ago that I thought that having this baby would be the end of my dreams. Little did I know that those dreams are bigger now than they ever were before, and that she would be more of an inspiration for achieving those dreams than anything or anyone else in my life before. It wasn't so long ago that my worries were that she wouldn't walk, she wouldn't talk, that she's never reach a time when she could be completely independent. HA.



 While I can't foresee what the future may have in store, I know that, judging by the past, we have a lot more surprises in store for us. And no matter how hard it sometimes is (and what an emotional endeavor as well) to walk back through all the emotions of days gone by, I find it is therapeutic. The heart wrenching pain of those first dark days fades away a little more with each passing day and although I hope that I never truly forget what it feels like to stand in the shoes of someone facing the journey we have traveled so far, I look forward to the day that the sting is not so sharp and the tears are not so near the surface. 
Looking at this face


makes it pretty easy to forget all of the doubts and all of the fears.

Saturday, April 21, 2012

Winding Down....


 Another semester of school is drawing to a close. The final class is now just two short weeks away, followed shortly by graduation (YIPPEE!) and then a blissful almost 4 months of school free living before (hopefully) the rest of the path to realizing my true goal begins. The applications have long been turned in, the grades and tests necessary for admittance submitted. Now my dreams are no longer in my hands...and its its own sort of Hell to be waiting to find out if those dreams will blossom to fruition or whither on the vine for yet another year. I have long felt that God called me to become a nurse and the time has come for me to fully trust that if that truly is His wish, He will open the doors necessary for me to become one. I put in the work (sometimes more than I thought myself capable of, amid a cacophony of distractions which could have fully excused my giving up....). The rest is in His hands, which is where I have tried to leave it......
The boys will be finishing school at the end of May...and at the beginning of June, we will all be heading south toward the sandy white beaches of Destin once again.


 John and I have been together several times (4 to be exact...almost once a year, with the exception of the summer I was pregnant) but this will be the first time we have taken either of our boys. I always feel more myself with sand in my toes, salt on my skin and the warm ocean breeze blowing my hair and I am looking forward to sharing that experience with ALL of my kids this time. Hoping that the Princess finds that she enjoys the beach more this year, post OHS, than she did last year...mainly because I am really longing for some time just laying on the beach, watching my babies frolic in the water. :)


 The plan is to stay in Destin for about 4 days, and then head across the state to the East coast for a 5 day visit with Dad and Diane......where most of our time will be spent lounging by his pool, I'm sure. All in all, I think that it will be an awesome family trip (except for the lonnnnnggg drives!), the longest we have taken together since John and I got married almost 3 years ago.
Liddy got her amazing butterfly standing braces this week.....which are already making a marked improvement in her standing skills.



 The first day she stood with assistance for almost 15 minutes straight, which is by far the longest (before we were lucky if she would stand for a minute!) time we have accomplished so far. I wonder on a regular basis nowadays if she will ever crawl..or if she'll just go straight to walking. She just doesn't seem to show a big interest in the crawling, since she can roll wherever she wants to go with much less effort. Either way, we're ready to move on...the path just isn't quite clear enough to see which way we'll be moving yet.


 We started speech therapy twice a month two weeks ago...and since Liddy has been going through some major separation anxiety over the last month or so, I was a nervous wreck about how adding someone new would work out. I had spent the two weeks prior doing the therapy with her, since she refused to let either of her two therapists touch her without having a major meltdown. Thankfully, at least for that first visit, the new therapist was willing to just let Liddy sit and play without trying to get her to do much, so it went much smoother than I had even thought to hope! We seem to finally be moving out of her fear of the other two, slowly, so hopefully that little phase is coming to an end (and maybe she'll start letting Grandma hold her when she's here again too!)



This month has been the month of appointments. We had a 15 month check up a couple of weeks ago, which I am beyond proud to say showed that little Miss Princess HAS been growing in length (an entire inch since the last time we got what I would call an "accurate" measurement) and she finally broke the 17 lb mark (weighing in at a whopping..haha...17.2 lbs). This past week was our followup with both cardio (for an echo to check her pulmonary hypertension) and with the pacemaker clinic (to check her pacemaker and make any adjustments necessary to its running). The echo (was not fun.....you try keeping an extremely active 15 month old still for over 30 minutes..which btw turned out to be actually more like 90!) showed that while the PH has decreased slightly, its still about 15 percent over what we want it to be. No intervention yet. We will recheck it in another 3 months and hope that its down to at least 30% then, which would be close enough to the 25% goal that hopefully we won't need to go back on medication for it. The pacemaker looked great...and doc says she should be good to go on that battery for about 3-4 more years, even though she's still using it all the time. We've moved on to phone in checks every 3 months now, instead of every month, which makes just one less appointment we have to deal with keeping track of!


 She now has two teeth..both of her top one year molars. She refuses to eat anything resembling baby food any more....and quite frankly refuses to eat anything that doesn't come from our plates, unless its something sweet, in which case she gladly makes exceptions. She's still hanging on with her 7 words that she uses regularly...but we are starting to hear her say a few more here and there. She learned that bouncing on the bed is quite fun and I seem to catch her, sitting up and bouncing on the bed after I have put her down for the night on a regular basis nowadays. Funny thing about that....at first she would clap when I caught her. But after I told her therapists that she was capable of transitioning from lying down to sitting on her own, she now won't look me in the eye when I catch her....like she thinks if she doesn't look at me, I'm not there, which cracks me up! Such a sassy one, this teeny girl, and that sassiness never ceases to make her mama smile (except when it morphs into pure toddler attitude instead ha!)


Looking forward to getting back into the blogging groove when the next two weeks are over! I have missed it...and I have missed all of your comments too (as well as reading YOUR blogs! I am so behind!!!)
  

Friday, April 6, 2012

15 Months...and a Photo Drop

Life has been so very busy....and this blog has been extremely neglected. I swear when I come I here wind whistling and mental tumbleweeds rolling across the plains of my mind. :) Quite honestly, I have so much on my plate for the rest of April that the lack of posts will probably continue until this semester is finally finished the first week of May!


But I digress.... Today sweet Bug turns 15 months old and later this month we will be officially 9 months post OHS. Its mind blowing to me that so much time has passed as in so many ways it seems like yesterday that we were waiting to have it all over with....
I haven't posted for a while about Liddy. She is doing amazing things! We finally got a tooth, one of her first year molars, which seems to baffle everyone except for some of the other mamas in my circle. She is also having a virtual explosion of language. She now says 7 words consistently....mama, dada, bubba, no, ball, bath and bubble, along with some that only make appearances occasionally.

video

She is working on standing...which seems to have put her focus on crawling well behind her. She just doesn't seem interested. Alas, it is what it is. She gets around quite well rolling and just doesn't seem to care about crawling.
No more baby food. She refuses to eat it any more. She wants what everyone else has...and frankly, who could blame her? We've moved on to sippy cups, although we are using the traditional type because she just doesn't get the other ones.
We also FINALLY got rid of the nasty sinus infection she has been fighting since the beginning of Feb. It took 4 (YES. 4!) rounds of antibiotics to shake it.
We will be adding speech to our therapies starting next week.
Now the pictures......

You think YOU have a bad case of bed head? lol

Doesn't everyone ride their ponies in a diaper?

I'm humoring you, mama.

Silly face

Serious face. Complete with pouty lip.

Braids!