Monday, April 25, 2011

Renewing, Smiling, Laughing, Loving

After what was a really rough week for me, I have found myself very refreshed and renewed and ready to move on past the issues that took me away from where my focus should be, and always has been.

I am really a private person. The reason for starting Liviana's Journey in late 2007 was to keep family and friends up to date on what was going on with Liviana since we were moving out of state for her medical care and birth. It has ended up being a resource and a help to other CDH parents and now MLD parents. Completely unexpectedly it has touched many, many other people. I always insist I am not doing anything that any other parent would not do when faced with the same thing with their children. I am not special...I am just a mom.

I am actually an introvert, which would surprise a lot of people. When I was in graduate school I had to take many personality assessments, since I needed to understand the instruments we may use. I was always 50/50 Introvert/Extrovert. I think that was a result of where I was in my life at the time that I even was 50/50. I needed some extroversion to be attending and presenting at conferences, teaching classes and working in a team with other people. I have no doubt if I took the same assessments right now I would have shifted clearly to introvert, which is my natural comfort area. That does not mean I do not like people, or socializing or groups. It simply means that I don't get my energy from being with other people but rather can get that energy from being alone and solitary. I think little people are excluded...they give me energy no matter what.

So, when all of this drama happened I really wanted to just fold it all up. I will always do what I am doing, the way I am doing it for my children whether everyone can read about it or not. I just questioned whether I needed to sharing so much with everyone since it opens you up to so much judgement, scrutiny and really, just plain old gossip. I don't think anyone ever wants to be talked about in a negative and untrue light but in a situation where all you are doing is going day to day hanging onto what you have with your babies it makes it feel like you are being kicked while you are down. I never even wanted our story to be made "public". I never sought out news stories or anything makes me really uncomfortable. Good friends did what they could for us contacting those people because I never, ever would have and they were thinking more rationally about our needs than I was at the time. I appreciate all of them more than words could ever say and know they did what was best for us and our family...I don't ever want that to be misunderstood.

I am moving on now and going to return to what is important and what I have been focused on since the beginning.

I was so blessed to have met a local Milan woman, an American, married to an Italian man. We met on the expat board a couple of week ago when I was looking for help with Tarah's Visa issue. We got back in touch this weekend and they were so kind to invite all 7 of us over to her In-Laws house for Easter dinner. We were all like little kids, all giddy and excited that we would be going somewhere to be with other people for a traditional, Italian Easter. Michelle and her husband have a 3 year old son and the kids were so excited to have someone else to play with. It was really a wonderful, relaxing day focused on the family. It was something we all really, really needed. We are so grateful for the invite and for new friends. Almost all my socializing for the last 3 months has been with people in hospital masks. Even us introverts need to have a chance to spend time with other people. Thank you, thank you, thank you Michelle, Cristiano and family. You have given us so much more than you even know.

The "Easter Bunny" (AKA, Brad hunched over with a bad back) hid eggs in the courtyard early yesterday morning and the kids headed out for an egg hunt, complete with whatever basket like item they could find to carry their stash. I am sure the neighbors wondered what in the world we were doing out there. It reminded me of last years hunt and Liviana running around trying to collect eggs. It is hard to not reflect on the same time last year when everything was "normal". This year brought new, special joy though with all four together and lots and lots of smiles all around. Here are a few photos. I also have photos from our Easter dinner I will get posted soon too.

Today is still holiday and feels like a Sunday around here. It is referred to as Pasquette. The courtyard is a buzz of activity and you can smell BBQ grills going...a heavenly smell to us. It is going to be a good day.

Giovanni has a regular appointment tomorrow to check blood counts and Liviana will have a neurological evaluation because of her increasing muscle spasms. I will update when I can.


Dear6993 said...

You have got such a great attitude! Know that for each short-sided, narrow-minded, negative person making comments, there are millions of us that you inspire everyday! Thank you for sharing your story, for being honest and real, and for showing us what it means to go to the ends of the earth for the sake of FAMILY! God bless ALL of you!
Karen Dear - Elk River, MN

Anastasia said...

Your family's beauty just takes my breath away. I think of you every day!

Gr8Life said...

I wish I had your gift for photography you pictures are beautiful! I hope the kids appointments go well.
Have a Happy Little Easter

Judy D said...

So great to be part of something back here for you. Truly an honor.
Judy D.

Nellie said...

I had a child born with medical issues and I applude you for being resorseful and so giving in sharing your story with others who are possiably going thru the same ,there was no internet when my son was a baby, he is strong and handsome now , but what would I have given to know I was not alone with his particular problem.
May the Lord Bless you and your beautiful family, place your worries in Gods hands and he will give you the strength you need when you need it the most!He did for me!!I will be praying for you all.

Jenna said...

My name is Jenna and I came across your site. U are a wonderful, caring, kind, amazing, and inspiring person and mom. Your kids are brave, courageous, determined, fighters. They are strong and inspirational hero's! U and your kids will be in my thoughts. I have a rare life threatening disease, 12 other medical conditions, disabilities, and developmental delays.

Anonymous said...

I just started reading your blog because it was linked to another blog I follow. I read all the way back from November of last year and my heart aches for you, your husband, Tarah and all of your children. I have a 3yr old and to imagine him all of a sudden not being "him" anymore is unthinkable. My reason for posting though is to mention something that might help Liviana. I don't know if they sell epsom salt there, but you could add it to her baths and the magnesium could help her that way with the constipation. It also could help to relax her. My friend (who is very holistic) uses it for her son and it has really helped his bowel issues along with some focus/attention issues (possibly the sulfur) he has.

Nicole said...

It has almost been a month since you posted, I hope all is going well!