This girl!

This girl!

Friday, March 20, 2015

Sophia is a veteran traveler.

Every year since Sophia turned one she and I  go to Colombia to visit my family and this year will be our fifth time. It's a lot work and a lot of planning, we set up appointments with all her doctors including a travel clinic doctor who gives us medication and vaccines. I got letters from her neurologist explaining why I need to have Sophia's seizure medication with me on the plane and also from her pediatrician saying that Sophia needs to get IV fluids should she vomit for more than 5 hours to avoid dehydration. I am taking the nebulizer with me just in case. We are spraying her clothes with a bug repellent (a really good one that last up to 6 washes!). I also have all kinds of ointments and lotions for anything and everything. I got traveler insurance just in case. Sophia has gotten sick almost every time we go down there and those experiences have taught me to be a little more prepared and if she gets sick this time (I really hope she doesn't), I feel like I have the support and the means to deal with it.

 Yes, it's a lot of work but it's all worth it! It's three weeks of being loved and taken care of by people that would do anything to compensate for our lack of time together. During those three weeks Sophia grows significantly, I don't know what it is but she always comes back doing something new and it's amazing. I get to recharge batteries, eat my favorite food, drink the best coffee in the world and dance salsa the way only Colombians know how. Sophia gets quality time with her cousins, uncles, aunt and grandparents. So yes, it's worth all the planing and preparation. I love my life here with my husband, my friends and Sophia's amazing teachers and doctors but my daughter and I need and deserve this.

We will miss daddy, of course, but he gets to eat whatever he wants during our absence, it's a win win!

Who wouldn't want to spend at least three weeks looking at this smile?

Friday, March 13, 2015

Little Miss Independent.

When we learned about Sophia's diagnosis (you can read about it here ), we faced a whole world of uncertainties. Not only the baby we were expecting had a syndrome but it was an unique one. Since there was no literature about it, we didn't (and still don't) know what to expect. We had no idea whether she was going to sit by herself but then one day she did. We didn't know if she was going to crawl on her knees and hands but then she did. Same thing with standing or pulling herself up, and each time it was more than just another milestone.
For most of families, the milestones their kids reach are expected to happen and when they do, it's of course a motive of celebration but then they get ready for the next one. There's nothing wrong with that, that's how I would probably be if my kid was a typical one. But Sophia is a very special kid who does things at her own pace, things are a little harder to do for her; but after three hip surgeries, having low muscle tone and having to wear braces to correct the unusual angle of her feet, I would say she is doing pretty darn good. Sophia works really hard to do the things that other kids do fairly easy so when she reaches her milestones it's a very, very big deal!
My girl is walking! with the help of a walker, yes but walking nevertheless! It is a dream come true and I am happy for myself because she is getting so big and heavy and it's hard to carry her all the time but I am mostly happy for her, her face lights up when she is walking, she realizes she can go places and she gets to be independent, she knows it and she likes it; who wouldn't?!
I don't know if Sophia is going to walk on her own without assistance but I'm not going to think about that because what I want to do right now is to enjoy this moment... every minute of it!

She lets go of the mirror for few seconds at a time

Friday, March 6, 2015

Sometimes you just want to cuddle... and that's ok.

Being a mom (or a parent, for that matter) is a full time job, let alone a special needs mom. Besides the regular duties, I am a physical and occupational therapist, a feeding specialist, a speech therapist and an advocate for my daughter. Don't get me wrong, I don't regret doing all those things for Sophia, I do it because I love her and I would do anything and everything to give her all the opportunities she needs to grow and reach her potential. But sometimes I find myself in constant working mode, thinking what I can do to help her, what cup or spoon should I buy to help her drink or eat on her own, what toys I can find to motivate her to isolate her index finger or how to organize the house so she can cruise around.
But sometimes I find it hard to allow myself to just sit back and spend and afternoon on the couch, just watching TV or cuddling with Sophia. I immediately start wondering if I should be teaching her something or working on her fine or gross motor skills instead of lying down. I guess I just feel guilty thinking that I'm not doing enough...
My wonderful husband said the other day that cuddling with my daughter is not one of the things I should feel guilty about, he said that I do exactly what Sophia needs and those cuddling moments are as important as the teaching ones. So I decided to believe him and give myself credit for what I do, I decided to enjoy the fact that Sophia loves sitting next to us and just be silly and giggle. Sometimes she crawls towards wherever I am sitting, asks me to pick her up so she can be next to me, then she grabs my hand and puts it on her arm so I can rub it, sometimes she just wants to hold hands and if she is happy doing just that, so am I.

She loves taking selfies.
Being silly with daddy.
Just chilling.
More selfies.