She really amazes me

This week has been very interesting:
First, the AAC specialist told me that an IPad had been approved for Sophia as well as a communication app. I am so happy and excited and also very grateful. I know that very often parents have to fight the school to get what their child needs, things like more therapy hours or a 1 on 1, let alone a communication device. We have been very lucky from the very beginning, Sophia's teacher adores her and she is always looking for new ideas to help Sophia progress. Not only the school gave us a 1 on 1 for Sophia, but they found the best one!! Lauren knows Sophia's body language and genuinely loves her and I know the feeling is mutual. I have great communication with the two of them and we are all on the same page as far as what we want  for Sophia. We are definitely lucky.

Second, Sophia has had a lot of progress in her motor skills. She is behaving like a kid her developmental age would. She is very curious and likes to explore around (usually where she is not supposed to explore, lol), she is pulling herself up to the standing position again which is awesome because she had stopped doing that after the first time she got dehydrated and was admitted to the hospital back in October. She is also back on trying to go up the stairs by herself, it's so exciting to see her cruising along the couch and then reach for the coffee table and then back to the couch, all by herself!!

And third, Sophia is really looking for interaction with others, with me, with her daddy and with her classmates, which is great because usually she is the one initiating the interaction, that is going to be key for her when she uses the IPad because she has the motivation to communicate. We are not sure when the IPad is going to be available for Sophia, hopefully this week or the next one. In the meantime, we are using two buttons that record sounds for 10 seconds. One says "ALL DONE" and the others says "MORE" just like on the IPad:
We are using these during meal time for now, the idea is to use them while playing too. When she masters these, we can add more buttons. We are going to let Sophia take the lead and she'll show us when she is ready for more.

The description of this blog is: "A peek into the unique world of the girl that amazes me everyday." That has never been more true than these last few days. Sophia amazes me everyday.

5 years ago...

5 years ago I learned the baby I was expecting to be born soon, was going to be a special one. I had only 27 days to go through all the stages (denial, anger, sadness, fear, acceptance) because once she was born, I needed to put that aside to take care of her. Some bloggers and special needs moms have written about what it is like to know that you are having a special needs baby     ( Welcome to Holland - Our Kids, or my favorite one: Amsterdam International -Dana Nieder). It is very difficult to explain and these two descriptions are right on and I don't really have anything to add. If you read them, you may feel compassion and try to understand (and I appreciate that) but you need to be a special needs parent to fully get it.

 Every case is different: some parents (like me) learn about their child before he/she is born; others have a "typical" baby and then something happens along the way; some have a child with a common diagnosis and know more or less what to expect, others have a baby with a brand new diagnosis and everything is new not only for the family but for doctors, too. Others will never know what exactly is making their baby "special". Either way, every parent goes through the stages, some take longer than others but we all face them sooner or later.

Me? (chuckle) Like I said before, when Sophia was born I was too busy trying to take care of her and  kind of ignored my feeling. She was my priority. She still is but, I learned I had to face the stages and take care of me to really take care of her. I went from the "why me? why my baby?" and the "I don't want to go to my friend's typical child's birthday party" and the "Is she ever going to be able to walk/talk?" and also the " why is she sick again?" to the "She is progressing every day" and "She is doing amazingly well" and everything in between. And in days like today, when I am getting ready for Sophia's 5th birthday, I think about what it would have been like to prepare a party for a typical 5 year old. I wonder if life would have been easier or better if Sophia was a typical kid and you know what? I think it would be different, but not better or worse, easier or harder, just its own different set of challenges. Being a parent is always a challenge.

 I can safely say that I am in the acceptance stage now and I am able to enjoy Sophia just the way she is. I go back to all the stages every now and then and I think I will always will but, I can now move on faster than in the beginning and go back to the present. Because it does get easier as time goes by, and by "easier" I mean that you learn how to deal with your situation in a better way. You learn to see things with different eyes and see past the "differences" and really see your special baby for what she really is: the most precious thing in the whole wide world.

Small steps

In the last post I talked about Sophia's communication progress, which continues to amaze me. Today I 'm going to talk about her physical development. Since there's no literature about Sophia's chromosomal disorder, we don't know how far she is going to be able to go. She was born with very low tone muscle so it was hard to know if she was going to sit up (she did!), or kneel to play (she does!),  or pull herself up, (she does!), or if she is going to walk without assistance (almost there!!!)

Sophia has made a slow but steady progress except when she had hip surgeries which have set her back. Two surgeries so far and after each one, she is in a cast for about 4 week and then she wears a brace for another 4. Then, my little girl has to work hard to get back to where she was before the surgery and then she goes a little farther.

Right know she is doing amazing! She is cruising a lot and she is getting more balanced each day. She is using her walker at school and walking holding my hand or the furniture at home. It is so great to see that she wants to get going, she wants to do it, and that is really important. This past weekend she decided she wanted to try going up the stairs and the look on her face when she got to the stair landing was priceless! She was so proud of herself! She climbs the step to get in the living room, or at school she actually climbed into the toy crib to play with the baby dolls (I would've done anything to see that). I am so proud of my girl!

She is doing so well and progressing every day that I am really bummed that her orthopedist told us she needs yet another hip surgery. It seems like the other two didn't work and the ligaments are stretched out and her hip is dislocated again. There are several reasons why I don't want more surgeries:
1. Two surgeries so far, how am I going to know that this one is going to work?
2. I don't want another set back. Not now when she is so mobile and has the drive and desire to walk.
3. She is going to be so heavy in the cast that I don't know how I am going to carry her or hold her if she is upset and needs comfort.
4. She has gotten so used to playing with whatever she wants whenever she wants and I fear that she is going to get so frustrated from being stuck in that cast.
OK, these reasons, while annoying and frustrating, they are doable, right? But this brings me to the final and most important reason:
5. Every time Sophia has a surgery, she has to spend about a week in the hospital due to complications with nausea and oxygen. It seems like the older she is the sicker she gets and the longer it takes her to recover.

I am really puzzled here. If she really needs this surgery so she can continue to make her progress I guess we have to do it but, how is this surgery going to do what the other two didn't? What if it doesn't work? I don't want Sophia to go through all that if it's not going to fix the problem for good. I don't want to see her like this again:

Am I being unreasonable? I am really scared because she is bigger and older and I fear that she is going to get sicker this time, this is major surgery! She would be under the anesthesia for over an hour and the chances that she ends up in the ICU are pretty good. I mean, isn't it all about weighing the benefits and the risks?

One thing I know. As Sophia's parents, Eric and I would make the decision that's best for our daughter like we always do.

In search of the one.

The one communication device for Sophia, that is. About three weeks ago, a clinician from Augmentative and Alternative Communication Services came to our house to do an evaluation on Sophia to see if and which device is appropriate for her. I liked her, not only because she said nice things about Sophia (wink) but because I could tell she knows what she is talking about and she was really paying attention to Sophia's interests and likes. The clinician told me that Sophia was very high on the communication scale, meaning that she is finding ways to let us know when she wants help, wants to play, or when she is tired of an activity or feeling sick. She does it by getting our attention making different sounds or by grabbing our hand to show us what she wants. She has also shown frustration when I can't understand her, which is great! Not the frustration part of course, but the fact that she knows the need to make herself understood.

The clinician used an app for IPad  (similar to the one I won) but the buttons are too small for Sophia and it was hard for her to see or to push since she tends to use her whole hand and and not just her index finger. This lady has been going to the school for a couple of hours each week to continue with the evaluation and I got her report yesterday. I can't be any prouder of my little girl! The clinician is using bigger buttons so Sophia can push them with her hand. Sophia pushed the "MORE" button independently several times to let them know that she wanted to continue with the activity they were working on! She seems to understands that if she wants more of something she needs to push the button, that tells us that over time, she should be able to use more buttons of symbols to communicate with us! (I am so freaking happy right now!)

The evaluation is not finished yet. Now the whole team needs to agree in which app or device is the best for Sophia and when they do, the school will get it for her. This will open a whole new world for us. I am so excited to know what is in that little head of hers. I can't wait to hear the first "mama" even if it is with a computerized voice! Whoa! Let's not get ahead of ourselves here! But then again...why not?

Thinking... Planning...

First I would like to say that this post is not with the intention to make you feel sad or make you feel sorry for me. I started this blog because I wanted to talk about raising Sophia and while there are a lot of good stories there are also some not so good ones and I want to be honest and talk about them both.

Every once in a while (ok, very often) I think about what Sophia's future is going to be like, and I'm not just talking about whether she is going to be able to talk with or without a communication devise  or walk without a walker, or be potty trained. I am talking about when she is not a little baby anymore but an adult... an adult with special needs.
Right now things are "easy" in the sense that she is a very happy girl, she is so fun to be with, so fun to work with. Everybody loves her: her 1 on 1, her teachers, her classmates, her classmates' parents, her doctors, even at the mall people can't help but smile when they look at her. You think about Sophia and you smile, come on, you try it! See? But, what's going to happen when she's not that cute anymore? What's going to happen when we are not around anymore? Where is she going to live? Who is going to make sure she is eating good? What's going to happen when she is not that fun to work with?

I know that even parents of typical children worry about their children's future and they hope that their children find a good partner and a good job and have a good life. But for me it's a totally different level of worry. Right now, Eric and I are working on setting a will and a trust for Sophia, it's a lot of paperwork, a lot planning, many important decisions to make and a lot of money to make sure our daughter is taken care of when we are gone. This is the easy part though, the hard part is to think about the kind of life she is going to have and the challenges she is going to face.

 I know that there are assisted living facilities where she can get somebody to look over her (which scares the crap out of me), and I worry not only about who is going to do it but are they going to do it with love? I worry not only about who is going to change her diapers if she is not potty trained but, are they going to be compassionate about it? I worry not only about who is going to feed her if she still can't do it herself but, are they going to be patient? Are they going to do it with love? And when she can't communicate her needs or wishes, are they going to try to figure out what the problem is patiently? With love? Pretty tough questions!

I could drive myself crazy if I focus only on the "what ifs?", so whenever I see myself going on that direction I try to think about the good life she is having right now and, I think about all the love she is getting and how happy she makes us. I also think about my responsibility to make sure that she reaches her potential. It's on me. I need to work on making her as independent as possible. It's on me to make sure I do everything I can to give her a very good life while I 'm here and to be as prepared as possible for her future.


Today I decided to go to bed thinking about the great day we spent together, take a look:

Hi, I am Sophia's mother.

Sure, my name is Natalia Frost, but ever since my daughter came to my life I am Sophia's mom. That's who I am. I know what you are thinking. You are thinking that I should not forget about myself, about my marriage, that Sophia can't absorb all of me, that I need something else to keep me sane. But you see, being Sophia's mom has given me an identity, my identity. Before she was born, I didn't know who I was, what I was capable of, how strong I could be, or how much love I was able to give.
It is true that being Sophia's mom has been the most challenging thing I have ever done, and the challenge does not get any smaller as time passes by. I remember a few weeks after Sophia was born, her geneticist asked me if I wanted to talk to someone, a therapist or counselor. I told her no, "I have this little human being who depends on me and she needs me right now, I don't have time to talk about myself." Time passed by and in every one of her 5 years of life, we have had to endure very difficult times, surgeries, evaluations, leg braces, hospitalizations, hearing aids, tons of doctors appointments, more hospitalizations and more surgeries. So yes, I kind of haven't had time to think about myself but please don't feel bad for me. I have grown personally, I am a better person because of Sophia. I am strong.
Now, that doesn't mean I don't suffer, cry (a lot) and ask myself "why me?" a thousand times. I understand that I need to take care of myself so I can take care of Sophia. In fact I am doing just that right now, writing about my story is very helpful. I am also in the process of getting a counselor to talk about things that are just too difficult to ignore. I am working on that so I can do my job as Sophia's mom better, so I can help her, so I can invest my energy and figure out what's better for her and how she can reach her full potential, to be a better Sophia's mom.

I need you to know that I am not one to say that I am happy to have a special needs kid, that I wouldn't have it any other way, that I am glad I had to walk this path, no, I am not happy that Sophia has to try really hard to do what comes really easy to typical kids. I am not happy that because of her condition every time she gets sick with a stomach virus or has a routine surgery, it takes her double the time to recover. I wish things were easier for her, for me, for us. But I am happy that I got to be her mom, Sophia is the coolest kid I know! She is a lot of fun to be with, she makes me laugh and when she is not sick she is the happiest kid ever. I feel so proud every time I get recognized at school and people say that my daughter is the sweetest girl and that they love working with her. Yes, I am  SOPHIA"S MOTHER, that's who I am, and I love it!