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Saturday, April 30, 2016

Living in fear.


Most of the times I feel that being a mother of Children with Sickle Cell Anemia is like living in fear. And it feels this way because this disorder is very unpredictable, pretty much no matter what you do to stay healthy, anything can trigger a minor or major crisis. Since environmental changes, to weather, mood, stress, sadness, excitement, happiness... And the list goes on and on.
We've been very fortunate, despite all. Most children living with SCD that is my children's age have been through more hospital stays than the numbers of months of life they have. Maybe this is because we chose to fight for what we feel is right for our children now and in a long way. My only regret is sometimes taking longer to move forward and fight with all we have on hands to get where we need to be. 
It saddens me to see and read how much struggles many families goes through  every day, and still not many people know or care about this Disorder that is considered the Second major hereditary Disorder existent.
There is just so much misunderstanding, judgment and mostly discrimination against it. I still remember the first time we went to a Hematology Clinic and both the doctor and the Social Worker telling me: "You know,  Sickle Cell Disease is a black disease!"
At that time everything was so hard and confuse in my mind, my heart was heavy and I didn't realize how bad those words were and there was a discrimination profiling.
It is hard to put into words how much you need to be strong and have faith that God empowers us to go through each day.
You have to be in a nonstop search. And yet deal with the fears of the unknown and the guilty of passing it to your most loved ones.
Most of the times it feels like you are constantly walking on egg shells.

Wednesday, April 27, 2016

So proud of myself!

2016

So proud of myself.... After a quite long time doing little to none physical activities just finished a 30 days challenge.smile emoticon

I did tried it 3 years ago, when life was less chaos, and I was in the best shape of my life but fell out of the wagon one week before it end. This time, I went through it all. Missed one day, but never stopped. Some days my weight were Helen, lol! ‪#‎25pounds‬
She wanted to be on my arms, then I used her as my weight.
I used to do the same 6 years ago when my fitness journey started. Now I was inspired to get back by my children: 7 and 6 years old!
smile emoticon


2013

Monday, April 25, 2016

Quality time with my Boy!

Most of the times I get to spend alone time with my children I like to do something that will be both, fun and educational. Giving my son's needs I usually spend time doing some reading and writing works, but this time, after we were done with our "serious" playing I decided to do something different than just let him watch something on my computer.
He doesn't have much patience and can get bored easily, but I was able to take him into drawing a Spring scene.
I just loved the way we had fun and not only he enjoyed it, but it came out pretty neat. And as a good brother, he asked me to make him and his middle sister in our picture!
#MeltsMyHeart
#Spring
#Siblings

Friday, April 15, 2016

Everyone has its own gift.


Being a parent of multiple children, as pretty much anything in life comes with lots of discovering and adapting.
As human beings, we have this habit of always comparing ourselves. Sometimes it might feel like anything we are, have or do are not enough, because someone is better. And on this way of trying to match and being like, we get lost and forget to appreciate what we are.
It is common to compare our children among them and try to fit them in the what to expect guides of parenthood.
I remember when I got pregnant with my son, I already had a little experience with babies and children, since I am the first born of  a big family and grew up around many babies and little ones, but I wanted to learn more, besides, it would be my own child. Then I came across this article, where a child development specialist said that the worse mistake a new parent do is trying to believe those New Parents guides book are the manual for raising your child.
True enough. My son was a really mature baby, and despite being ahead development-wise, even though he was born with Sickle Cell Anemia, he wasn't speaking words probably until he was 2. I remember mentioning it on his 18months well visit, and his doctor telling me that it was fine for him not saying words, because he could understand and follow directions, he was in a multilanguage environment, and the doctor added, "I don't know any 18months old that understand music as your son" ;).https://www.youtube.com/watch?v=4ajuGh5-gE8&feature=youtube_gdata_player
True enough. My son was very young and we could see how into the music he was. He couldn't even stand yet, but he knew what he wanted and would be fussy until we put music for him. As soon as he could sit and stand up on his own, he loved to watch and imitate the conductors in the orchestra.

Tuesday, April 12, 2016

Having a special need child... My take on the Poem "Welcome to Holland"


Recently I was introduced to the text "Welcome to Holland.", and as I was reading it I couldn't help myself but get back to the time when my son was diagnosed with Sickle Cell Anemia through his Newborn Screen. Each paragraph could make me go back and revive since the first call from the Pediatrician asking if I knew of anyone in the family having it. In fact, now reading the text it makes me feel just s if the pilot was announcing the need to land somewhere else...
Yes, this text can illustrate exactly what life turned to be after the first appointment we had with a Hematologist. I was prepared and was for sure ready to have a child... Then there was a new piece that I knew nothing about but I decided to learn about it.
The guidelines for this new world made me cry and many times question "why". 
I was scared and felt alone. And now when I think back it hurts knowing that I didn't enjoy each moment as I wished because of the fears.
At some point, I felt as I should stop looking for answers and knowledge about my new world. And I decided just enjoy motherhood even having this voice inside saying to be aware.
I internalized my fears and feelings about it and now I realized that if I had looked for ways to accept it and walk through, it wouldn't take me this deep. 
It is hard to know or see, but I have been dealing with depression and lots of anger and anxiety since them.
Even though, I am blessed that I can find ways to keep my mind from taking me to the dark side. And among many ways, I found that reading and listening to others experience helps me cope with my fear. 
There is a saying that goes like this: "Those who spending time giving their shoulders for others to cry, have no time to cry for themselves", and I believe it is true, at least for me. I think this Poem is very special and very touching, and I would really recommend that everyone, specially us,parents of special need children, read it, because in the end no matter what we become parents and our babies, despite all, come to teach us something special about life. It is a hard and full of struggling road, but it is a full of meanings journey, where we learn to enjoy and appreciate every little tiny step! :) 

Sunday, April 10, 2016

The Jewelry Box!


Since she knew we would be the great part of the day by ourselves at home, she started to make a to To Do list ;-).
And the very special thing on this list was a Jewelry box she saw on her crafts book.
As we couldn't find a box with lid in the house, we had t make it from scratches. Luckily I had art class when I was in middle school and have learned quite a bit. Besides, I love those activities and I am glad she not only likes it too but enjoy making things.
So, we had some hard foam board. I cutted the pieces and hot glued it to make the box and lid. And covered it with fabric, her color choice, and paper. Then came her favorite part of all: decorating!!!
Then on this phase all I did was put the glue on the spots she asked for.
It came out beautiful and the best part of all... She loved it!!!


Thursday, April 7, 2016

Keep going no matter what or how...

This week was a very hard week for me emotionally... It was the week my son goes in for his blood transfusions. Even though I know and completely understand that this is the only procedure available to about 98% of the Sickle Cell Patients that are at risk or had a stroke, it wasn't the option you decided on or wished for him, 3 years ago. And from the bottom of my heart I wished that by now my child would have done his transplant and would be free of this horrifying disorder. I hate seeing time passing by, and as the days keep coming and going I live with the fear of it striking once again. The transfusion are to give him the chance to keep going, but are not a garantee that he won't be at risk. It is only to allow him to go a bit further. As of now, the major cons of getting blood, iron overload, is under control and is not at a concerning level, thanks to the regiment of Yerba Mate Tea and many others natural approaches he is on. And after a long day of waiting and dealing with anxiety is very refreshing learn that everything went well and there was no unwanted changes on his body. But also, this week was a very special week, as my baby Angel turned 16 months old, ironically, the same day Big Brother was out for treatment. The day was filled with mixed emotions. And not all was sadness as I got to spend some quality time with my girls. I find it interesting how things happens in my life... Just 2 years ago, around this time, I was going back to the reproductive clinic to have a pregnancy test done. In fact, just to confirm it because I could feel her inside of me :-).

Sunday, April 3, 2016

A typical NE Brazilian meat!

Cured Meat! - 1 Day Old :)
Despite not being born in the NorthEast of Brazil, I was raised in that culture, pretty much :). Both my parents were born in the State limits from a NE State and my relatives from my Mother's side are from the NE.
Then I got married... And my husband was born and raised in Bahia, a NE State... eating the same things I did.
Coming from a humble family get you lots of pros... You need to learn about everything, and you need to be creative.
Since we live in the USA, it is not easy to find some of our popular food. And one of my husband's favorite food is the Cured meat... So I got adventurous in the kitchen and a few years ago I decided to give it a try. It was a Plus!!! And we were so excited about it that we didn't let it be completely done before start cooking it!!!!
Recently I did it again and got confident. It is pretty easy to make and the results are just amazing!!!! All you need is Beef and salt!!!! There are many ways people make it. I like to put a generous amount of salt on the beef and let it sit in a covered plastic pan for at least 12 hours. Then I drain it and put it in another place where it can still loose its water without being soaking. Also, you can let it dry in the sun. The previous times I made it I left the meat curing in the Refrigerator because was winter.
After the meat is cured, you can store it in the refrigerator and eat the cured meat fried, cooked in the rice or beans, with veggies... All it takes is to soak it in water for remove the excess of salt, before cooking!!!
Cured Meat in the process - 12 hours

Friday, April 1, 2016

From the children's mouth....

After we become parents, is very easy for we lack ourselves and neglect our bodies. I remember soon after having my second baby, as I was nursing I got rid of a good junk of pregnancy weight, but there was the last 5 pounds that no one could really see it, since I've been always a tiny person, but the scale wouldn't forgive and it was mainly on my belly site. And on top of it being making me sad, I was feeling it on my feet. At that time, even a 5 minutes standing would make my feet swell.
Working out with 2 little ones, specially when you don't have family and friends around to help, can be a good challenge. And even my husband would be incentivizing me to go to our condo Gym while he was home, it would have to be too early and wouldn't be something I was going to be able to pursuit often.
As I was due for a physical,  I asked to be checked for bone density. Sure enough, I was having some low numbers on my hips and needed to start something to avoid it becoming an issue. Then I discovered the home workout...
At first, it was challenging but feasible, I could get it did any time and soon it became something fun for the whole family. The first 3 months I did 12-15 minutes of HIIT, every day. And I saw the results very quickly. It made me happy and confident with myself! After 3 months my husband joined me. Then came all the craziness in life, with our son getting sick, and we starting IVF, getting pregnant and my son being hospitalized and needing a lot of support. No, I don't feel like it was a excuse, but after all my body became lazy and I just couldn't feel motivated enough to go back.
Then couple months after I had  our 3rd child, my son looked at me and asked: "Mama, do you have a baby in your belly?" Yes, he remembers how fit I used to be, how much happier I was and I had more energy to spend with them.
As I thought about it, I realize that getting myself back on track is not something good just for me and my body. It is essential for my family.
My children want me happy and confident.
And to start I began this fun Challenge I did back in Sep. 2013...
                                                   30 Days Squat Challenge -BodyRock