An angel has arrived to my life...

Some how I need to talk about that day; because it mark my life before, and after Down syndrome.  But the funniest thing is that I hardly remember those days... During the pregnancy the tests come back with low risk of Down syndrome like the majority of the pregnant woman's,  (I always thought those tests are unnecessary because even if your baby have Down syndrome you still will love him, maybe even more!) so we decide don't make any further tests, the only estrange thing I remember, was Camila's movements, always so soft, even weak, but  I always thought that was because I wasn't getting any weight ( terrible nauseas), she born 3 weeks before the due day...

Twenty months ago I arrived at the Hospital, excited for my princess’ arrival, and sure that would be one of the best days of my life, and it is, but at the same time it makes me sad to recognize that is also one of the saddest days, and since then, I started my fight for some day to be able to say that was a very happy day and finish the sentence there…

I remember perfectly, October 8, 2009, I wasn’t nervous at all, I wasn’t scared either, I was simply happy! I knew that nothing could be worse than the three days of induced labor that I had with Laila, but honestly I never expected a five minute delivery! Ok, ok, maybe I’m exaggerating a little bit, but really it was very fast, she was so so tiny and fragile, she don’t even look like a real baby,  I was afraid to hurt her when I touched her, I was scared of the apgar results, but thank God they were normal; I wanted to hold her but they just let me do it for a brief moment, because they had to finish the check up.  My husband explained me that they see some Down Syndrome characteristics in my little princess, we had to wait for the pediatric evaluation, the pediatrician examined her for a long time, at least that is what it seems to me, when he finished, he informed us that she does have some light physical futures that may indicate Down Syndrome, but that she was so small that maybe she just looked that way because her extreme thinness and for how small she was. 

They made some blood tests to confirm the diagnostic. I didn’t notice before, but the second the doctor left the room and I saw my daughter I knew it, I knew my daughter hads Down Syndrome, maybe that was one of the things that I mentioned the most in my night prayers when I was expecting her, “please God give me a healthy baby, complete, that can hear, see, ten fingers and ten toes, without Down Syndrome, without any kind of problems” all those things the moms pray for I suppose; but even so  I prayed for the same every night, honestly I never even thought of the small possibility of my baby having Down, that just can’t happen to me, it was impossible, neither my husband nor I have any relatives with Down Syndrome, we are not in the risk age, I took good care of my pregnancy, I’m healthy, I took all my prenatal vitamins, folic acid, I go to church every Sunday, I’m a good person, this just can’t happen  to me, and I know none of these factors are associated with down syndrome, but that is something that my head may understand, but not my heart, my heart just feels a terrible blame! Maybe if I had eaten better, maybe because I painted the house before I knew I was pregnant, maybe if I was a better person, so many “maybes”  torturing me. Immediately after such thoughts, I started feeling a deep sadness, because in no way did I want the birth of my daughter being a sad memory, much less that my baby received that bad energy, I needed my baby to know how much I love her! Since the first second I knew she existed, and how happy I was for being her Mom, and that if I could turn back the time I would have her again and I would love her as much as I love her now!

She had to stay 8 days in the hospital, it was so hard making her to gain weight, she had done all kinds of tests, and everybody kept telling us how lucky we were because her heart is normal, when we left the hospital they told us the hearing screening test was abnormal, but that didn’t mean that she couldn’t ear, she was just so so tiny that probably they just can’t make the test right, or that is what they told us, of course after  thousands of tests and even having to let them put tubes in my little princess ears (very scary, and  I know it’s a relatively simple procedure, but when they have your baby there all sedated it’s just horrible), but still the conclusion is that she has unilateral hearing loss, meaning that she can’t ear from her right ear, and the hearing in her left her is “almost normal”.

A few days after, a new knock, for some reason almost devastating for me;  my daughter had hypothyroidism, she would need to be medicated all her life, I started reading, I wanted to learn all about the persons with Down Syndrome; but unfortunately I just found desolate realities, or at least, it seems that way, I couldn’t find a little bit of support, hope,  just a endless list of all the diseases and problems  that my daughter will be more like it to have just because she  has Down Syndrome, just general information.

I admit that in situations like this ideally we should get help, from family, friends, neighbors, parents support groups, but unfortunately, when we most need help, it is when we are less able to receive it.

I recognize that before Camila arrived, my marriage was marvelous and simply perfect, but with Camila’s arrival, it united us even more, it truly converted my husband and I into one, stronger and more in love than ever, ready to fight anything!

A nurse from the hospital, father of a 4 year old boy with Down syndrome suggested that I go to a parenting group that he went too; we went once Camila was almost 1 month old, but it was so painful, I didn’t feel prepared, honestly, I still don’t; I know that it would be a big help, but I also accept in those moments I didn’t have the energy, of confronting it, I didn’t have the energy to touch the issue with friends and family, without breaking down in tears; all of my energy was concentrated in keeping myself together, without going to pieces, I confess that during the nights my little baby was in the hospital, and having to return home each night with empty arms, I just thought about crying, throwing myself into bed and crying until I fell asleep and forget about everything!  But just then the blame come back, I couldn’t, to many things to do, specializes, doctors, breast feeding helpers, everything so exhausting, so fast, that I couldn’t  have the luxury of being depress, plus, my older daugther need me too.

Maybe one of the most difficult situations was facing the words of relatives and friends, all of them with good intentions I know, but there is always someone that seems to be giving their condolences, o who tell you  that God bless you with a special baby because you are special, other people  just say something like nice! I eared those kids are very loving! One day after Camila’s birth, one relative ask to my husband and I “How it feels to have a baby with Down syndrome?” I thought it was so unapropied. It make me so upset eared all those  prefabricate words, I couldn’t understand my self, in one hand it make me very angry knowing how some people feel pity for me, I don’t want my daughter or my family being cause of pity; but in the other hand I also get so upset with people that seen celebrating because I know they have no idea of what they were talking about, about something that is sooo far so unreal for them, they can’t possible imagine how devastated I was feeling and don’t matter what everybody say or not, I just feel so angry with everybody! And then I feel so upset with my self for being angry!

When Camila was about 2 months old, a relative told me that maybe was a punishment from God, because I wasn’t close enough to him. Nothing in my life ever make me more upset and sad at the same time, but I still was strong enough and I remember telling her, “no, Camila is not a punishment from God, she is a blessing and if God send us Camila is because we are closer than ever to him, and is an honor that God think that our family is strong, stable, loving and good enough, to give us one of his most loved Angels, my daughter!  And I will never thank God enough for her.

But in spite of all this feelings and emotions,  I loved and adore my daugther with all my soul since de first instant I saw her, with all my strength and every day more, and I never feel even a pinch of rejection or deception for her. I always thank God for my little angel.

When we got the confirmation of the diagnostic, two genetics would talk to us two days after she was born; two genetics I thought to my self,  this couldn’t be good, I knew which would be the diagnostic, I know they talk to us for hours, I don’t remember a thing,  I got lost in tears when they confirm that my baby had Down Syndrome, down syndrome for the rest of her life, down syndrome forever.

Having Camila made me face so many things, I always thought that everything is possible, that everything can be change, everything have solution, everything has a cure, is very difficult to think in the word forever, specially talking about babies, is so hard to think that is nothing to “take it away” because obviously is nothing that can “cure” Down Syndrome, and is not medicine or surgery that can “cure” her hypothyroidism, and also any surgery can  “cure or stop” her unilateral loss of hearing (at least not yet...).  I never thought I would face so many impotence, so many forever’s, so many for the rest of her life… Me, that always thought I have everything under control. 

My husband just keep asking why us, if we are good persons, never did wrong to no one, we love God, we go to church; and something happen on my heart and I felt so happy  because this happen to us; and I told my husband, that is why, that is why this happen to us, precisely  for all those reasons, because God know we are good people, because we have so much love for each other, because we have a wonderful family, God trust on us, he believe we are special enough for have a special child. God knew we will take a good care of her and that we will love her more than anybody else in this world, that he couldn’t find better parents for her than us. I told my husband just imagine, if God would send Camila, our Camila to alcoholic or drug addicts parents, they would never be able to give Camila all the love and care that she deserve, and then we thank God for putting Camila in our arms, under our care and not to somebody that would not love her like we do.

Even so, I thought it would take me years to get through all this, if I ever get though it. But it didn’t take years, it take just a couple of little smiles, a couple smiles of my beautiful and beloved daughter and everything started turning pink and perfect, and that same smile is the one that gives me the strength to do everything in my power and even out of my power for her, to help her exploit to the maximum al her capacities, and even more important, to make sure she is love and happy.

My baby isn’t any different of any other baby, she cry when she is upset, when she is hungry, if something hurts or if she need a new diaper, she smile when she see mommy or some familiar faces, now that she is saying her first words, she makes sure everybody can hear  when she says “eat or sleep”; she yells “mamaaa, papaaa, Lailaa” when she is alone, she claps to herself and says “bravo” when she has an achievement; now she is an expert crawler, she  pulls, brake, destroy, anything on her way, my diaper bag is never safe with Camila around…. And mommy’s computer is Camila’s favorite “toy”; this is my baby, the one that makes everybody smile anywhere she goes, the one how still prefer to sleep on mommys' chest, the one that gives kisses to everybody, the one that make me immensely happy with each tiny little hug, with each kiss, with each achievement, with each trying…

I know is still so many open hurts to get heal, but I also know that we are in the right track and now I also know that is ok to feel sad if your child have a disability or deficiency, that doesn’t means that you love your child any less,  is the opposite! Is because we love them that we feel sad, and worry about their future, is more than obvious that this will change ours lifes, it would require more union, more strength, more hard work, more love, from all the family members, more time and dedication, but in the process we will find out how wonderful that it's, and how much we will learn with our baby and each success don’t matter how small they could be, will be like glory to us and will be the cause of so much happiness! Success and happiness that when we have a “regular” child, pass trough sometimes without even noticing those everyday achievements.

I also think that inside of our self is the power of make a difference in the life of our Children, and why not? In the life of others! Lets help our kids to go above and beyond, to end with the taboos about Down Syndrome people, to exceed all what is witted in the books and to educate this society that like everybody else, persons with Down Syndrome have feelings and emotions, strengths and weakness; but specially very capable of give and receive love and ready to transform the life of those who have the fortune to know them.

I love you Camila, thank you for let me be part of your life, thank you for make me so happy!

TOYS, TOYS, TOYS!!!

Toys can be the perfect helper when is time to help our kids to learn something, with my first daughter how is four now, we just bought tons of toys! Anything she want, anything we like (of course all mommy’s and daddy’s favorites when kids) they don’t even fit in the house! Like my husband said, we have a little fortune in toys! Like kindergarten teacher, I tend to look for educational toys, so most of them are good anyway!

Put getting to the point, with Camila, I change my strategy either reusing Laila’s toys or buying new ones, I always have a specific purpose with each toy Camila get; we always have specifics goals, and I buy the toys  thinking in those specifics goals I’m working with, either sit, crawl, stand, eat solids, talk, etc.

Here is a list of some of my favorites!

FOR SITTING

• leapfrog drum

This is one of my daughter’s favorites toys, and thanks to this drum Camila learn to sit, perfect size for be between the baby’s legs, lights and music, and is also a bilingual toy (Spanish and English) that in our case, being a bilingual family, is just more than perfect!

• ball (22” – 25”)

  

  try to use soft ball with bright colors, and help your baby sit hugging the ball, this position is easy when learning to sit because the ball give them support and security.

  



• bumbo seat

• vtech discovery nursery farm

This is a prize winning toy! At least with my girls! Laila’s favorite toy since she was 4 months (and she still play with her little piano like she named), and Camila’s favorite too! Is a very complete and versatile toy, lights, songs, animals, numbers, colors, and I can keep going (and no, I don’t get any commission for this haha).

FOR ROLLING AND CRAWLING

• Fisher Price Baby Playzone Touch & crawls friend

This is my favorite! Complement of Camila’s godparents; the baby just have to touch the toy and this move and turn all over the place, surprising fast pretty good in carpets but even better in tile or linoleum floors (my home is 80% carpet and work just fine!), have lights and very happy songs.

• vtech move and crawl ball

As the fisher price toy, this roll everywhere! But slower, giving time to the baby to get to the ball, was specially perfect when Camila was rolling or army crawling, also plays different songs and lights.

• Balls

Balls are simple and always  catch kids attention; is always good idea, have  a few options, like sensory balls, fabric balls, hard ones, soft, heavy, light balls, homemade balls,  oversize balls! Just make sure they are not choking size;  I use them in so many different ways, Camila like to fallow an oversize yoga ball since she was rolling until now that she is an expert crawler, and I also use this ball for make all kind of exercises on Camila, really one of the most functional “tools”  we  get for our little princess. She also like to roll and fallow tiny little balls that make that have a bell inside.

• earlyears toys Swirly Orb



• yookidoo swap n go snail

This is another cute helping toy, as the others, this also moves and play music, and also have detachable pieces, is a pretty complete toy that you can use with different purposes. 

FOR KNELLING AND STANDING

• tumble forms raised rolls

I borrowed these from Camila’s teacher, and are great for different purposes unfortunately  they take some space, I have them in different places on the living room,  and she like to crawl over them, but before she was crawling I put camila in fourth over the roll, I help her climb over the roll, we also used like a bench she sit on the roll and plays in her activity tables; now for add complexity we put toys in each side of the roll, that she have to grave and put over her table.

• Basic Play Set by Childrens Factory

I Love this toy! Great for introduce the stairs, which is always a good  idea to teach specially if you have stairs in home, even if you "always" close the gate; plus climbing is always good for strength and the little slide will help the abdominal muscles.

 

 

• vtech sit to stand walker

Like most of the vtech toys, very complete and entreterning learning toy.

• chicco flip n play table

• Zany Zoo Wooden Activity Cube

This toys help Camila to get on her knees, and specially the zany zoo, help her to stand.

• Furniture

She is starting to cruise in the sofa, tables, chairs, and this is something that you already have in home! Encourage your baby to do it and help her. Stairs area other great tool.

• Empty box of dippers
• Blanket

I sit Camila inside the dipper box and I pulled with a scarf all around the house, she have so much fun! And in the same time she (fortaleze) her abdominal muscles.  Now that the box of dippers isn’t that challenging any more; I changed for a blanket (occupational therapist suggestion, we sit Camila in the blanket and pull her everywhere. 

FINE MOTOR TOYS

• lamaze soft shape sorter





playskool toys busy poppin pals toy

• Fisher Price Little Superstar Classical Stacker

• sassy stacking cups

• stacking cubes

• early years toys stacking activity cubes

• vtech count and learn school bus

• Jumbo rope with wooden rings

OTHER GREAT TOYS

• Bubbles

Bubbles are multiuse, the perfect incentive!


• vtech record and learn photo album

This toy is wonderful! We put pictures of Camila, Laila, mom and dad, grandma and grandpa one of us in each page and we record our names or however we want her to call us, we also put a family picture as well; each time she turn the pages she can hear our names, in my case she ear mama, mama, mama; and she can press a button if she want to hear us again or just turn the page, it also have other activities, like songs, numbers and colors. Now that Camila know us we are thinking in put pictures of parts of her body, you can also use it with colors, shapes, animals, commun objects, etc! Practically you can put pictures and record anything you want your baby learn.

• fisher price ocean wonders seahorse

•  baby Einstein take along tunes

• V Tech Baby learning laptop