Parenting, UNCONDITIONAL LOVE

When one is expecting a baby, one cannot know what will bring the bundle of joy that is growing in the womb. But I knew, when I got the call confirming I was pregnant of my first child, that my child would be first and anything that would come with him would be after. My motherhood began to bloom right in that moment.


The RESPONSIBILITY as PARENTS starts since the moment a little form of human life begins to develop in the womb, NO when the baby is born! Since the first appointment with the genetic counselor, the first thing my husband said to the counselor: We will keep the baby regardless the results. We never let anyone to disturb our family, Tommy was already part of us, even when he was a tiny human fetus!  When I read how much abortion statics, in general regardless the prenatal diagnosis, are increasing makes me wonder about what values parents are transmitting to their kids. Why do they chose to kill the beginning of a human life? When I think of people chosing termination of Pregnancy becasue of T21, It is something I do not accept. Giving a child in adoption is an option for what ever reason a person cannot take the responsibility of a being a parent. I have had the opportunity to meet adopted adults who were adopted by wonderful families. I also know a mom who has a child with T21 and adopted a little girl with T21 from Europe. I see on all of these families something in common, 'LOVE,' which is probably what our society is losing. 


Both of my kids were screening for T21 and results were "very high risk for T21." I know how it feels and I know how scary it could be! But nothing could more than my LOVE for my kids. Here is were the moral values, faith in God and knowing the feeling of unconditional love, that were transmitting from my family, began to work on me without knowing it. Politician are working for building a strong society, but they won't be able to do it if they keep forgetting about 'family ties.' The family is the solid base of any society, abortion goes against it. So this is not about wrong or right, it is about respecting ourselves as humans.

I believe in my kids potential regardless the oldest one has developmental challenges and the youngest one is developmentally advanced. When Francis was born, we didn't notice any difference when Tommy was born. We just saw "BABIES". Because Tommy didn't have serious health issues made possible we could enjoy him, even when he had pulmonary high pertension, he wasn't suffering. Tommy was very alert, even the doctors noticed that. He, in fact, gave us a harder time as a newborn than Francis. Tommy's first month didn't let me sleep much at night and I had help from my mom and my sister. Francis's first months just waked up once at night. Tommy slept through the night since he was tow months old. Francis was 8 month old when he began to sleep through the night. Tommy knew what to do right away when he ate baby food for the first time. It took Francis a month to get the idea. I can go on and on as many differences I see in my kids and I just see that my boys are special, different and unique as all we are. This is our parenting experience with our kids, every family who is raising a child with developmental challenges and a child with a typical development also have their own experiences. Trisomy 21 is not like a cookie cutter. Kids with T21 share the same diagnosis, but the way they are affected varies because T21 is not a diseases, it is a genetic disorder.

Both of my kids don't follow charts. They both are doing things in a different way that what a milestone chart says. Therefore, I don't put  them in the box of stereotypes and I respect them as little individuals. I just praise them! They have taught me sterotypes are breakable and 'average' doesn't exist. There is not way to put a full potential of a child in a chart or in an evaluation. Therefore, believing in my kids' potential is crucial, for me, to develop good parenting skills. 


Having a child, takes you to a most deep understanding of bond and love. In general, Parenting can be stressful, but when you have a child with developmental challenges things get more challenging than having typical kids, but not less rewarding.  The first 3 years of Tommy's life, we spent a lot of time learning and being couch by a staff of therapists who trained us in early intervention, physical therapy, occupational therapy, oral motor therapy, sensory issues, developmental milestones, behavioral issues, social skills, and so on. So parenting my son with a generic disorder, for me, has been the door to knowledge on how to improve my parenting skills. But along the way, I have also deal with frustration, sadness,  tiredness, worries, stress, anxiety, anger and a grift. Not easy! But all these feelings has brought me to growth as a person, as a mother and as a woman for better and forever.


Having my sencond child with advanced development make things just amazing easy, in the way, I don't have to work with him because it seems he knows it all and he has a very strong sense of independence. He reaches his milestones way ahead or right on track without struggles. However, I feel I don't stimulate him, but I try to have a good time when I am with him! I don't know how different things will get as he gets older; if he keeps having an advanced development, this may bring challenges, but I am ready for it!


My boys are my life couches, they are the ones teaching me what really matters in life. Instead of worry about supperficial things, I care for my kids developing a nice personality and social skills. Physically, they are cute kids, but this is a superficial beauty. The true beauty is the one comes from the heart. If a person it is not considered or doesn't have kindness and love for others; then, It doesn't matter how beutiful face, nice body or a perfect height a person can have, if he or she has an evil personality, it will bring the inside ugliness right to the face. I have known people who are physically attractive, but very evil and no one wants to be around them. So Beauty is not all!


Parenting is very complex. It requires a lot of time to learn how to raise kids. Everything I know about child development it's from therapists; reading many, many books like getting ready to take test; as well as, watching other parents how they interact with their kids and following my mom's example on how she raised us with our feet on earth. After all, Parenting is very rewarding. For my husband and I, it is what has made us complete.

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Adoption vs. Abortion
I have become a supporter of an orphanage that is just a few miles from my house, this is my way of fighting against abortion. These little ones need a lot of LOVE and support because they have been abandoned, but they are also facing disabilities. It is already hard for them to face their challenges, but it is harder if they don't have a supportive family on their side. Please if you like to do volunteer job or want to adopt a child, check in your local organizations, you may find an orphanage near you with little ones who just need warm hugs and heard the magic words: 'I LOVE YOU.'

Brotherly Love

When I was little, I refereed to my sister as 'hermanita' (Little sister). Today, I still call her "hermanita," I use the word 'hermanita' as part of keeping the memories of our childhood. She always was protecting me from the monsters in my nightmares or throwing rocks at me because I did something to her. We were not lovely girls to the time we got mad at each other. All these experiences made our relationship stronger. Even, we are 3 years apart, today, my sister knows she can count on me for absolutely everything. I know I can unconditionally count on her. This is exactly what I wish for my boys!


I am just happy that Tommy feels jealousy because of Francis, it is how it should be. Not much different from how it was with my sister  when I was born. My sister jealousy didn't stop until we became teenagers. I am happy that Tommy and Francis have their fights—we are working on be nice and gentle, but boys are rough, so they will get it one day. I am happy watching them playing together because, more than brothers, they are playmates. I am happy watching Francis imitating everything that his big brother does because it is how it should be. Tommy loves to jump in the trampoline and while he jumps he says "salta', "salta." Guest what! Francis climb to the trampoline and pretend he jumps while saying "salta", "salta." 


As a mom, I care about how my kids feel and how they are building the base of their relationship. So I try to do everything equal for Tommy and Francis. I cannot love one more than the other because they both are part of me. I don't treat Tommy with privileges just because he has T21. I don't treat Francis with privileges because he is the baby. The way I see it, it is that they are little individuals that deserve being treated with respect and dignity regardless their ages or developmental challanges. If they are treated with respect and dignity, they will learn to  treat people with respect and dignity.


I show them my unconditional love. My moms made us understand that she would never love one more than the other. It is my turn, now, to help Tommy to cope with the jealousy feeling regardless his communication barriers. I know in their own individual way, they care about each other. The other day, Tommy was in the master room and he heard Francis crying. Tommy got down the bed while saying 'baby' and ran to Francis' room to check on his little brother. Between them there are not differences. They are just brothers!

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take a look at Kelle Hampton's daughters. Her pictures talk by them-self, Trisomy 21 doesn't exchange the love among siblings. Click HERE!

Love without limits

As usual tonight, I got in Skype to talk to my mom and my sister. We chat almost everyday. But tonight, something was different. Tommy, as usual, give them kisses through the screen. But today, he touched my sister face and he realized it was just a cold crystal of computer monitor. He touched again the screen and couldn't feel her face. He got disappointed and it brought tears to his eyes. Of course, we couldn't content our tears either. But we know we love each other, not mater how distance we are. We know that not mater what, we always support each other. We know not mater what, Tommy and them are building something special regardless the distance between two countries. We are excited because my mom will be here in a few days. We are hoping my sister can come soon because we have about  a year and half we haven't seen her. I am glad Tommy is experiencing that love doesn't have limits.

Building memories with a little extra (Part 2)

Wow! We wish we could stay longer in Florida because more than the emotion of going on a tour, we enjoyed each other some much as a family. This has brought a positive effect on all of us. Watching Tommy being confident, exploring, happy and enjoying the noisy environment made us realize he is beginning to heal. Skills I thought were lost began to reappear during and after the trip. In our vacation, we heard Tommy's voice more than ever. He said many words and even new words in English and Spanish. Some of the words I remember he said are: door, 'boca', galletita, ocean, dolphin, gorilla, drink, eat, bear, elephant, run, bye, hola.  One day, he passed by Francis and told to Francis 'I am Tommy Lane.' Which is curious because I randomly ask him 'Who is Tommy Lane? and point at him you are Tommy Lane. I do it just as a silly game. Other day, he made up a song while he was taking his bath. He surprised me! Because I could recall the events had an effect on him to pretend he was a singer –Elmo's DVD, American idol, he saw a singer in Panama city in a restaurant we went to eat dinner and he also saw a singer at Sea world. The night before, he took his clothes off by him self, saw I made a big deal of it. I clapped at him, hugged him, kissed him and made a lot of happy noises. I told him you did it! He said to me 'I did it' (it is not the first time he has said it to me when he has accomplished something). So the next day, he expressed it with a song!

Enjoy the song 'I DID IT' by Tommy Lane, Future American Idol!
He performed at the bathtub in a room at the Embassy Suite Hotel
in Orlando, Florida!

Saying 'boca' (mouth)

Here is Francis showing his moves at Sea World

We truly enjoyed this trip, specially, Tommy. He enjoys the evelevators, the hotel and even the halls at the hotel. He trully knows how to have a good time.

Here is the video of the moment we all were waiting

for,face-to-face, Tommy and Elmo. 

You can see the paparazzi (mom and dad) working together to capture the moment!

 

We all love Elmo!

Having fun the night before going to Walt Disney World

Yes! Tommy drove, but Daddy took over after 

crashing many times!

 

Tommy attacked me with kisses

I love this picture because it shows how we are as a family

I love this video of Tommy because he showed good manners while coughing,

 greeted at the camera and answered my question.

THE SKY IS THE LIMIT!

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Tips for families with a member with developmental challenges:

• I know that thinking on vacations is something many of our families with a child with developmental challenges cannot even think about it because of the high medical bills and private paid therapies. But there is always a way to make things can happen. The website www.autismtravel.org gives good ideas on how to organize a family vacation with your love one with developmental challenges. 
• Depending on the child's diagnosis and medical issues, it would be good considering the services of a travel agency for people with developmental challenges.  I personally don't have experience working with this type of agencies, but I want to share the information with other parents. Hammer Travel is a travel agency dedicated to help adults and children with developmental challenges to enjoy a vacation. To get more information you can visit their website: http://hammertravel.org/

Building memories with a little extra (Part 1)

There are families that prefer to wait until there kids are older to plan family vacations, but when it is a family as our, that have a little extra, a family vacation is a need. We don't have much free time in our typical routine. After I leave from my work, I run to do what ever therapy, chiropractor visit or anything needs to be done to help Tommy overcome his challenges. I don't go to bed until 10 pm or 11pm depending on how things are around the house and wake up the next day at 5:45 am to get to my work at 7:00 am. So I am on the run all the time. I don't have the time other typical moms have, but I make it works. Our first years as a family, we spent a lot time with our son's therapists rather than with our own families. On top of that, we have extra worries and stress about our son's development than with our typical child, as well as, medical check-ups and appointments, which are time consuming, but we truly believe in monitoring Tommy's health makes a huge different in his quality of life. So to function as a family, we need a relief. I hope and pray other families with a child with a genetic disorder can have the same opportunity than us to have a family vacation every year.

Planning a family vacation with a child with developmental challenges may be more challenging. So we want to share a few tips when planning a family vacation with a child with a genetic disorder, sensory issues and food sensitivity based on our experience.


Tips for a route trip:

• Choosing a season. We always choose to take our vacation in Spring because touristic places are not too crowded and the weather is nice comparing with the summer that can get too hot.  Our kids suet like crazy.
• Choosing the vacation destiny. Plan your family vacation in a family friendly place because you always will find people willing to help. As well as, considering your child's preferences. Tommy is an animal lover, Elmo's best friend and He loves being on the water. So we considered these things while planing our vacation.
• Previously expose your child to the environment he or she will be having fun. I got books to talk about the ocean and sea creatures. So he was ready for the beach! I also got new books to bring in our trip about topics he is interested on. He is very interested in Cowboys, so I read his new book.
• Booking the hotel close to an organic grocery store. Our favorite organic store is Wholefoods Market, they have many locations around the country. So you can get food your child can eat. We chose Embassy Suite Hotel and the closest Wholefood was about 2 miles or even closer. 
• Packing food that the child can eat during your route trip. A few examples are: rice chips, oat cereal, apple sauce. It will depend on the child's food sensitivity or allergy..
• Getting thermo coolers. We had a small thermo cooler bag to transport our supplements. As well ad a tote bag to trasport cold food such as goat milk if you are doing a route trip. 
• Checking the menu of fast food stores, if possible before going on vacation. You may be surprised. We found some food for Tommy in fast food places. But I don't recommend this, if the child have food allergy. In our next vacation, I will call some fast food places to get detail information about the food labels.
• Packing a few a familiar toys, books and if possible a few home made toys. A small blanket to play hide and seek or peak-a-booh in the car. Tommy and Francis had so much fun being cover by the blanket.  Play simple games while on the route, such a pat a cake or singing your kids favorite songs. We had fun!
• Bringing technology on your vacation. If possible borrow a TV for the car, bring your iPad, download your kids favorite music to your iPhone. The cable to plug the TV to the car, can also be used to plug the iPhone and listening to the iTunes. 
• Smaller Strollers. Umbrella strallers are ideal. Walmart carries one that support up to 100 lb at an economic price.
• Small vibrating massager. I brought a small massager, so before going to bed, I gave massages to Tommy to help him to get calm. I just did it the nights he was very active and didn't want to sleep.

Enjoying the beach at Panama City, FL

 

Celebrating Daddy's Birthday

Sea World

Tommy got captivated by the sea creatures

Bush Garden

Look at his smile. It was the exact moment he saw at Elmo from far away.

The moment arrive. We all were excited when Tommy met Elmo

You can tell how happy he was after meeting Elmo

 He couldn't take an eye out of Elmo 

He enjoyed the gorillas. He even was thumbing his chest as a gorilla.

Tommy regularly doesn't drink plane water. But he did it at Bush Garden.

We are extremely blessed that Tommy is an adventured and risk taker, as we are.

He loves the change of routine. In fact, he is a happier child when we take him on vacation. 

He has traveled since he was a year old and we don't know other child who loves to travel more than him.

We have so much fun that we decided to stay one more day. We have a great time! 

I will post more photos and a few videos of our super boy in his trip to Florida.

THE SKY IS THE LIMIT!

Getting Older

Tommy's little brother is getting older. He is a month and 4 days old! We have observed how Tommy is beginning to accept the baby. One day, Tommy came where the baby was and give the baby a kiss on his head. Other day, Tommy was really quite at the leaving room so Adam went to check on him and Tommy was gentling touching the baby's arm.  A couple of occasions Tommy has handle the pacifier or the baby bottle to me by his own inactive without prompts.

Yesterday, Francis has his first bath. It may be a little late. But his belly bottom took a while to completely dry off. I was also waiting on daddy to be at home because little moments like this one are the ones we enjoy the most. Tommy, mommy and daddy had fun giving Francis his first bath. But Francis had a hard time. What a difference when Tommy had his first bath, he was like a ducky ready to get into the water. I am glad we are weakness of the marbles God can do and it makes be thankful that we didn't miss anything with Tommy as newborn, we enjoyed him as we are enjoying Francis.

Tommy was laughing at Francis when he began 

to cry. It seems he truly understood what was going on.