We decided to create a blog so we could share with family and friends about "our journey". Our son Noah is 4 years old and he is the constant light in our world. He was born with a rare genetic disorder called Rubinstein Taybi Syndrome.. Life has not always been easy but Noah has taught us how to be courageous. We are so proud of his accomplishments the past four years. He is beautiful, funny, courageous and strong. We feel so blessed God has chosen us to raise Noah.. We also hope that new parents receiving an RTS diagnosis will find comfort in our words. Nicholas is the perfect addition to our family. God has once again blessed us with a amazing, beautiful little boy. We are so comforted knowing that Noah now has a little brother. Life is beautiful having these two angels in our world.
Friday, July 31, 2009
I stared into Noah eyes this morning and studied his face for a long time. There was something different about the way he looked to me. I couldn't figure out why he looked so different and then it hit me like a ton of bricks. My baby is growing up. My baby will turn 3 on Oct 15th. Has it really been 3 years almost since this angel came to me? Where have these years gone? My baby is actually becoming more independent and looking like a little boy instead of a baby. How did this happen so fast? Then I started to think about the future. Right now I feel like I can always protect Noah. He is always around me so if anything goes wrong I can be his voice. I can pick him up, kiss him and tell him everything is going to be ok. But soon I will have to let him go. I will have to send him to school and hope that he will be ok without me. I will have to believe in myself that I have given Noah all the right tools to be ok without me. Noah is my angel and he always will be. I have carried him through hard times and amazing times. Noah has actually carried me through a ton of dark times too. He just doesn't know this yet but he will. I know that when I can't be there to carry him his wings will. His "angel wings"will carry him through life that sometimes is hard. A life that sometimes doesn't give us everything we want. But I know Noah only will see the beauty life has to offer. He is so lucky to have a heart that will only love. His heart is pure and innocent and he deserves his wings. Soar through life Noah. I will be right behind you holding on.
Wednesday, July 29, 2009
I can't believe how much Nicholas is changing every day. He was 7 weeks old yesterday and I swear every time I look at him he looks different. He can almost hold his head up without assistance and he is smiling and cooing like crazy. When I put him on the floor he already rolls to the side . He looks like he really wants to roll over already. He is still not sleeping through the night but we are working on it. He eats like a champ and he is crazy about bath time now. Hmm maybe Noah told him how fun it is. Noah loves bath time.. I have to take the time everyday to study Nick's face because it will look different the next day.. I love you sweet Nicholas.
Tuesday, July 28, 2009
Walking... This is what is keeping me up at night. I know I shouldn't be beating myself up about it but I am. Yes, I know, he will do it when he is ready. I have even been bold enough to give that advice myself . It is so hard to accept my own advice sometimes. Just the other night I was sitting on the couch telling my husband that I feel like I have failed. Why can't I learn to accept that I can't control this?? Still, I can't control my fear and anxiety where this is concerned. But here we are in the moment trying to find hope. Trying to keep holding on knowing that one day soon Noah will walk. I have said to myself that it is a hard thing to be a mom and have to pray every night that your child will walk and talk. But then I read other blogs of mom's whose children will never walk and that forces me to put things in perspective. My little man is taking small steps forward. I know that he will make it soon. He is the biggest fighter I know.
Friday, July 24, 2009
Ever since Nicholas has entered our lives Noah decided he is going to be a comedian. He is all about making us laugh hysterically whenever he has the opportunity. I think this is his way of saying "Look at me I better still be the center of attention". Noah loves to take the cap of the baby's bottle and stick it in his mouth. He crawls around with it hanging out of his mouth while making a really funny growling noise. When I crack up laughing this makes him get even crazier with the noises. It truly is one of those you have to be there moments but it is soooo funny. His personality brightens my day.. He is such a great big brother.
Wednesday, July 22, 2009
I have been feeling down lately. There is really no other way to put it. I have been really frustrated with Noah's development. Feeling like nothing I do is good enough, like I haven't worked hard enough. The walking, communication, all the extra work it has just been feeling overwhelming. Then I captured these photos and I realized my children are happy. That is really all that matters.
Monday, July 20, 2009
I have the Welcome To Holland poem hanging on my refrigerator and everyday I take a glance at it. Today however the poem got me thinking (especially this part) "But everyone you know is busy coming and going from Italy. and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned. And the pain of that will never, ever, ever go away. because the loss of that dream is a very very significant loss." After reading this a couple of times I thought to myself that I don't want to live the rest of my life with pain. Why can't the pain go away? Why do I have to live the rest of my life wishing I had gone to Italy? Why can't I create a new dream? Why do I have to live the rest of my life mourning a dream that never came true? I don't want to live my life like that. It's not fair. Dreaming a new dream is what helped me accept Noah's diagnosis. I had fantasies of what it would be like and those fantasies simply did not happen. But I had to move on. I had to embrace Holland with everything I had inside of me. I had to reprogram my mind to accept the less flashy life. The slower pace, the beautiful scenery that Holland had to offer. Holland has made me whole. It has made me a better person. Fast forward almost 3 years I also have made it to Italy. Italy has taken my breath away just like Holland but in a different way. Italy grabbed my heart strings and pulled me in. I am proud to say I have traveled to both countries. They both have beauty and I can feel the wind on my face no matter which country I am in. I will continue to embrace the uniqueness of Holland and the happiness of making it to Italy.
Tuesday, July 14, 2009
I am having the hardest time deciding what to do about Noah and school. It is a nagging feeling that I am getting in the pit of my stomach. Sending my little guy who is turning 3 in October but looks like he may be 18 months old to school. How do I do this? How do I let myself feel OK about this? It might me easier if Noah was walking independantly but he's not right now. What if he isn't by the time he turns 3? Then its a even worse thought, sending my 3 year old who can't walk by himself to a foreign place. That is such a big fear for me. Noah will be evaluated at the end of August by the public school system. I am petrified about this as well. I am debating private and public preschools right now. As you can tell I just need to get these feelings out so I can deal with them soon. I know I don't want to hold Noah back based on my fears. And I know if I keep him out of school this year that is exactly what I would be doing. Noah is awesome around other children and I know he really needs the social development. I know that he will thrive once he starts school but I am still scared..
Sunday, July 12, 2009
Last weekend Tom and I decided to take Noah and Nicholas to the Nickelodeon Hotel in Orlando. Yes, I know we were brave to take our 4 week old infant to a water park but I really needed a break from Jacksonville. We took our 11 year old niece with us and she was a huge help with the kids. Noah was able to meet Sponge Bob and all the other cartoon characters from Nickelodeon. My niece had to tell me who was who. We got some pictures of Noah with sponge bob but he was sleeping in my arms and could of cared less. Noah loved the water park and especially the toddler section (he could sit down and splash his little feet and hands around). Tom did decide to break the hotel rules and take Noah down the big boy slide. He put Noah on his lap and off they went. Of course he got in trouble with the lifeguard there (ha ha). I teased him about getting in trouble with the Nickelodeon police. Later when I was walking Noah around the water slides, he pulled me towards the big boy slide and signed "more". I felt so bad I couldn't take him on especially since he signed for it. Nicholas pretty much slept and ate the whole time so he was no trouble. We did take turns going inside and strolling him around so he wouldn't get over heated. It was so nice to get away and feel like a family with our two boys. I really enjoyed seeing Noah so happy and so much in his element. Hopefully we will get away again wsoson.
Thursday, July 9, 2009
On 6-9-09 at 4.39 pm Nicholas Aiden Suarez came into our lives and changed us forever. With two easy pushes our beautiful, healthy, loud crying son made his existence known. I will never forget the feelings I had right before I laid eyes on Nicholas. I was so petrified that they were going to take him away like they did with Noah. I couldn't even breathe. I looked at the DR and said " I can't do this." But of course there was no getting up and running away at that point. I felt frozen almost like I was outside of my body. After only ten minutes of pushing I heard our sweet boy crying. The Dr laid Nicholas in my arms and I felt my breath somewhat return. I looked at his hands and feet first. I studied his thumbs for what seemed like an eternity. Then they picked him up and checked him out. I still to know everything was fine. I was so scared. Everything was so different the second time around. I didn't have to lay eyes on the NICU. I didn't have to see my baby with IV's, feeding tubes and Dr's that never left. There I was alone with my baby and my family. It all seemed so unreal. I couldn't wait to see Noah and have him meet his little brother.
When Noah arrived he could care less about his brother, he just wanted to explore the room. I had Nicholas on Tuesday and Thursday at noon I was discharged. What a wierd feeling to be leaving the hospital 48 hours after I gave birth. (with Noah I stayed in the hospital for 5 weeks while he was in the nicu) Everything just seemed like a dream. Noah is handling having a little brother in strides. Some days he wants all of my attention and he ignores the baby. Other days he is very interested and wants to help me change his diaper. He always laughs hysterically when Nicholas cries. Sometimes he tries to comfort him by gently stroking his arm.. So Sweet.. I think Noah is going to be an amazing brother. I also see in Nicholas that he will be Noah's protector. When I look into Nick's eyes I see strength and love. Just like his big brother Noah. They will make a perfect pair. I am so blessed to have two beautiful son's . Thank you God.