Sunday, October 30, 2011

Love beyond words...

Wow I can't believe this is my 200th post! So much has happened since I started this blog and I am honored that so many people have fallen in love with our little miracle!

Jacob is such a blessing and has been through more in his short life than many go through in a lifetime. Jake is the strongest boy I know and I am so proud of him for everything he has overcome and for the amazing boy that he is. One day I hope to share this blog with Jacob and show him just how much he has overcome and how many wonderful people followed his story and rooted for him! Thank you for allowing me to share his story with each of you. Tonight I want to vent a little for my own sanity about this next hurdle in Jacob's Journey.

As a parent you always worry about your child. As a parent of a child with a life threatening disease this is of course multiplied. But it is not just the major things that worry me. Lately I have been so worried about Jacob's development. Not because I am afraid he will be delayed because that doesn't matter to me. No matter what obstacle we face I know that we will be stronger for it and I will love Jacob with all of my soul regardless. I worry because I see how frustrated he is getting with not being able to communicate with me and that breaks my heart.

Jacob says some words but it is more like baby jabber than really talking. He does say "Mama, Dada, yeah and things like that but he just jabbers them. It is not like he looks at me and is calling my name. He is progressing slowly and recently has started saying a lot more sounds. For instance when Aidan takes a toy from him he puts his hands out and says "Ma" "Ma" really short and fast but we know that he is saying "Mine". I can't imagine how hard it is for him to talk when it takes so much effort just to breathe. The fact that he can jabber at all is a miracle. Still as a mother I desperately want to give him a way to communicate. The more time that goes by without him talking the more I fear how hard it will be for him to begin to talk.

We have tried to point to pictures but he is not interested in that. The one thing that he seems to love is Baby Signing Times DVDs. My mother in law gave them to us when we had Aidan and they were a huge success with him. He loved them and would watch them non-stop. I recommend them to all parents! I started them with Jacob a few months back and the past few weeks he has really grown to love them. If they are not turned on then he brings me the DVD case and hands it to me. If I don't put it in fast enough he starts to throw the remote at me lol. So he does seem to understand what he wants and is starting to tell me things in his own way. If he doesn't want something he shakes his head back and forth very fast or pushes it away. Most of the time while screaming. Jake also loves to imitate you. Because of this we think that he does understand us. He will interact with me and with his toys etc.

The problem I have seen lately is his frustration is growing. He gets irritated over the littlest thing and throws himself on the floor, throws his head back and does a inch worm crawl on his back while screaming. I have place my arm on his chest or touch his face and tell him it is ok. Rubbing his feet seems to soothe him as well. It is happening more and more and I feel so helpless. I also really want to make sure that he recognises the objects we are playing with. I have started placing objects on a try and then asking him to point to the ball or point to the car. So far he just plays with the one he wants and doesn't really respond to my request. His therapist did point out that up until now we haven't really "Asked" much of Jake with things like that so it may take time but it doesn't mean he doesn't understand. He may just not want to give us the car etc. He does give me a kiss if I point to my cheek and say Kiss Kiss. He leans in and gives me a big open mouth slober kiss on the cheek lol. He is also really great at building with blocks. He loves to build towers out of blocks and when he uses them all and his tower is standing he claps and it sounds like he is saying Yay. Tonight Jake did do the sign for "More" and the the sign for "Signing". That was a huge break through for us. Before he would watch the dvds and move his hands around but tonight it was obvious he was wanting more signing times.

This life has taught me so much about taking the little or big things for granted. I know Jacob is still young and most likely he will catch up and be able to talk. I also always knew that because of the lower oxygen levels he may have delays. His therapists have told me that his motor skills are very good and boys tend to focus on those before their talking. Girls are the opposite. I know he will talk when he is ready if he can and if not, we will find our way. This is just one more path along Jacob's Journey and one more lesson in patience for both him and I. It is so frustrating to see him get so angry and so frustrated but I know that together we will find a way to communicate and we will be stronger for it.

Thank you for letting me vent and get my worries out here. Tomorrow the boys are having their pictures done then we are going to spend the evening carving pumpkins and just enjoying time as a family.Then Monday is Halloween. The boys are trick or treating dressed as Woody and buzz from Toy Story. I let Aidan pick the theme. He is so excited. Happy Halloween everyone!

Aidan and Jake at the duck pond...

Jake was not a fan of the ducks.

Mommy & Me

Hanging out in our new Toy Story PJs!



  1. I know your worry connor only says a few words but in every other way is beyond what he should be doing as a 22 month old .... Each baby has his/ her time to do things I just know I worry about everything too !!! I just wanted to let you know your not alone we too are facing this too!!

    Heart hugs Ivy

  2. It is so hard not to worry non-stop about our kiddos. I wanted to tell you that my heart healthy 3 year old barely said anything until he was about 2 1/2. We put him in speech when he turned 2 and, honestly, I was a nervous wreck. My head went all sorts of places as to what could be wrong. He was crazy good at motor skills, just did not even care to talk. I would literally beg him to try to copy what I was saying. Now the boy talks non-stop and we would not mind if he would slow down just a bit :) He still has some trouble with enunciating and needs some more speech work (we have had to pull him out for a bit since Madison arrived). But, he is just doing awesome.

    Hang in there!