Our Journey

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 9, 2010

How Do You Deal With It?

I have been doing a lot of thinking lately about Noah's Speech or lack thereof. I have been trying to be true to myself and my feelings. Some days I don't even think about it and the thought that Noah may be nonverbal doesn't sting as much. But other days it tears my heart in two. I really don't share these feelings with many people and I was hesitant to write about them. But this is my blog where I can release any feelings negative or positive. I love with a capital L the fact that Noah is signing and getting his wants across. I love the fact that he can use pictures, a device or whatever to communicate but that doesn't compare to hearing his sweet voice. I am grateful that he says "ma ma" and I'm even more grateful that he has the ability to understand sign and other forms of communication but sometimes it doesn't feel like enough. The unknown is what gets to me. If I knew one way or another if he was going to talk I could just accept it. But the not knowing is so hard. I still don't think any parent should have to sit and wonder if their precious child will ever talk or walk? I hate it if I'm being honest. But then I feel guilty complaining because I know there are children and parents that are in a much harder place. I should just be grateful but it's still not fair. If you know what I'm feeling, I'm curious to know how you feel? How do you deal with it in your mind? The unknown? I do feel that I have long accepted the chance that Noah may be non verbal but it doesn't mean I have to be in love with the idea. But I know acceptance is vital to me. I would love to hear any thoughts.


drurylove said...

The unknown is probably the hardest thing in the world. I know in my heart that Noah has come a long way and so do you. Don't feel guilty about having these feelings. You should never be afraid to write how you really feel. It is your blog where you should feel safe to share you emotions. I know how proud you are of Noah, but just know that you never have to censor how you feel. You are human Kristi. We are all here to support you. It is ok to be human and to write how you really feel. You should not be afraid to do so. I am always here for you, no matter how you may feel. I love you guys so much.

marilynd65 said...

I am so proud of Noah's great job with signing and doing so well in school. Kristi, you can take a lot of credit for his successes.
Remember what I always say "Mr. Noah will accomplish things on Noah's time". I believe his speech will come in time. I too, want you to feel comfortable to share any of your feelings. Love you, Mom

Nicky said...

Hey Krisi..it is sooo okay for you to feel this way! It's great that you have accepted that Noah will be doing things "Noah-style", but acceptance does not mean giving up hope...and what do we have if we don't have hope?

Nicky said...

KRISI? Say what? My my...so sorry for my typing error!

Kristi said...

I haven't given up hope. I will always be hopeful no matter what. You are right Nicky we have nothing without hope.

Jacqui said...

I know that other parents and kids have it worse than us with RTS kiddies, but that doesn't mean that sometimes our journey is really hard. Nor does it mean that we should ignore our unhappy feelings - in fact we should do the opposite - acknowledge and find a safe place to verbalise those feelings and thoughts. Which you are doing! That is the only way we can work through them to enable us to focus on helping our kids become all that they

You are certainly not alone in not knowing how to handle the unknown. It is frightening by the very fact that it is unknown. So I don't go there. It is like a bottomless pit of fear for me - so I just don't let myself dwell on it. I ask God to help me keep my thoughts on the present and that which I can do something about. I have to trust that He will give me strength and strategy to face whatever the future has to offer - because He really has done that so far. If I think of all I have been through with Matt, and if someone would have been able to have told me before Matt was born that I would have to face all these issues then I would have said NO WAY I CAN'T. But we have! ANd so have you! And you will be able to face the next challenge to - you have amazing depth of love for Noah. That will carry you through the hardest of challenges. Strength to you!

angie said...

Kristi, I just wanted to let you know that you are not alone....at all! Please post these thoughts and fears because it is very good for you to let it out, and it is good for me (and others) to know that we are also not alone...and we can help each other through this difficult (yet rewarding) journey. When Em was Noah's age I had a really tough time with the unknown, and I still do in so many ways...they are just different ways now. When Em was 5 and started school she had the speech of an 8 month old. Now, she is almost 7 (next month), and in May her speech tested at a 5 year and 9 month level. When Emma did start talking....it just came SO fast! However, even if Noah does not ever verbalize (which I think that he will), if he is signing and using picture systems with success, then I think that he will just blossom and be able to communicate very efficiently. It's tough with our kids because they really do have so much going on in their brains, but it is so difficult for them to get their point across. They are SO smart!

I know that I am babbling, but ultimately for me at the stage where you are with Noah, I just knew in my heart of hearts that Emma WOULD talk eventually. We went through many speech therapists who didn't believe that she would....so, I would show them the door. I just knew that everything else came in time and talking would too, and I was right. Now, I know that it doesn't happen with all kids, however, regardless if the actual talking comes or not....his ability to express will come.....and people will be able to understand what he is thinking and what his wants and needs are.

Have I helped at all? Just know that I am here for you....and you are definitely not alone in this journey.

Hugs to you my friend:)

Sarah said...

i've not dealt with RTS but I have a special needs child. He was born with and has battled multiple cancer diagnosis his amazing 14 years of life. I hate the unknown that this life gives however I have also come to love the unknown. Because I don't know what the future holds I have learned to enjoy each and every day with my son. To appreciate the small things that so many other parents take for granted. I'm with you, it is so hard, the unknown is extremely difficult and scary. I'm sorry you have to go through this but I hope it helps to know your feelings are normal, it's the situation that's abnormal :)