Monday, March 23, 2009

Gavin's Voice

I'm quite sure that all parents, from time to time, sit and wonder what their child(ren) will become when they grow up. Will they be productive and kind citizens? Will they go to college? What profession will they choose? Will they know and follow God? Joel and I sit and talk about these things concerning our boys.

Our older boys aleady have some ideas of what they plan to do with their life. Jacob says he may or may not go to college and that he wants to be an actor or a stunt man. (I know...he has big dreams. I think that I read that only 1-2% of actors actually earn a paycheck, but at least he's thinking about his future.) He says he'll probably get married and have children, but at the moment he claims that he doesn't even like girls! ("They are annoying and not very nice!") Nolan has a desire to become an astronomer. He loves reading books on space and knows a whole lot more about it than I do! He is still weighing his options on who he'd like to marry, but says it's definitely in his plans! As for Caleb, he thinks that he has his whole future figured out! He plans to become a plumber, Get married to a certain young girl in his kindergarten class ("Because she is really nice and has pretty hair."), They will have 2-3 children and name two of them "Patrick and Sally.", They will go to the church that we go to now and his children will attend the school that our boys go to. He's so cute! Anyway, parents and children all have dreams of what the future might hold.

This brings me to my hopes for Gavin. What will the future hold for Gavin? His past has been littered with plenty of suffering. The present finds him doing better than many ever expected, yet still unable to do much of anything. As a mother, it is so heart wrenching to want so much for your child and not be able to do anything to change the circumstances! As a mother, I wish that I could feed him. (Mothers have a strong desire to feed their children! Jacob participated in a 24 hour fast this weekend, to raise money for a mission project and it actually made me sad to watch him not eat, while the rest of us were able to! He really wanted to do this and we were proud of him for doing it, especially knowing how much this boy loves to eat! Still, it was hard for me as his mom.) Anyway, I would love to be able to feed Gavin by mouth, but it's just not possible for him right now. As a mom, I would love to be able to watch Gavin sit up and play with his toys and find pleasure in things. I often feel so guilty that the only pleasure I can really give him is to snuggle him, kiss him and talk to him. He IS a happy little guy, but being a mom, you want to be able to give your child so much more than that!

So, what does the future hold for Gavin? Will he ever sit up, walk or talk? He may sit up one day or be able to say a few words, Lord willing, but the ability to walk seems like a dream that will never come true for him. He will likely live with Joel and I until we can no longer care for him ourselves. He will likely never get a job or even be able to dress himself. He may never eat by mouth. He may never have the ability to do anything for himself. He may never have a voice for himself.

This is part of the reason that I come here to type my feelings and chart my days with Gavin. I am trying to give a voice to Gavin and many like him in this world. (That is why this is called "Gavin's Voice.") I am normally a very private person and actually feel somewhat 'naked' sharing so much with all of you. And yet, I have such a strong desire to do this for Gavin! I am his voice and I may be the only voice, here on earth, that he will ever have. I also come here for my own well being. It has been wonderful getting to know others through this site and finding support from so many. And, it's been a great way to ask for prayers for Gavin and to get things off my chest. But, primarily the reason for this blog (in my mind) is to give a voice to someone who is not capable of giving one to himself.

I pray that those who read my words here, come away feeling more compassionate for those with special needs. I pray that they are kinder to those who aren't capable of giving or taking. I pray that they are kinder to those who are having to walk in the shoes of a caregiver. I pray that they see the love that is felt and given and know that these children or people are here for a reason and have a purpose! I pray that they see God's hand in all of this and that without Him, our days would be so much harder than they are. I pray that they will look to God in their times of suffering, and know that He is a loving God and that He has a plan for all of our lives.

As a mother to Gavin, I may not be able to do that much for him and I may not be able to do anything to change what his future holds, but I can give him love. This I can do without even thinking. I would do anything for this sweet boy! I will stand up to those who are ignorant. I will fight for his rights and comfort. I will be a voice for him, even when I sometimes feel my voice is very weak and I am uncomfortable being that voice. I will love him with all that I have, even if that means giving more than I have to give! After all, God gave me life and the ability to be this voice for Gavin. And, He gave me a great gift when He gave me Gavin!

My other boys may be able to tell me that they love me. They may grow up to do great things and to make Joel and I proud. They may teach others about God and hopefully follow Him with all of their heart. I pray that this is God's will for their lives! Gavin may not grow up to do so many things, but the fact is, he has already done all of these things, just by being here! Thank You God for Gavin! And, Thank You for sending others like him, to teach us so many great lessons. The greatest lesson of all.....Love!


I tried to download a video of Gavin using what voice he does have in this world, but being computer illiterate, I wasn't capable of figuring it out. So, here are some pictures of Gavin using his voice and 'talking' to us. His voice is truly the sweetest voice that my ears have ever heard!








"A man's heart plans his way, but the Lord directs his steps." Proverbs 16:9

15 comments:

Cammie Heflin said...

You do great job being Gavin's voice! I feel the same about Addy's eating too. She really has no desire at all to eat. I really want her to be eating by the time she goes to kindergarten but I have just decided that I should just be thankful that in this day and age Addy is even going to kindergarten! Who cares what she is able and not able to do, she is my daughter and I love her more than anything, just as you do Gavin!

Jessica mommy to Alex/ RTS said...

I love coming here and reading about your family, and sweet Gavin.
I remember before I could feed Alex watching other babies suck on a bottle seemed so easy for them, but Alex couldnt do it. Now he is doing great! But you are right mothers have SUCH a strong desire to feed their children, it is really hard not to hear the sucks, and swallows most moms get to hear. I to do not know if Alex will talk using words, this was a hard pill to swallow, but having the support of so many other moms going through the same thing, has totally changed my perspective.
Thank you for being vulnerable enough to share, it has helped me so much!

ruehshouse said...

You are such an inspiration to me. I dont talk about what goes on in my kids life because I cant due to there situation but I have to be there voice to. If I dont tell the lawyers and caseworks and judges what is going on with them no one will. Because of you I keep going everyday knowing i'm making a difference. Those boys couldnt have 2 better parents--all the parents need to learn from you. Your the best--

Love you lots--April

Lacey said...

I love how he opens his mouth all the way when he talks. Our boys have so much in common,while other DS moms are trying to get their 3 year olds to walk or potty train, we are trying to get ours to hold their heads up and roll over. We have the extreme end of DS kids, but they are gorgeous and have a fullfilling life. I just had that conversation today with his hemo doc. There's a chance he will need open heart surgery soon, and I'm afraid they won't do it. I'm glad I have a pediatrician and hemo doc to help me fight for Jaxson to get the medical help he deserves.

Anonymous said...

Alicia & Joel...Gavin is a beautiful child who continues to teach all of us the most important things in life! (You're doing a wonderful job raising all your children. You can be "very" proud of all of them!) Gavin is in the best hands, and you do a great job speaking for him. By looking at all the pictures in today's post, I can hear him loud and clear! Thank you for sharing your thoughts and feelings about everyday life. I always look forward to coming to your blog. Please know...we are all better people because we learn so much from Gavin.

Annette Gysen said...

We're publishing a book at my company called A Different Dream for My Child, and your family's experiences certainly have been influential in getting it published. It's a long story--but the author approached us just after Gavin was born, and there were some here that were concerned that there wasn't an audience for it and that we shouldn't publish it. I (and others here) told them that wasn't the case--based on what I was learning from you. I will be sure to get a copy for you when it comes out. I've read only parts of it, but what I read was excellent.

So among the many wonderful things that have happened because of Gavin, there will now be a devotional book for people who are going through challenges like your family's and Gavin's.

Every life is so valuable, and sometimes we get to see just how valuable when God so clearly uses that life to touch others--like Gavin. I can't wait to celebrate his awesome life with him and all of you someday when we're all in heaven, when we will get to hear him talk and see him run!

Annette Gysen said...

Alicia--

Read your comment :)! It is so hard to remember our future promises, and so many times, understandably, we want what we'll have then right now. I worked on a book about heaven where the author explained that we have these longings because we really weren't made for this world--they show that we're made for another world. And I just realized--just now--that Gavin was ultimately made for another world, which is why he'll have SO MUCH to say to us. I can't wait!

The Myers said...

The Vander Wall Family,
I agree with you there on how people treat others who have a disability. They can be very cruel and I wonder sometimes how they could do such a thing. I was brought up to respect them and not call others retarded or any words like those. I had a sister I never knew that had spinal difadia and was syndrome also. I also had a cousin who was like Gavin who had a very small voice too. So I respect you for all you do for Gavin and keep up the good work.

Amy said...

*sniff* Way to make me cry at work, sissy!

You have given Gavin the best voice - and gift - of all with your love and devotion to his health and life. I've never been more proud of you, and will not cease to be amazed by your strength and grace. I know days are long for you sometimes, especially when you allow yourself to focus too far down the road. However, you should know that you (and Gavin) bring so much to those of us who might not be able to learn this important lessons firsthand. I know that since Gavin was born, I've been able to see life much more clearly, appreciating not the big things, but the little things we sometimes take for granted. Thank you for exposing yourself when it's not always easy to do. (((HUGS)))

I love you all!!

(Auntie) Amy

connie said...

Something about reading this today, makes me wish we all lived closer together. I'd love to gather you, Jessica (Alex), Cathy (Annabel) together for tea and some talk therapy. Or maybe at Laurie Lloyd's home for some coca cola therapy!

Lacey said...

Hello friend. I actually never made it to nurse. I was a CNA, but working at a hospital I did a lot more stuff,everything the nurse did except give meds. When I was little I wanted to be a doctor. I was always wrapping my dolls broken bones and giving shots with my grandmas old broaches. Then I wanted to be a paramedic, it wasn't until I had my first baby that I decided I wanted to be a nurse. But I never got that far because I had Jax. But I love medical stuff, my dad bought from a garage sale medical students books, and I would read them from cover to cover, it fasinates me.

Lacey said...

Your going to die when you hear this. I had a doll that was big, and I used to wrap her up like they did when they pulled baby Jessica out of the hole. Do you remember baby Jessica? I used to wrap her head and body up like that. Yeah I was a little wierd

HennHouse said...

And what a beautiful voice you give to your beautiful boy. I am touched every time I come here.

Lacey said...

Wow, it sounds like they had the exact same injury. Being that dehydrated causes their glucose to drop so much. But they told me it wasn't a stroke, because it wasn't a bleed, it was lack of blood flow from the low glucose. Otherwise known as a hypoxic brain injury.

Inspired said...

First, Caleb is TOO funny! Love that he has it all figured out. He's way ahead of most!!
Second, AMAZING. You, your family, Gavin. You are all such an amazing individuals and make quite an amazing family.
Last, I'm so proud of the Voice you have given Gavin!!! You certainly have done him Justice and he would be proud of the way you represent him.

Love,
Julie