Delaney News

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Happy 3rd Birthday Delaney!!

Posted by Team Do It For Delaney on July 7, 2013 at 12:30 AM Comments comments (1)

As Delaney had her third birthday, it is only natural to reflect on how far she has come and how far she still has to go to live and fuction as a little girl instead of a baby. Most parents usually have the satisfaction of knowing that much of the reistance of the 2-year old is behind them. Their tremendous increase in vocabulary and facility in speaking that has taken place between ages two and three. Toddling has become walking, little hands are stacking blocks and self feeding and toilet training is a part of normal day life.

Even though Delaney can do very few of these things, we are very proud of what she has learned. And what a joy it is to see her smile, when she masters a simple task, or even one more step in a simple task. In her own way, she knows the satisfaction of effort leading to results. She can feed herself a limited amount, both with figers and with a spoon, though not enough for nourishment needs. Self-feeding is one of the goals of Occupational Therapy and we ( therapists and family) work on it every day. Her gross motor skills are encouraging. Using her AFO's ( leg braces) and her gait trainer Delaney can "step", lifting her legs alternately. ( with help to propel forward) She can crawl up a sequence of stairs, and has learned to go down a step backward. She likes to pull herself up to standing position, and cruises sideways using furniture. These are significant gains for our little girl!

Probably the area where progress is slowest is speech. She does vocalize when excited. A few consonants, but most are vowel sounds. "Signing" has been introduced in speech therapy, but will be difficult since Delaney's fine motor skill is very limited, with little control of the fingers. Speech therapy, is nevertheless, a big and important part of Delaney's life. Much of it is aimed at comprehension, and so far she seems to understand a few words such as more, up, come here, ball and hands to hands. An electronic communication devise may be useful in the future.

Socially, Delaney has always been a delight. She smiles and giggles easily, and eagerly observes and " absorbs" new people and places. She has her favorite things: her bath, her swing, her beads, Gram Cat's dog and any mirror. We thank God every day for Delaney, and for every day of the past three years with her, and for every good thing, every piece of knowledge, every technique, every therapy, and every kind, wise and skillful person who has helped her along the way. HAPPY BIRTHDAY TO OUR LANEYBUG!

"The greatest thing in this world is not so much where we stand, as in what direction we are moving." Goethe

Maureen Thomas :D



Giants game!

Posted by Team Do It For Delaney on May 6, 2013 at 11:50 AM Comments comments (0)

It was so nice of Uncle B to take Delaney, and Jacob (her cousin) to the Giants game. Daddy met them after work to catch some of the game. She loves being outside as you can tell. We have been blessed with such a happy camper. GO GIANTS!

Meeting new friends

Posted by Team Do It For Delaney on April 25, 2013 at 7:50 PM Comments comments (0)

We had a great time at Sweatin for Sammy on Saturday. We met this wonderful companion dog named Delta and her handler Pamela. Delaney loves dogs and it would be awesome to have a dog that could help Delaney. Too bad she isn't eligible until she is 5. I hope the girls can wait that long. We promised them we would get a dog when Delaney could walk so they have been really helping with her physical therapy. They are such great big sisters!

 

Working Hard!

Posted by Team Do It For Delaney on April 25, 2013 at 7:50 PM Comments comments (0)

 

Delaney is working really hard on the parallel bars with her Physical Therapist (Rachel) trying to get her balance and take steps. I didn't realize how much work goes into walking. Getting your brain to tell your body to move, coordinating all your muscles, shifting your weight and finding your balance. As parents, it's our job to tell our kids to never give up, but it's an indescribable sense of pride when our kids show us exactly how to do it. So, if Delaney can do it for herself, we should Do It For Delaney.

Loving a Child Who Cannot Speak

Posted by Team Do It For Delaney on Comments comments (0)


I have a daughter and she is nonverbal. It is one of the most difficult portions of my life. When the tears fall it becomes a guessing game. When we miss the mark of the needs the tears become screams. The frustration that mounts for everyone is intense. That screaming can last for what feels like an eternity. What ends it? Her resignation. She has no choice but to quit. Nobody is answering her need. Because we don't even know what it is.

Imagine all of your needs every single day and now imagine that you can never, not even once, tell one single person what you need. What a horrifying thing. Those dreams where you are being chased and you are scared and you try to scream for help but nothing comes out of your throat? That is her world. And we, as her parents, watch on in sheer pain and frustration. Just sign it!!! Just try to say something. Anything.

And she does. Every single day this brave soul yells out, makes sounds, tries. Not a single day goes by when she doesn't try. And her trying? It shatters me. I am her Mama after all and mamas makes things better. Don't we? Is there anything else that better describes what we do? We kiss bruises and skinned knees. We are the makers of magic and all wounds are healed by our touch.


But Me? I.can't.fix.this. 

I can't wipe away this pain for her. And the sheer terror I face every day at the thought that she can't tell me what is wrong, who hurt her, what makes her happy and that I will get it wrong is something that breaks away pieces of me every single day. 

Am I failing? No. I am not. 

Is she failing? No. Never.

It is what it is.

But you need to know how this hurts. There are people in your life who are going through this never ending grief. And they have learned how to blend in. They know how to disappear when they can't blend in and after a few times you stop noticing their absence. But they don't. They wear the guilt of escaping on their shoulders. The isolation adds to their pain. But they simply cannot take one more raised eyebrow from a stranger. Every day they are at the brink of breaking. So give them grace. 



Imagine sending your child to school or church and hoping and praying that nothing goes wrong. Imagine the stress of knowing that if something is wrong you, as the mom, will never know it. Wrongs could be committed at any moment and you won't know. The immense stress of wondering if you have chosen the right people to trust is never ending. If you are not with your child every waking minute, then that stress is with you. 

We parents of children who are nonverbal? We have every single one of us had this happen. Someone was cruel to our child. Someone was unfeeling. Someone committed a serious wrong to our child. And we caught it. Not because our child told us, but because we are these hovering parents because we must be. And knowing that we caught it strikes terror in our souls just at the moment we begin to relax. There is no relaxing. Not for us. Not now, not ever. 

And then you return home and snuggle your child and pull them close and tell them you love them. And you know you will never hear those words. And while they will snuggle you back you also know that time is precious and even in the middle of that loving moment the groaning may begin. Maybe you hugged too hard? Maybe they are uncomfortable? And it begins yet again.

You start guessing and you start getting it wrong. And at the end of the day everyone is hoping that tomorrow will be the day. Please let tomorrow be the day a grunt becomes a vowel. Let the groan become a word. Let the slapping become a sign. 

And it doesn't. Because this is permanent. It isn't going to go away. This is permanent. 
This frustration.
This fear.
This aching.
This grief.
It is a cycle. But it is permanent. 


And she never quits. This brave one? She owns me heart and soul.

So we try again. We get up and face the day. We encourage the yelling. Speak to us! Try again!! We smile with the laughter. We cringe with the grimace and hold out for that elusive hope. We learn that communication is more than words. And we learn to grant ourselves and those around us grace. And we learn how to fight better and smarter. We learn to change the laws, change the world. We learn to stand against discrimination.  And above all we know that love takes many forms. Love requires no words. It is an intangible, nonverbal force. 

And intangible, nonverbal?
That's our playground, ya'll. We own this.
We've got this!!






Written by Katie and couldn't have said it any better

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