Sharing stories of fear, frustration, hope and acceptance

Archive for the ‘Gratitude’ Category

First Steps

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It’s a time of “firsts” all over again.
First stroller outing, first bath in the bath tub. Each day is a chance for something new. It’s hard work with no pay check or vacation time. I try to pace myself and remember that he did not become this way over night and he will not get better over night either.

It’s hard to ask for help but thanks to my family…They show up and just help with dinner or dishes or laundry or dr. appointments
I love you guys. I could NOT do this by myself. Thanks for all the prayers. ❤

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He looks like: Mom don’t take the picture- don’t do it. 🙂

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A Special Prayer

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Dearest Lord,
Teach me to be generous.
Teach me to serve you as you deserve;
To give and not count the costs, to fight and not heed the wounds; to labor and not ask for reward, except the reward of knowing that I am doing your will. Grant me Your peace through out the day.
Amen

Adam continues to slowly improve.
The doctors are using the word “Home” more often.
🙂

Live Your Way to the Answer

I beg you… To have patience with everything unresolved in your heart and try to love the questions themselves as if they were locked rooms or books written in foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. The point is to love everything. Live the questions now. Perhaps someday far in the future, you will gradually without even noticing it LIVE YOUR WAY TO THE ANSWER.
by: Rainer Maria Rilke

A Question: What will Adam’s quality of life be??

An Answer: Who am I to judge the quality of ones life. I am living my way to this answer and I am sure that Adam and God have much more to teach me.

Adam’s Neuro Surgeon described
Adams journey perfectly, “He is on the slow boat to China, but he can make it there.”
As ill as Adam has been his spirit, his soul, his personality bursts through.He is not one to surrender to illness easily. He leaves me with only one choice….. KEEP ROWING 

Simple Things

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ADAM IS LOOKING AT HIS GLOWMATE LIGHT IN A MIRROR HANGING ABOVE. It changes colors 😀

What is the TRUE meaning of life?
What REALLY matters after all is said and done?
I have asked myself questions like this hundreds of times.
THE ANSWER: it’s the simple things that matter.

Today Adam was more awake since his second brain surgery (hemispherectomy). He actually moved his Left hand a lot. I think I saw a tiny smirk of a smile on his right cheek. He even made eye contact with me for a second. His progress is steady, he only had two seizures since the surgery and the UCLA Neuro surgery Doctor Mathyrn said it could be because he is withdrawing from the versed (seizure medicine). He was put on this before surgery because he went into status. He started at a dose of 3 and now he is at .05.
The weening process has been soo slow- almost there.

In the meantime among all the complications and uncertainty I try to remain patient and continue to find reasons to appreciate the simplest of things like…. The taste of food, basic mobile abilities, the sun on my back, the smile of a loved one, or the touch of a hand, or a phone call at the very moment you feel alone. Yes indeed it’s the simple things that matter and I hope I never forget or lose this new found appreciation.

Happy BIRTHDAY Frankie!

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Happy 7th Birthday to Frankie!

Dear Frankie, your birthday is coming and I just wanted Nana to help you see
this special message just for you.
You are a good boy, you do great in school, you are a nice and caring friend and I am glad we are having your birthday party on Wednesday because I couldn’t wait for you to get cake and presents. So, continue to be a good boy.
Love Mom

LoVe for AdAm <3

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“Any person who acts out of love is acting for God. There is no way to repay such acts, except perhaps to pass them on to others.”
– Martha Beck

Since Adam was born we have collected pictures of the nurses, doctors, therapists, and teachers who provided him with extra-special support.
We want to show him one day when he’s older all the family and friends who have shown him love and encouragement. He will know that many people worked and prayed very hard to heal him, strengthen him, teach him, and guide him. He will know that many have LOVE FOR ADAM.

He will know that on Saturday many showed their LOVE FOR ADAM. We will tell him about all the people who came, (people who don’t even know us) came to show that they care and wanted to help his father and I out so we could be there with him in the hospital.
We will also remind him with the photos that NO MATTER WHAT challenges or disabilities lie ahead: God never leaves you alone just look at this whole community of people who LOVE AND ACCEPT him just the way he is….

May GOD BLESS all the people who have taken time out of their lives to help us or pray for us during this challenging time. You have lifted us and strengthened us with out expecting anything in return. We are forever grateful and we plan on passing the love on to others…

Thank you for showing
your LOVE FOR ADAM,

The West Family

Today Is All That Counts

deafchildrennear on January 26, 2012 at 12:17 pm said:

Your blog brought me to tears. My 2 year old son is currently in a PICU because of seizures.. He has delays and doesnt walk yet either.. Today I was walking in the hospital and I saw a little 3 year old boy walking with his mom getting in her way and skipping around. I was like you, my heart yearns for the day when I do that with my son. How relieved I would be to help him reach such goal. I understand how you feel about questioning, “why can’t we be the ones who are allowed to take it ( what ever it maybe) for granted???” My heart goes out to you and your family- you are NOT alone and thank you for sharing such a beautiful blog. You remind me the importance of making each individual moment count.
There is a helpful saying I’ve heard, it’s not the destination that counts its the journey….

Reply ↓

threepuzzlepieces
on January 26, 2012 at 1:28 pm said:

I know what you mean. I felt like such a terrible person giving other babies the “stink eye” just because they were healthy and walking. My husband used to jokingly whisper in my ear, “you want me to kick that baby for you?” Obviously a joke, and really awful, but really, how dare they parade their healthy kids around in public like that! My daughter was finally able to leave her walker behind just about 2 months ago. She’s still pretty unsteady, but it is amazing, it just took a lot of work.

I can tell from reading your blog that your son has an amazing mom. He will be okay. And so will you. We’ll be praying for you.

In the meantime, there’s a blog written by another autism mom, but every once in a while it applies to all of us. Not sure if you’ve read this one, but here it is:
http://adiaryofamom.wordpress.com/2009/05/01/welcome-to-the-club/
We’ll be praying for you and your family. Hang in there. Hugs.

This is Erin’s post titled Perspective. You can find it at threepuzzlepieces.wordpress.com
(hopefully I copied the link right. Still learning). Her post led to the previous comments. I would like all mother’s to read. It is definitely a tear jerker- but it is a reminder to us to stop and enjoy our children TODAY, IN THIS moment because you never know when things will change.

God puts rainbows in the clouds so that each of us – in the dreariest and most dreaded moments – can see a possibility of hope. ~Maya Angelou

I remember the haze of last spring. The fog of fear that seemed to cover every thought, word and action. I remember how lonely it was. I was afraid to even talk about it, even with my husband, for fear that saying it out loud would somehow make it more real. I explained some of this in a previous post here.

The doctors believed that they had found a diagnosis for Mary. Something called ataxia telangiectasia. A progressive and fatal disease that would see my baby girl in a wheelchair by the time she was ten, and in a grave before she turned twenty. The disease would steal her ability to walk and balance, and it would slur her speech. It would then give her cancer and a sensitivity to radiation that would make treatment of the cancer extremely difficult. If the cancer didn’t kill her, then she would likely die from pneumonia after catching a common cold from a sibling or friend. This is what the doctors were telling me. This is what they believed she had. In order to get into the special clinic in Baltimore at Johns Hopkins, she would need to have the genetic testing completed. So we waited for the results. We waited for two months.

Suddenly, the little things really didn’t matter any more. A parent boasting on Facebook about what grades their child got on their report card, somebody’s soccer game, a spelling test, the latest makeup trends for spring, people’s plans for Easter. It all seemed so frivolous. Of course I pretended to care. I listened to the latest gossip with a painted smile. I was in a daze. I couldn’t talk to anyone about it. Other children in wheelchairs at the hospital caused me to gasp for breath. Healthy children running through the playground made me cry. I had a constant pit in my stomach. I carried my daughter with me everywhere, never wanting to put her down. I wanted to hold onto her forever.

I remember calling the doctor twice a week to see if the test had come back yet. The doctor had thought 4-6 weeks. By week two, I was a wreck. When week 10 rolled around I was numb. Finally, the Friday before Mother’s Day, the doctor called with the surprising result- “The test for the ATM gene was negative.” I remembering asking her to repeat and clarify herself several times. I felt like I was dreaming. I don’t think I realized up until that point just how certain we had been about this diagnosis. I don’t think I realized it until the huge choking sobs of relief erupted from deep inside my chest.

To say I want to go back to that time, would be a lie. It was, to be sure, the most torturous period of my life. To be able to even entertain the idea of a future for my daughter feels so much like the gift that it actually is. How many people get to understand just what a gift each day is?

There are times lately, when I have to remind myself what it is that we are working so hard for. After a long day of 7 hours of therapy for my youngest, on top of several hours of therapy in addition to school for each of my oldest two, it can start to feel overwhelming and frustrating.

I thought very seriously within the last few weeks of just stopping all the therapy, because for so long we have had a mindset of “today could be the beginning of the end,” so why waste it on therapy for the future when there might not be a future? The endless testing, the questions, the lack of answers, while frustrating and frightening, are starting to add up to one thing: a future. So the question comes back, why waste the time on therapy? The answer, because it finally looks as though my baby girl has a future. Words and thoughts I wouldn’t have dared to utter only a few months ago. Something for which I am beyond grateful.

At the same time, I want to return in some small way to the very clear reality that we lived last spring. That every single moment was precious. During that time, I tried to reassure a close friend over email:

Whether or not she has this or something else, or nothing at all, the fact that they are looking is a blessing. It reminds us that every single moment we have with her and our other children is priceless. We have a hint, a warning, a reminder. That is a blessing that our neighbors did not have when they suddenly lost their toddler. There were things they might have done differently with him if they had only known their time with him might be short. L (Mary’s PT) asked me when we were planning on Disney World. I said not until Mary is older and more able to appreciate it. “Well, go now and go later.” Why not? We left the dishes the dishes in the sink the other day and just took the kids out for the afternoon. So we don’t get the back door fixed, or the house vacuumed today. Nobody regrets those things, they regret not spending time. So I have to look at all of this that way. It could very well turn out that all of these tests come back negative. Heck, we’re due to get these results around Easter- that’s gotta be a good sign, right? But whether we have 5 years or 75 years with her, we will know to cherish all of that time. That is the gift we have been given. And Mary has given that gift to everyone who has met her. People light up when they meet her, in part because of the spirit with which she meets her challenges. God is not doing this to us, he is doing this for us.

I remember writing those words, trying to convince myself of their veracity. I sobbed while I was writing it, angry that I should even have to have this kind of conversation. Why couldn’t I just enjoy my baby girl? Why did it have to be so damned critical that we enjoy each precious moment? I wanted to be able to just take it for granted, like so many other parents get to.

At the same time, it puts things back into perspective for me. Life can get so busy. We do forget to treasure the small things sometimes. It helps to be reminded.

We still haven’t taken that trip to Disney. Soon.

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