Sharing stories of fear, frustration, hope and acceptance

Archive for January, 2012

You CANNOT Have My Child!

You can NOT take my child from me. You leave him as he was, finally on his path of progress. He was Signing and growing happily as slow as it may have seemed. He was sitting, self feeding and standing, showing off to the therapist who have helped him along the way. You can NOT have his smile don’t you dare mess with his face! YOU CAN NOT have his vision its his only means to communicate! YOU WILL NOT TAKE his courage nor will you damage his strength. Get away seizures PLEASE go away. He’s my baby, he’s my fighter and he’s put up such a fight. Please leave him in peace not just for the night but for the rest of his life.


My Little Black Notebook

I woke up this morning asking God to help me through whatever today brings. I’m tired, I’m sad, I just want to rip all the tubes out of Adam and run away to the beach with him! (Santa Monica is about 15 minutes away).
My note book looks how I feel.
The black tape that keeps the pages together is not so sticky anymore. The writing on the front is fading, the pages are wilted like it got all wet- a little from tears, a little from being left on the wet counter. I don’t know what I’d do with out that note book I cling to it like I should a Bible. As soon as the doctors come in I immediately panic if it’s not in my hands. I don’t want to miss a thing, I have questions that need answers and terminology to learn.Thank God my mom, mother in law and sister are coming with my other son Frankie. Having company here really helps. More than I thought….

A special Thank You to “My Hubby,” for looking out for me and dragging me out of this ICU for fresh air and walks.


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 ↓

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:
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
(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.


Get What You Want From Your Doctor

As Adam’s advocate I have found that the one secret to getting the resources he needs depends on the vocabulary or terminology I use.
So here’s a tip for parents.
Find someone or go online to help you learn the terminology they are likely to use. Before going to any important appointment or doctor consult have a list of terminology prepared or memorized. If you hear a word used repeatedly write it down, look it up. So that when you talk to this person or team again you will seem more informed and be taken more seriously therefore increasing the chances of getting what you want from the meeting or encounter.

For Example, Adam has epilepsy, he has been hospitalized for two weeks.
During this stay I learned that:
twitch, spasm and jerking are each used differently.
Jerking is the most visible, forceful movement. This can be seen in Grand Mal Seizures.
Spasm is a less aggressive movement and is a little slower (still repeatedly). Twitch is quick tiny movements.
I also learned that the term “rhythmic” is code word for sure sign of seizure (at least for this neurologist). So to explain a movement that you believe may be a seizure describe the area, the style of movement and the duration.

You could say for example, I saw _____’s left arm start twitching at 9:30. It turned into a (heres the helpful terminology) more rhythmic pattern and eventually a jerking movement. This went on for ___mins.

Side note: here is more seizure vocabulary

Clinical Seizures: May be used to describe VISIBLE seizures/ symptoms.

Sub-clinical: seizures that occur in the brain and DO NOT show visible body movement.

Status: status epilepticus (SE) is a life-threatening condition in which the brain is in a state of persistent seizure. Definitions vary, but traditionally it is defined as one continuous unremitting seizure lasting longer than 5 minutes,[1] or recurrent seizures without regaining consciousness between seizures for greater than 5 minutes. It is always considered a medical emergency.

Postitcal State: the resting stage that follows the seizure. The person is extremely exhausted and requires rest.

It’s sad that hospitals and doctors function this way, I worry for parents who may not have the ability to advocate for their children in such ways. If you have any tips or suggestions please feel free to comment.


Anything But Hard

This is______.
Fill it with any word….. but “hard”.

This is..
a struggle,
a challenge,
a concern,
a scare,
I will allow myself to use any word but hard. That word seems to have some kind of power over me. It sneaks into my mind like a subtle stutter. Than before I know it, it’s replaying again and again like an evil record. It causes a domino effect of worry, than fear than doubt and before I know it my faith is shaken and I am a mess. I can not afford to allow this word to interrupt my mission. Its amazing how one word can determine the whole outlook of the day. We all have some word or phrase that triggers pessimistic thoughts. Find yours: defeat it.



Mother and Child: (counting our blessings)


In the hospital there’s a place called the”Quiet Room” that is available for parents to go to when they need.
In this quiet place is the glass statue you see. It’s called “Mother and Child”. Next to this peaceful and tranquil beauty is a shelf with many scrapbooks. I randomly chose one and turned to the middle to find that each colorful and decorative page was a tribute to each child that has past away in this hospital.
It brought about the urge to reflect on my life as Adam’s mother, the ups and downs, uncertain diagnoses, profound hearing loss, ASL, the hospitals and illnesses, faith and fear, fun and friends, Cerebral Palsy and therapy. All of these things I will gladly except if means I can continue to be mother to this child. The thought of my life without my children is unimaginable. When I conceived my husband and I unknowingly chose the path less traveled. However; we have gladly and lovingly except this challenge.




Snow Day Fun