by Sarah | Nov 18, 2010 | All About Denver, Crap, Cystic Fibrosis
Yesterday I posted about it. About the nerves I’d be living through today. About how our ‘perfect’ boy was so perfect that he faded into the background in the complication of our girls chaotic needs and schedules.
Until today when he got his sweat test done.
The test went smooth, he sweat like a champ. She told me the results would be faxed over to my Doc’s at which point I stopped and raised my eyebrows in surprise. I asked why we wouldn’t have the call back number because our ped’s office closes at 4:30 (when the results are released).
The tech, who remembered us thanks to Angel’s seven sweat tests, said that when an outside doc confirms there is no phone call…it’s special to the pulmonology department. But, also because she knew us, she did us a favor…she put a note on to put his results into the system because she knew I’d worry after Angel.
We came home and the rest of the day I was pretty okay. Just a little anxious, but overall not bad.
Then Brandon walked in the door after school. 40 minutes before it was okay to call for the results.
The minute he walked in the door my heart twisted, leaping into my throat, pounding, shuddering.
I had forty minutes to wait.
Forty. Long. Minutes.
But I already knew.
But I tried to cling to hope.
Promptly at 4:30 I dialed the number. I entered his patient number. I prayed. I hoped.
“Please call our office at…”
I burst into tears.
I know that system well. If your results are negative, they say NEGATIVE. They don’t tell you to call.
After several minutes of panic I called the pediatricians office and in HUGE relief someone answered. I asked if they’d received the fax. The nurse got on the line, telling me that my ped was out of the office until Monday….BUT, since we’d already been through it with Angel, she told me the basic results.
On the CF scale, for sweat chloride levels, the “negative” numbers are 0-39PPM.
Brandon’s levels read at 42.
Low…but in the positive range.
Our regular pediatricians partner called me to fill me in further.
They aren’t calling it CF – because they can’t. With numbers that low we have to re-run the test (much to Brandon’s disappointment, the electrical current really bothered/stung him).
But we’re getting an appointment with Angel’s Pulmonologist.
There will be more tests.
Nothing is officially official.
But ‘Redefining Perfect’ just got even more complicated.
by Sarah | Nov 10, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Lost. Shivering. Hazy moon is doing me no good.
My baby is sick.
And I didn’t even know it.
Today was Angel’s regular CF clinic appointment. Outside of our visit last month for a cough that proved to be nothing much, she’s had no symptoms. Her appetite has been great, no lethargy, no tiring easy.
I was expecting nothing.
Until we stepped into the room for her functions, and mother’s intuition kicked in again. From her first breath into the machine I knew. There was a problem. Her breath wasn’t spiking up as high as it usually did. Breath after breath was low. I got worried.
The Fellow came in and examined her and didn’t seem concerned outside of her very low functions. Then she went to get the big guns, the pulmonologist. First word out of the main doc’s mouth was x-rays.
What it came down to is once again we are on the edge. The precipice of what could happen. Our Angel has taken us to this precipice many times over the past year. We’ve been ‘threatened’ with hospital time if she doesn’t bring up functions, or one thing or another.
Every time she succeeds in beating the challenge.
Every time I spend a month worried that she won’t.
This time it’s one month again. Her functions must improve by December 15th or we may be seeing her first visit to the hospital at Christmas time.
For 3 years I’ve been sitting on the edge. Waiting for the first big illness. It hasn’t happened yet. I’m not wishing it on her, I’m not wishing it on us. I’m just tired of wondering when that shoe is going to drop. Figuring out how we will handle it. Worrying that we won’t manage.
I hate living like this.
I hate this illness.
I hate worrying that every little cold will be the big one.
I hate that my baby can be so sick and I didn’t even realize it.
I hate that her atypical form gave us three years of hope before dashing it with the help of Pseudomonas.
I hate having to force aside the fear and worry just to live each day with a bit of normalcy.
I hate the month to month.
I hate that for a few moments each day my absolute love for my baby is eclipsed by fear, worry and pain.
by Sarah | Oct 6, 2010 | All About Learning, All About Molly, Autism
Over the past few (difficult) days, my mind has been lingering in the past. Not the long ago past, but just a few months ago. Before the sometimes-daily struggle for calm that exists now.
Back when there was a balance and a quiet routine to the day.
Not structured…by any means (something I need to start soon)…but routine.
Sibling rivalry existed, but not in the extreme sense we have now.
Fits were had, pouting and hiding in our room fits, but not so often.
Craziness occurred, but in fits and spurts not constant.
Nothing was ‘perfect’, but we were content in our days, in our everyday world. The group of kids in our neighborhood, while older, were known to the girls, and so Riley felt comfortable playing, laughing, cheering and screaming with them. She felt safe. We felt safe.
Now in the world of unknowns, constant change, and fighting to keep our heads above water I linger in the past. If only to get me through the current haze of extreme behaviors erupting. New and sometimes unnerving behaviors. We’ll deal with them all as they come…but sometimes it’s easier to disappear into the ‘then’ than it is to live in the ‘now’.
***
Update: In the efforts being made to move Riley to all-day Kindergarten the Special Services director said the word we’ve been needing (and dreading) to hear: Autism. In order to facilitate her move they are taking many steps, including consulting the ‘Autism Specialist’. We haven’t had our IEP meeting, but this confirms that they are heading in the direction we’d expected, and down the line steps will be made. It’s both good and bad…Good because having a psych say it will help us get the state assistance we need…bad because even though we’ve “known” for a long time…confirmation is always hard.
In the week since we’ve made the decision and tried to start prepping Riley for the change to all-day kindergarten we’ve been dealing with some extra chaos and thus this post. The switch, no matter how fast we rip off that bandaid, is not promising to be smooth.
by Sarah | Oct 1, 2010 | All About Learning, All About Molly, Autism, Cross Country
Earlier this week Archie got a call from the woman we’re working with in Special Services. She has recommended moving Riley to All-Day Kindergarten.
In essence she’s saying “There’s something going on, she does have issues – but we wont’ give you an IEP or diagnosis yet.”
The reasons were….
1) All-Day Kindergarten is for children that “need more attention.”
2) All-Day Kindergarten would give her more time in the day to evaluate her.
3) All-Day Kindergarten would give Riley more time to adjust to her day and settle in before it’s all over.
4) All-Day Kindergarten has a smaller class size – less chaos, more individualized attention.
All valid points. All reasons to go for it.
But then there’s…
1) All-Day Kindergarten lends toward more chances for Fire/Tornado drills (oh won’t that be fun).
2) All-Day Kindergarten means lunch. Riley can’t handle the chaos of snacktime in a classroom – you think she’s going to handle lunch in a crowded cafeteria?
3) She loses her comfort zones – her teacher and her best friend J.
4) All-Day Kindergarten means all day. Means behaving to the best of her ability all day. Means putting all that effort into being good at school – what unholy hell will we be unleashing upon ourselves by asking her to do this?
****
Well, we’re taking that risk.
I’d be lying if I said the thought of All-Day Kindergarten didn’t scare me on a number of levels…
But the thought of them having more time to evaluate her and getting this all out of the way is what’s holding me together. I still am not confident in the school’s ability to get this done – but at this point it’s our only hope. With the changes in insurance, getting her evaluated at the hospital is totally not in our pocketbook’s reach.
(And yes, it totally pisses me off that because of sh*tty insurance we have to rely on the school for Molly’s evaluation and diagnosis…and no, the geneticists diagnosis is NOT enough for us to get the insurance assistance we need. I’ve tried it before. We need one from a psych…thus we are dealing with the school…but that’s a totally different post that I won’t write for many reasons.)
by Sarah | Sep 18, 2010 | All About Denver, All About Kennedy, All About Me, All About Molly, Cystic Fibrosis
Day 06 – Something You Hope You Never Have To Do
My biggest fear day in and day out.
I hope I never, ever, have to bury one of my children.
I hope that Brandon, destined to drive in just a few years, finds and uses common sense. That he has the same instincts I did to never use drugs, to not drink until he’s older. That nothing happens to mar is bright future.
I hope that Riley far outlives and outshines me and her father. That none of her issues cause her problems. That she grows to be a proud and strong young woman.
Above all I hope for a cure.
That Angel never has to wait for a lung transplant to save her life. That she doesn’t have to live her days hooked to machines that force breath into her failing lungs. That they find a cure for even her unique a-typical form of this horrible disease.
I never want to bury ANY of my children.
Yet daily I wonder if I will have to.
I hope to the heavens that I won’t ever face that.
by Sarah | Sep 3, 2010 | All About Erik, All About Molly, Autism, Crap, Fatherhood Fridays
This is not our first Fatherhood Friday. It’s just been a long time since Archie stepped up to this plate. I asked him to write a post on this subject, and have asked him to try to continue writing posts as time/inspiration allows. It’s always nice to get the other perspective from time to time 🙂
I’m writing this for a second point of view on our concerns for our daughter who has just started school.
I would like to say first of all that although my wife and I don’t agree on every aspect, I love her and respect what she has to say. No exceptions. I love our kids the same way, with no exceptions. Maybe I love them in different ways than each other, but no more or no less than the others. This will be about our middle child, Riley.
I knew the day would come where Riley would be old enough to go to school. My wife championed homeschooling, while I am a public education proponent. We both had sound logic in our choices, but eventually one of us would have to give way. Being small and comforting, the h/s milieu would provide stability and support as well as routine for Riley, as she loved things to be repetitious and consistent. Public school would give her interaction with other kids, lots of them, and would help her to mainstream, just be a standard kid.
By sheer persistence, I wore down Sarah to the point she would go along with me, albeit unconvinced I was making a good decision for Riley. So, she went to school.
Within the first few weeks, Riley lost her ability to remain calm. At school, the excessive noise(holy god, kindergarten is insanely noisy), the shuffling of many small bodies, the closeness of the setting, and the newness of it all burned through her coping mechanisms like wildfire. She literally hasn’t any defenses left. Any accomplishments she might make, are made nil by erratic behavior. She is suffering, trying desperately to keep from drowning, while the waves are just getting bigger.
At home, Riley isn’t much different. At times, she is silent, inconsistent, demanding, inconsolable, loud, and will take her stress out on the rest of us without warning. Those are a lot of harsh adjectives to describe my sweet, little girl. Make no mistake, I love my Riley more than the human heart is actually capable of handling.
And that was my downfall. I so wanted the “perfect”, “normal” life for her, that I became blind to who she was becoming in her own right. Before school began, we had a little girl, who despite being diagnosed as autistic, was capable of emotions and moods in the range of everyone else. Yes, at times she was a pistol. And there were some problems we were not capable of handling. But she was the best little girl she was ever capable of being, and more. And I overlooked it.
It’s easy to see where I went wrong, because I just wanted the best for Riley and didn’t want her to be burdened with the struggles I encountered at her age. But she isn’t me. She is her own, beautiful little person that has her own path to make. We will find the best way for her, with her as a guide to help us make sure we keep her first and us second. And her sister is coming along right behind with other special issues that will need to be met. So, this will help in the long run.
But I have the guilt of betraying my daughters faith and trust in me, I let her down. And I also have the guilt of letting my wife down by not listening to what she was telling me. As a parent, we all silently beat ourselves up over things we do to our kids that we wish didn’t.
So, here I am. I’m sorry, Riley, for not keeping you first and putting you in bad situation. And I’m sorry, Sarah, for not being the husband and father I should always strive to be. But, I promise to do better. I love you guys.
****
*Must note – the picture above is a meld. On the left is Archie as a young boy, on the right, Riley.
Yesterday I posted about it. About the nerves I’d be living through today. About how our ‘perfect’ boy was so perfect that he faded into the background in the complication of our girls chaotic needs and schedules.
