The little bit of milk that she took , she often threw up right away in a big splash, either at
home or while in the car, or while shopping…= she was vomiting constantly. When Jenny cried for a little while, she
turned blue.
At the age of 6 weeks ( 01/2001) Jenny was hospitalized due to a very bad pneumonia. She was in
an oxygen-tent and was treated with antibiotic shots. After 3 days she got a little bit better and we could take her home
( incl. Oxygen- tank to which she was “attached” for a week).
Jenny did not develop very good. She was not a good eater. Still lot’s of vomiting. She drank
Gatorade by the gallon. Later the pulmonologist said: ‘ Ok= that’s where she get’s her energy from’
The doctor’s had absolutely no clue…and we always got the same answer “ … all normal
for a baby at her age …” or “ …we never had a baby with symptoms like these…”
Jenny cried a lot ( day and night ) = now I know, she had very bad stomach aches.
The next pneumonia came in August 2002. As an average, she was sick every 4 weeks, unless she was
on Antibiotics. The doctors advised us after this pneumonia to go with Jenny to a Asthma – Clinic. This “Lungspecialist” diagnosed of hearing Jenny’s
loud , ratteling, whisteling breathing ‘ clearly heavy asthma’.......
Our pediatrition finally sent us to the University of New Mexico in Albuquerque to take a sweat – test…just to be sure ….
We got an appointment pretty fast. …Simply that was a bad sign….
At that point in time I did not even know what sweat – test meant. The evening before the
appointment I checked in the internet….~~ and I went into shock….when I read for the first time about “Cystic
Fibrosis”.
Oh God…all the symtoms from birth on Jenny had…...Jenny has CF = no doubt.
I was torn up. Everything was revolving around me , I could not calm down. I cried all night.
On September 17th 2002 we drove to Albuquerque ( 4 hrs ) to UNM pulmonology.
Mornings the sweat-test was scheduled and in the afternoon we did meet pulmologist Dr. B.
He looked at Jenny and said: “I t does not look like, that she has CF ..... He told us something about her digestive system, why
she would not eat and asthma, etc .. and the way it looked, it is not CF......
We drove back for 4 hours slightly relieved . Because Jenny did " not have CF" …I could even sleep that night.
The next morning, September
18th 2002 just past 8:00 am the phone rang. My feeling
was = bad news. My husbands face said it all…the ground was shaking …
Dr.B. told my husband that the results of the sweat-test were positive.
JENNY
HAS CYSTIC FIBROSIS with the mutation F508 and 1717-1G.
I cried ~ I screamed, I hoped it was a mistake ~ it couldn't be true.
Dr.B. wanted us to go to ABQ with Jenny right away. She even already had the dangerous Pseudomonas germ which were already damaging her lungs.
Friends came by and packed some things. ~ I was in shock. Paralyzed ….Why Jenny? Why us? I couldn't stop crying anymore. I felt
like the ONLY CF – mother in the world. I was very afraid also that my other two children had CF too….no one could
say for sure at that time.
How
we got to ABQ this afternoon… = … I do not recall. Dr.B. waited for us that evening.
It
felt like torture, when Dr. B. told me face to face that Jenny has CF. Every word hurt even more. I hardly could ask anything,
could not breathe, could not stand and could not even pronounce this disease.
I
asked:” How long will Jenny live?”…Dr.B. just shook his head and stared to the ground not saying a word….
O.K. – = he does not even look me in the eye….The
worst thoughts crossed my mind.
Dr.B. said one single sentence, which was burned into my heart =
~~~~“A life with pain and suffer has begun “ ~~~~
No
one was there, when the Doctor “educated” us about CF. All "those Information" on that terrible day. Where was
an anchor? Where was the shoulder to cry on in this extreme situation? My husband had also almost no strength.
Dr.B.
took us to a room. We followed like puppets. There we sat, silent – left alone- holding Jenny. Desperate, helpless and
my fear was tremendous…We sat on the bed, silent, as if we were waiting for our execution. Why are we here? What will
happen next? Thousands of questions passed through my mind. The following days were hell. Jenny had to suffer a lot.
Jenny got a “pick – line” in her arm. This way the antibiotic – I V worked better. Jenny did
not get at all what was going on. 48 hours after the diagnosis, my mother from Germany arrived.
It felt soooo good to see her.
Jenny
was in pretty bad shape due to the antibiotic – I V. She was very weak, she could hardly cry.
After
a week, we were back home and continued the IV at home. But other problems showed up like infections and high fever…
etc … so we had to go to the E.R. again.
I
was so weak and tiered, that I slept on the hospital floor at the time.
Now I know the meaning: = C Y S T I C F I B R O
S I S
I
know also, that I am not the only CF – mother in the world…
The first weeks with “CF” were totally stress and desperation. All the medications, inhaling, changing the IV, the chest P T etc. I had the feeling, that I will never be able to
make it. I cried a lot.
I was ‘super careful’ with Jenny, everything got disinfected and the first weeks I did not let her go outside
the house because of the fear of infections.
TODAY
~~~ almost three years ‘after the diagnose’. = All is (almost) ‘routine’. CF is part of
our life, like brushing your teeth. We learn living with CF on a daily basis. Jenny and I have good days and bad days. Probably
I have more bad days than Jenny.....
The
therapy to loosen the mucus, she doesn’t always take with a ‘laughing eye’. But she found out by now, that
the inhaling helps and eases her breathing.
We
try to live as ‘normal’ as possible…. = often that is not easy.
The ‘inside’ pain of having a child with a terminal disease is sometimes unbearable. I still cry often.
Since Jenny can talk now, questions are coming up… like:
"Why do I have CF and not Julia and Joey ?" or "Will I be O.K. soon ?"
or "When I'm grown up, then I don't have to go to the hospital anymore ?"
Often it is not easy to find the right answer. But I try to tell Jenny as much as possible about CF.
Meanwhile I had also a lot of great and unforgettable meetings and also very sad CF – friendships.
Jenny is a ‘fighter’ and my goal is to give Jenny a ‘normal’ life with CF until science has
found a cure for this genetic disease.
I
admire “ALL CF-PEOPLE” for their strength, power and endurance and their ‘gift’ to see life still
positive. I admire “ALL CF – PARENTS” about their daily strength to live with CF.
KEEP
ON GOING AND BELIVE IN MIRACLES.
Susanne
- Mom of Jenny (CF)
***Fighting for
a cure - Cystic Fibrosis ***
