Rose’s
story
My
husband Bob and I are foster parents and have been taking care of
medically fragile children for 13 years. We have taken care of many
children through the years and while some have gone back home several of
them have stayed with us. The ones who stay we have adopted. We received
a call about a baby girl in December 1995 who had severe hydrocephalus.
She had been abandoned in the hospital and needed a home. We said we
would come right away and get her. She was beautiful with dark hair and
big brown eyes. She had already had 2 shunt surgeries. The first one had
become infected so they had to replace it. After the doctors put in the
second shunt they said she had hydranencephaly. We had never heard of
this and looked it up. What we found was very depressing and doubly so
when the doctors told us she would live only a few months. We had a
little girl named Jennie who had passed away due to complications, a few
months before getting this little baby.
I did not know if I was up to the challenge of taking another
child who would most likely die soon. The first few months I had my
husband be the first to go into her room in the morning, since I did not
want to be the one to check her to see if she was still breathing.
This is something that I would change if I had it to do over,
since I have to admit that the first minute I laid eyes on Rose I loved
her. After bringing her home I would carry her in a baby sack all day
next to my heart, to give her the security and love she desperately
craved. However I tried to protect myself and not get too emotionally
involved. It is very painful to lose your child and I wanted to protect
my own heart from another loss. As the months went on we realized that
Rose was here for as long as God chose. I had to release some of my
feeling of trying to control her destiny as that is in God’s hands and
he chooses her time as well as ours! I chose to love and care for her
and think of her first, not myself, since she needed her mama. Rose had
crying spells when she was younger and seemed to have pain. When we
realized that she was having many feeding problems (spitting up, gassy
tummy, constipation and weight loss) we asked for a referral from the
pediatrician to see the GI doctor. The pediatrician told us to just feed
her what we could and let her die. This was one of many battles to
protect Rose and give her the quality of life we felt she deserved. We
knew another doctor who agreed to see her and he immediately scheduled
the surgery to put in a G-tube. This not only saved her life, it has
given us a way to feed her and give her medications. She has also never
had problems with dehydration due to us giving her water/pedialyte
whenever it is needed. When we had the G-tube placed it created a shunt
blockage. This was when she was 6 months old. The pressure and pain she
suffered from the blocked shunt was bad. She had so much pressure in her
head due to the fluid buildup and it caused her such awful pain that she
cried and spit up constantly. Rose was able to see and would track us
with her eyes before the shunt problem at 6 months old but after waiting
for almost a month to get it fixed (she had an ear infection so they had
to wait till that cleared up before redoing the shunt) she was totally
blind. We figure that the increased pressure probably caused her
blindness. Her hearing is fine and she will smile and turn towards our
voices. She loves to be held. Rose is up all day either sitting in her
wheelchair, standing in her stander or being held. Rose does have some
head control but cannot walk or talk. When she was born I looked for
information as to what she could do when she got older and as to what we
could look forward to in regards to her health and abilities. What I
found was that each child is very different. As she gets older she has
some problems that other children have such as seizures but we just
approached that when it came. In her case she was 5½ years old before
she had them. She is currently not on medication for them since she has
them very rarely but we have Valium gel for static seizure activity,
which so far she has not had. The doctors have Rose on Reglan and Zantac
for her reflux and Albuterol and Chromolyn for her reactive airway
problems. Currently we give her the breathing medications daily to
prevent any breathing problems. Rose has only been in the hospital once
at 6 months old for her G-tube and shunt surgeries and has not had to be
in the hospital at all since. She is very healthy and happy most of the
time. We think that worrying about what might happen takes away from our
joy in her. A lot of the
time what you worry about never happens! Having Rose as our daughter is
a humbling experience as you are not in charge of her at all you are
just caring for her for whatever time that God allows her here on earth.
She is such a blessing to us. She teaches us to slow down and take life
as it comes, since her wants and needs are very simple. She wants
nothing but our love and attention but is content to wait for us. Taking
in a child as handicapped as Rose means that we quickly became very
aware of her needs, since she cannot tell us what she needs. She is
still like the baby we brought home but is more settled, more alert and
certainly more interactive with coos and smiles. Recently she was
sitting on my lap and she began making noises. I did not look at her and
she began getting louder and louder. Since I was talking with my husband
I juggled her softly and tried to reposition her to quiet her down. She
kept up the noises so I looked down at her and she was smiling ear to
ear. I then realized that she was making noises in response to my voice
and every time I said something she cooed and smiled. I told her how
much I loved her and how much Jesus loved her and she settled into my
arms and kept smiling. At 6 ½ years old she is so forgiving! What a
girl!!!
To see Rose's
story on her family site
 
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