It is hard to believe my sweet girl will be 16 years-old
Sunday. I have been thinking about how our hopes and dreams for her have
changed over the years. 16 years ago, she was a typical baby and we were
typical parents enjoying our first baby. We had no idea the curve ball life was
going to throw us. 14 years ago, almost to the day, Ashley regressed into
autism and lost almost all her skills. She lost almost all speech, wouldn’t
look at us, wouldn’t play with Hailey, and started biting herself. We just wanted
our little girl to come back to us. 10 years ago, we desperately wanted her to
talk, sleep, be potty trained, and stop self-injuring. 7 years ago, we were so
excited that she was finally potty trained and she had the talker (not her own
voice, but a huge impact on her life and thus ours). But we were very aware
that she was living in chronic pain and had been most of her life, and what we
wanted most was for her pain to stop. 6 years ago, we started getting the
infections under control and were making headway on the bladder problems. Just
this year, we have got the bladder issues almost completely under control. Just this past couple weeks, we have made
huge gains on discovering a source and treatment for her pain.
One of her doctors recommended a medication used to treat
nerve pain as something that might calm her down and help her sleep. When I
began researching it, I realized Ashley displays many of the symptoms related
to nerve pain and thought it was worth a try. The first day she started it, she
had no self-injury for the first time in 13 years. We are still in the early
stages and deciding on dosage, but we are very hopeful that we are on the right
track. This is something we have been praying about and working on for more
than a decade, proof to never stop hoping.
Ashley has had an
eventful and successful year. She has made so many gains and we have worked out
so many medical issues. Also, she is using an IPAD as her talker instead of the
separate bulky device. She had a change in caregivers. Our new caregiver,
Brenda, is great with her. And Jasmine, who moved away, comes back once or
twice a month to work with her as our back-up caregiver. She still loves
Christmas music and swimming. We wake up to Jingle Bells or Frosty the Snowman
every day. On a related note, the rest of the household hates Christmas music!
This birthday is bittersweet because it is such a milestone
for most children. In a different world, Ashley should be dating, getting her
driver’s license, and thinking about college. None of those things are part of
her life. We mourn those loses. But she is still becoming a woman, whatever
that comes to mean for her in the next few years. Time will tell what the
future holds for our girl.
I had a lady at the pharmacy the other day watch Ashley, and
comment, that she was sorry and our life must be so hard. I told her the truth,
our hopes and dreams for her have dramatically changed over the years, and
there are challenges in our day to day life, but raising Ashley has been and
continues to be such a blessing. She has taught us so much about love and life.
We have a greater understanding of what is truly important. She has led me to a
career that I love. She has had such an amazing impact on the people around
her, especially Hailey and Josh. Obviously, I would take away her suffering, if
I could, but since I can’t, I choose to look at the positive impact. She has always been and remains the heart of
our family, which is so fitting for my little Valentine baby.
