As parents to a child with a
rare disease, it is the hardest thing to continually see Talan with so much
pain. In return, there is a lot of worry, stress, strain and 24/7 care given to
Talan from us parents. Through various events of doctors not wanting to see
Talan anymore because of his rare disease, the only option that we as parents
could do for Talan at this time is to have hospice come into our home. We know
some people have already heard of this happening for Talan, but we just wanted
to clear some things up. This decision has by far been the hardest choice to
emotionally realize that Talan needed this type of help. No one ever thinks of
putting their 25 year old son on hospice at such a young age.
Love that SMILE of his!
Talan
is at a point that the pain is so excruciating that he is awake for about 2
hours out of the day. When he is sleeping he is still is
so much pain that he is uncomfortable. He is at 3 liters of oxygen almost all
of the time. The disease is starting to take over and harden his lungs and is
throughout his digestive track. IGg4 Systemic Sclerosing Disease is ugly and
mean. Doctors told us that it was time for him to go on hospice. With the help
of hospice, we are able to keep Talan home while trying to keep him comfortable
where the doctors can’t help.
We know and feel that this is the best option for him right
now in his life. Once again, it was the hardest realization that he needed this
type of care. Talan has had hospice service for about a week now and it has
been so nice to be able to have some additional help and care for him. We have an
awesome nurse (Lori) who is very kind, loving and understanding and will do
anything for him to help him. We have also had an awesome Social Worker and a Chaplin
come and talk to Talan. The Chaplin has been an LDS Bishop and Seminary Teacher
and was able to help with a lot of Talan’s “why me” questions and replace them
with “what” questions. What am I supposed to learn from this? What are others
supposed to learn? We truly cherish our time we have with Talan and pray for
many years to come to make memories with him!
There is never any
time frame with this disease and as to how long we will need hospice in our
home. I have put together some bracelets, lanyards and dog tags for Talan to
show support and help for him.
Times are still hard and Talan still needs your love and prayers. Talan’s moto is to NEVER GIVE UP and we will continue to fight to the finish! Talan Summers, you are our hero and we will all continue to fight this battle with you!
