Jude is still having a hard time with his tone and spastic muscles. However the good thing is that we are getting a few smiles out of him. We are still walking the same path with his oxygen, his medication, and hoping for a night RN. We still have to suction his thick secretions about 30-50 times a day. So no new big changes but at least we get some sweet smiles.
Today I was scanning through some other blogs of moms with special needs. I laughed at some of the situations I could relate to like actually taking the time to brush my own hair. We get so caught up in being such care givers that we fail to take care of ourselves. So it's a huge feat to actually use a straightening iron and make the effort to look pretty. I smiled at another blog from a mother that stated her therapist told her taking care of her autistic child was like having 10 normal children to care for. I wondered in the back of my mind how many Jude would equate to. Then as I continued to scan I began to notice for the first time that there are not many blogs I follow with children as critical as Jude. There are a few with one in particular of a mother I talk to pretty frequently and I completely appreciate her advice and Internet friendship. I am sure there are lots of blogs out there I haven't found but for a split second I felt a little alone. Jude won't go back to school on hospice so there are no ARD meetings or goals we have set regarding education or progressive therapy. There really is no debate for us on vaccinations because of the severity of Jude's condition. There is no debate on what type of communication device to get him or adaptive equipment to help get him to walk. I realized we truly are just keeping Jude comfortable. Then I wondered how much of all these efforts are for us and not for Jude. Do we as parents love our children's company so much that we push them to extreme lengths to keep them just healthy enough to stay with us?
I don't really remember the sound of my house anymore without the steady rise and fall pumping of the oxygen machine. Jude's bed has become one of my living room fixtures. Sometimes while sitting on the couch watching TV I will see Jude's little arm raise up from his bed so I will say "arms up Jude.... arms up". I used to say this to him prior to his surgery and he would give me a huge grin. Sometimes he would raise his arm, but most of the time he just smiled. Jude's life has changed so much since the surgery in July. A surgery we did because we made a decision to try to make him.......healthier and to live a more pain free life. So again I wondered how much we push for normalcy when maybe we should just accept life the way it is. Jude's had a hard time this week, but again he is happy when he wakes up. I still snuggle up to Jude and bury my nose into his hair and smell his sweet smell. I kiss him on his cheeks and forehead LOTS. He loves being kissed and hugged on. Mike thinks Jude's illness is temporary and that Jude will only continue to get better. I generally just smile when Mike says this because my mommy instinct tells me that the last battle Jude had was a really hard one and it caused a lot of damage. If Jude improves and gets back to the little boy we had before then that's awesome but if not I accept what life has given and will take it a day at a time. That rather than push for normalcy I will make the best decisions possible for my child based on the situation at hand that particular day. I guess that's really all we can do as parents.