We're at crossroads...???

The last couple days we have been talking with Paul's work, yes they have called him back and have even offered him a position higher than when he was laid off. I guess the company is in quite a pickle and need more engineer's to return to work. You would think that we would be over the moon with excitement,thrilled to have our financial stability back into play, planning our next trip, finishing our home alot quicker, and even looking at new furniture. WOW, sounds so wonderful and relieving doesn't it?
Unfortunately, for us...NO! It is not all that intriguing. We have found ourselves living a more relaxed, suitable, calmer, better functioning lifestyle. As a couple we are achieving, accomplishing and operating this life in a much better fashion. We are managing to give Braden more opportunities, better therapy, more time and attention for homework, taking time for appointments and following through with the exceptions placed on us by the many professionals that are involved with our lives. Absolutely you could argue, does it really take 2 parents to do all of this? My answer is going to be naturally YES! If you want to do this job effectively and provide him with the best quality of life, then yes, it takes two. When he was little it was easier, but as he gets older it is harder for myself to transfer him onto tables in doctor offices, dentist chairs, therapy tables, treadmill training equipment..etc, etc..is it fair to expect an employer to allow Paul to leave his job at least 3 days a week to meet me so that he can help transfer or lift Braden out of his wheelchair? Not only is there those transfer's but many more in a day. Let's just take a clear look at the life we lead raising a young man with a C2 spinal cord injury..

Self-care skills: including activities of daily living (ADLs) Feeding, grooming, bathing, dressing, toileting

Physical care: Support of heart and lung function, nutritional needs, and skin care

Mobility skills: Walking, transfers, and self-propelling a wheelchair

Respiratory care: Ventilator care, if needed; breathing treatments and exercises to promote lung function, which he is to do 2x daily

Communication skills: Speech, writing, and alternative methods of communication

Socialization skills: Interacting with others at home and within the community

Vocational training: Work-related skills, obviously school and co-op programs

Pain and muscle spasticity: (increased muscle tone) management Medications and alternative methods of managing pain and spasticity including his botox injections starting this spring to relive spasticity and encourage more function in his legs.

Psychological counseling: Identifying problems and solutions for thinking, behavioral, and emotional issues

Family support: Assistance with adapting to lifestyle changes, financial concerns

Education: Patient and family education and training about SCI, home care needs, and adaptive techniques

Ok, so if you think that this is a far stretch from the truth, then you are obviously living a sheltered life. It does not come easy taking care, and providing a life of great quality for a person who deserves it just as much as you do. I guess, living this life we were given without choice has tired us. We have managed to successfully and happily fulfill all of those needs these past 15 years with passion, hope and fierce determination. However, today...we are tired. We are not giving up and will always be strong enough, determined enough, and proud enough to push through and continue to provide Braden with all the wonderful things this life can offer him. Our decisions are based on our limits, and as we get older and Braden mature's, priorities change. We feel stretched thin with all these things in our lives, and another concern is what we can offer to Kailey. She to deserves to have her life validated and we have the responsibility to provide her with our time, encouragement and support. She will not fall to the way side due to her parents being too busy, over-scheduled and over tired.
As Braden grows the demands are changing, they are not lessening...just changing! The therapy is becoming more important, he is no longer a toddler doing play therapy..he has focus and desires for his future and those things come with hard work. Listed below is a list of most of the professionals that he see's on a regular basis, please keep in mind that the professionals that help us order,choose and maintain his equipment is not a part of the list, on top of all these people we still have others that help with daily living..
The spinal cord injury rehabilitation team:
The spinal cord injury rehabilitation team revolves around the patient and family and helps set short-and long-term treatment goals for recovery. Many skilled professionals are part of the spinal cord injury rehabilitation team, including any/all of the following:
neurologist/neurosurgeon
•orthopaedist/orthopaedic surgeon
•physiatrist
•internists
•rehabilitation nurse
•social worker
•physical therapist
•occupational therapist
•speech/language pathologist
•psychologist/psychiatrist
•recreation therapist
•dietitian
•vocational counselor
•orthotist
•case manager
•respiratory therapist
Oh and let us not forget the numerous neurosurgeon's and orthopedic surgeon's we see, also the clinical nurse specialist and the community respiratory therapist.
I am sure that there are many more that I am missing, but that might give a hint to what our life consists of. I am sure most of you would wonder about the speech therapist, well lets keep in mind the computer programs that Braden uses at school and the voice activated software he needs as well..i guess that is the speech therapists job..he does have a condition which hinders his ability to use long sentences during conversations.
Paul and I are very aware that we have the option to bring in others to our home that can help out and allow Paul to return to work. It sounds like a great idea, except do these people look at Braden's health and welfare the same way we do? It is there job, and the experience that we have had over the years is that they do not provide the BEST care for him. Most of them have been wonderful and kind, and very giving, but are they capable of providing the best care he needs. My answer is going to be no they are not capable by my standards. He is my son and he does deserve his comfort needs to be meet above and beyond the capabilities of a personal support worker or even an RPN, besides..if we let go of one area in our life we find that things become overlooked, forgotten and mistaken.
Hopefully there will come a day when Braden will not need us full-time, it would be great to say that might be a definite outcome, but realistically we won't know until the time comes. Knowing Braden's independent personality he will do is best to have a successful career which hopefully he will provide for his own family someday..the thing is though he needs to get there somehow and that is our responsibility.
So, we are at crossroads..what do we do? I don't want to make any significant mistakes that will alter our happiness for the future. In time we both hope to work part time and manage daily living successfully. These next few years are going to be busy getting Braden through highschool, setting him up in college..he will need our support..it going to be trail and error for a bit. We will learn as we go..but for now we will do what we feel is best, in our heart and mind. So as it stands Paul will remain here at home, until they can provide him with a part time position. If that never happens...then look out The Home Depot..hear comes Paul!!
For those of you reading my blog who are not familiar with me and my family, please know that if Paul does not return to his full time postition then financially we will still be fine, just challenged differently.