Therapy---For Me

Jayson has an average of about 10-13 therapy appointments a month working on Occupational, Physical, Vision, Development, Horse and Feeding therapies.  After two full years of living in survival mode, dealing with depression and anxiety, and trying to deal with things on my own, I decided it was time for ME to get some therapy.  Our school district's Early Intervention program also provides therapy {in-home} to parents.  There is quite the wait list, and I've been on it for months.  I just started seeing a therapist two weeks ago, and I think it is going to help to vocalize the bazillions of crazy thoughts in my head and emotions in my heart.

After an assessment, she asked me what I really wanted to focus on in therapy.  My answer was simply-- I just want to be happy most of the time.  Sure, I have moments of pure bliss every day watching my son do amazing things, but they are quickly taken over by feelings of doubt, fear and frustration.  I isolated two things I really wanted to work on to help make me happier:

1. Coping and Dealing with Hurtful Comments 

from Family and Friends

2. My Self Esteem

You would think that after two years of having a child with disabilities that I would have grown a thick skin.  In many ways I have.  But I still manage to let comments from family and close friends into my heart and head and eat away my happiness.  I know my family and friends love me, Mike and Jayson, and it is easy for me to say that their comments come out of ignorance and not understanding, but that in itself hurts... a lot.  I spend a lot of time on the phone talking with family and friends so they can understand a little about what I deal with on a daily basis.  I post a lot on Facebook so family and friends can gain an understanding about our lives.  I blog regularly so I can explain in even more detail about this crazy life we live.  In my mind, that should save me from the ignorant and hurtful comments.  But it doesn't.  I take them personally and I let them kill my happiness.  Here are just some of the comments that I have heard or hear on a regular basis, and unfortunately I let them replay in my mind often:

• It would have been easier on everybody if Jayson would have just died.
• Jayson is not much harder than a typical child.
• Jayse would eat and get rid of his tube if you would just feed him.
• J could get rid of his tube if you would just feed him the right foods.
• I cannot let myself get close to Jayson because I think he is going to die.
• Jayson would not have all of these problems had he seen a cranial sacral therapist early on in his life.
• Jayson would be eating and walking if you would just take him to a cranial sacral therapist.
• Have you tried ___________ (oils, natural herbs, acupuncture, natural medicine)? Clearly what you're doing is not working/helping.
• Jayson is not talking because you don't work with him.
• If you wouldn't do everything for him, Jayson would be talking by now.
• Actually, Jayson is easier than most typical kids.
• Is he going to outgrow his issues?   (SN:-- cuz most kids outgrow genetic syndromes, right?)
• Jayson doesn't look as different as he used to. You can't hardly tell he has a syndrome.
• When will he be able to ___________?
• When will YOU be able to ___________?
• Why does he still have a binky/pacifier? Sleep in your room? Suck on his fingers? Have you feed him?
• He doesn't look that sick.
• Why do you keep him so isolated?
• Why do you take him (here) but not (there)?
• Germs and illness are good for him.  They would build his immune system. 
• (From a doctor in the family, downplaying Jayson's situation BEFORE chiari surgery when life was really rough) Oh, I have some patients on oxygen like Jayson, but they are kids with genetic syndromes who have respiratory issues, feeding tubes, and many health complications.  They spend a lot of time in my office and in the hospital.  Jayson doesn't look that sick. (Really??? Clearly this family member knows nothing about our situation)

It is surprising how much I let these things bother me.  So far in therapy, we have not discussed strategies to help me let these comments roll off my back.  But, I think by working on my second goal of self esteem that I can easier deal with these hurtful things.

We did make some progress on my self esteem last Friday.  I have not always had self esteem issues.  I have always been pretty confident and comfortable with who I am.  However, my identity and who I am was always defined by what I did and my successes.  It was how I was raised.  People knew me and recognized me for my 4.0 GPA, my near perfect grades in college, my many scholarships and recognitions, my success in my career, my church callings, my leadership positions, etc.  Those things got me praise, and those things defined me.  I felt good about myself because of my successes.

Well, let's be honest, I have not been very "successful" by my definition over the past two years.  I have all but lost my job.  I was intending on getting my Ph.D and now that indefinitely put on hold.  I cannot hold a church calling.   I have resigned from all of my leadership positions.  I am no longer dependable.  I am not able to help or serve anybody.  I am a nobody.  After all of my hard work and accomplishments, I am a nobody.  And it is surprising how quickly people forget who you were and your successes.  It's like many colleagues do not even remember the old me.  They just know Tristin, the flake.

I know I am not alone in these feelings.  A lot of mothers go through these same feelings and emotions when they leave their careers to be full-time mothers.  However, it is different.  The therapist recognized that I like to feel validated.  She asked what makes me feel validated at home?  Hmmm....  Most mothers get smiles when they smile and their kids.  Validation.  Most mothers get hugs and kisses from their kids.  Validation.  Most mothers get to hear the precious words, "I love you." or even just "mommy".  Most mothers get welcomed home by their toddler running to the door to be picked up.  Most mothers teach their children skills and get immediate validation.  These things don't happen for me.  My son does not often make eye contact or smile when I do.  My son does not easily or frequently give hugs and kisses.  My son cannot use words to tell me he loves me or to call me by name.  My son cannot run to me, but even more difficult, he often does not respond or react when I return home after a long day at work.  My son has difficult learning skills, and when he learns them he often is unable to retain them.  I do not receive validation the way most moms do in the home.  It helped me to say that out loud.  It validated me to say I do not often feel validated.

Please, don't misunderstand.  It is very rewarding to watch my son achieve each and every little tiny milestone.  We celebrate literally everything.  But there is a caveat.  In the back of my brain with every celebration is the knowledge that he might do these things now, but it could change tomorrow.  He struggles to retain his skills and milestones.  Unfortunately, that puts a damper on the the validation of these milestones.

The therapist asked me, "Do you give yourself credit and validation for these skills that your son does learn?"  This question hit me like a ton of bricks.  No, no I don't.  Not even a little bit.  My son works hard for each and every little milestone he accomplishes.  He practices and works, works and practices every single day.  He overcomes seizures, pain, neurological impairment, hypotonia, vision problems, hearing problems, and lack of coordination with every little thing he accomplishes.  I do not take that lightly.  That is him, all him.  He has an incredible amount of determination and persistence.  Those are things I would never dare to take away from him.  Those are HIS accomplishments, not mine.  So although I am helping him, coaching him, teaching him and standing by his side as he overcomes all of these obstacles, I do not give myself ANY credit.  The therapist did not tell me whether this was right or wrong, healthy or unhealthy.  But she did encourage me to find ways to validate myself each and every day, including through my work with Jayson.

So as you can see, I am a work in progress.  I am working through a lot of messy issues.  I want to feel good about myself and I don't know how when I am unable to be successful in my career and leadership responsibilities at this time.  I am working hard to try and validate myself for the work I am doing at home, but it will not come easy.  I want so desperately to love who I am.  I want to feel good about who Tristin is as a person.  I want to feel happy being me.  While Jayson is on his journey to overcome many obstacles, so am I.  I am eternally grateful for my special boy who has shaken my world and taught me what is really important.  It is part of his journey to teach me more than I will ever teach him, and the life lessons I am learning will not only help me in this life, but in the life to come. 

Thanks Little J for being my teacher and saving me from myself.  You were sent to me to help me be better.  And with you as my teacher and inspiration, I know I will go far.  We will go far.