Sunday, January 24, 2010

The Quest for 2010: Acceptance

I pondered this post for a long time before sharing it with you, my readers. Last year, I shared a quest for Connectivity through which I gained such insight that it literally changed my outlook on life. By opening up my own quest for general discussion with family, friends, and anonymous readers, I learned so much more than I would have ever learned on my own. Pursuing a quest on one's own is never as successful as it is when in the company of comrades.

My new quest is for acceptance. No, I am not talking about acceptance to a club or clique, but the last step in the five stages of grief: Denial, Anger, Bargaining, Depression, Acceptance.

It was through the counsel of a person who has walked in my shoes and who shared with me some profound wisdom, that I realized that I was grieving the loss of motherhood or more specifically what I dreamed of as motherhood.

As a mom of a special needs child, she shared with me her walk through the five stages of grief after the birth of her son. Like my son, when you look at her son, he looks perfectly fine, but lurking beneath the surface is a horrible medical problem that would profoundly change her life, her husband's life, and the life of their eldest son. She shared that you have to grieve for the loss of the dream and perception of normalcy. She shared how she had traveled through the stages finally ending up at acceptance. She finally accepted that her son had medical problems, but that it was okay, and that she would be spending a great deal of time in doctor's offices and surgery waiting rooms.

"You have to work through the same five stages of grief till you can accept that your life is not normal." I was in tears as she explained all this and for the very first time put words to what I was feeling and unable to put words to.

You see while my son looks normal no one realizes the anguish that I feel because he is not 100% healthy. I am reminded daily of that as I wait for a dirty diaper or clean up spit-up from yet another acid reflux bout, or as I sit in the second or third doctor's appointment for the month with yet another specialist.

My son's diagnosis with 7q11.23 duplication is only a title to sum it all up: constipation, acid reflux, hypotonia (low muscle tone), speech delay, an undiagnosed sleep disorder, and various eye sight issues which require glasses and patching for two hours at a time. We see six specialists and our pediatrician twice as often as the average child for weight and growth checks. Twice he has been in the failure to thrive category. His speech has not progressed since he was eight months old. In order to achieve even the most normal milestone, it takes great effort on not only his part, but mine, and his occupational therapist. Every milestone accomplished is because he was taught by me or his therapist.

So I grieve and I pray.


Phil said...

Cynda, so well written and truly a great post that helps us all understand this difficult process. I learned new things from you in this post and am thankful for your transparency. You are always on our minds, and in our prayers. Appreciate your is a challenge to me personally.

Laura said...

I agree with what Phil wrote, Cynda. While I've always admired your perseverance and happy outlook on the diagnosis, I should have looked deeper to see what is obvious after reading your words.

As your friend, I celebrate your hard work and love for Snugglebug. It is obvious that God put the 3 of you together for this very special purpose of bringing Him glory through these challenges. I don't say that lightly, though, and believe that all should be sunny and smiley.

My prayer is that this season of grief will not be in vain. I pray that you will be able to take the HUGE work God is doing in you and then be what the mom you mentioned in your post is... a light for other mommies of special needs children.

You are a light for me in this area. May I be more sensitive to your needs.

Love you,

Araratacres said...

Cynda, Good morning dear friend. What is normal anyway? The perception that we must all be alike? Your little guy is (and is going to in the future) thrive in his own way. I just know it. He has fully supportive parents and fully supportive friends as well. If you look at the "real" normal in society, you will see kids who don't have parents who are strongly active in their lives....and then they frequently grow up to be teenagers who are normal... in that life is "all about them" and they are frequently the ones your lovable policeman husband ends up chasing and/or reprimanding. God doesn't give us any more than we can handle (Boy, I've learned THAT myself this year). He knew you were a special mom with special talents to raise, nurture, and teach a very special little boy who, although doesn't fit society's mold, is normal in his own little way. After all, normal is relative, isn't it?

The Pratt Family said...

Cynda, thank you so much for laying yourself out there with such transparency. It is a difficult process, and I had never thought about the "grieving" process like that before. Outside of the "normal" grieving situations.

Gabriel is such a beautiful little boy and I agree with the other comments in that God chose you to be his mommy because YOU are and have an unique and wonderful soul. I would love to talk to you more about this!

Cynda Western Felini said...

Phil, it is so encouraging seeing my pastor read my blog. Thanks for the comments and the great conversation on this topic.

Laura, you have encouraged more than you realize. You have said things that have helped me along the way. God has used you in so many ways to encourage me that neither of us will ever truly understand. You are a wonderful friend to have.

Liz, what is normal? That is a good question and one worth a great deal of thought. Perhaps the real question is why do we have the standard of normal? Why do we have to measure up to someone else's standard. Much thought and perhaps a blog post completely on that subject down the road.

Thank you all for your comments. Please send me your thoughts, comments, or bits of wisdom. That is what a quest is all about: Gaining wisdom, understanding, and clarity from open conversation.

Cynda Western Felini said...

Amy, I count it a blessing to have you in our church and as a friend! Thanks for you thoughts. I can't wait to visit more and learn more about your experiences with Mason.

Linda said...

Sorry--I'm leaving comments all over the place! That's what I get for not reading for awhile.

I do have to say in addition to the rest--being able to celebrate the smallest accomplishments is a real gift, though it may not feel like it. I would not appreciate the TRUE miracle of birth if I had not experienced the losses of miscarriage. I appreciate the miracle of first steps, first words, etc. because I have seen the work involved in teaching some children how to do this. I appreciate the importance of early nurturing when I watch my older adopted children struggle with feelings of security and feeling loved. I would not have realized these are true miracles if I had not seen the opposite. I will NEVER take these things for granted. I will marvel at them and praise God.

I remember several Thanksgiving gatherings at church where people would stand up to say what they were thankful for. You'd always hear several people saying they were thankful for family--it was almost trite. But when my 11 year old son (who'd only been adopted 2 years before) stood up and said it--I wanted to shout to the whole congregation "This is NOT the same! This is not trite! He is TRULY thankful because he knows what it means to not have it!"

Sorry I'm so wordy tonight. I guess I'm just trying to say that I am truly amazed at the intricacies of how God works in the world. Though I have HATED all the pain I've experienced and witnessed, I do not think I would have the same awe of God that I do without these experiences. I know you rejoice in all of Gabriel's accomplishments, and you will NEVER take them for granted. In this you are closer to the power of God than most people will ever experience. Wow! Give my cute little nephew a BIG hug & kiss!

Linda said...

OK--just one more thing! (Sorry)

Yes, you and the therapists taught him the milestones. B-u-t-----he is a smart boy who was able to LEARN from what you taught him. I can't begin to tell you how exciting that is to see. I have seen MANY children whose parents spent more than 40 hours a week in therapy for years (and tens of thousands of dollars) whose children still did not learn those things. Gabriel's cognitive abilities certainly appear to be intact, & I am so-o-o grateful for that (as I know you are too).

Ok--I'll shut up now. You probably won't hear from me for months now. ha ha