Sunday, November 27, 2011

Raising Daniel

Yesterday I wrote about my experience growing up with a disabled older brother. My mom read that post and sent me the following, re: raising a disabled child. Keep in mind that she did all this almost entirely without the support network that the internet can give these days. It must have been very lonely at times.

No parent can be prepared for the bombshell of learning their child is severely disabled.   You can only accept and move forward by learning all you can, finding all the helps you can, and depending upon our loving Heavenly Father for guidance.  Normalizing the experience is beneficial to the child and to the family.  I've seen in a few families where perhaps out of guilt or unrealistic expectations, a parent throws every possible family resource toward the one child, leaving the others on the fringe.  Of course we should do our best for the disabled child, but neglecting the others is a mistake.

A parent's perspective changes when a disabled child joins the family.  It was difficult for me to tolerate other parents worrying that their child wasn't walking at a year or  complaining that they weren't out of diapers yet at age 3.  Or mentioning how tiny my baby was, and that their child was "bigger than that when he was born."    I know I was over-sensitive because we did not have a diagnosis for Daniel until he was 5 1/2 years old.   Since his birth I had been blamed by doctors for his non-development, and being only 23 at the time, it was a hard pill to swallow.  There were times when I lay in bed at night going over every single day of the pregnancy, trying to figure out what I ate or touched or breathed that would have caused his condition.  One doc all but accused me of lying when I said I had never taken alcohol during the pregnancy (this in response to his direct question).   It was years before I realized he suspected FAS.  And this sounds crazy, but for a short period I was envious of a friend whose child was born Down Syndrome.  It's an easily recognized syndrome, there is a definitive genetic test for it, and there are plenty of programs to help these children.  I had to fight and beg for services for Daniel.

The summer he turned 5 I was given a strong impression to seek a second opinion.  I mean, we had spent a huge amount of time in medical facilities trying to figure things out, yet it was time to pursue another course.   Within a short time of taking action, we were given a diagnosis by Dr. Opitz from Shodair Children's Hospital in Helena Montana, a world-renown expert on rare syndromes.  I was walking on air.  All the guilt and blame went out the window and we suddenly knew what we were working with.  We were able to connect with the CdLS Foundation for help and understanding.

All through the years I have been amazed at how Daniel being Daniel has blessed our lives and others.   There have been extremely difficult times and those may come again.   But he brings out the best in many people.   Time after time people have looked after him in times of crisis.  They have called me when they've seen him struggling in public, or brought him home when he has been confused or had a seizure.  He has a group of men at church to talk sports with.  Recently we attended another ward's sacrament meeting and afterwards I noticed a sister pushing her way towards us through the crowd.  She went straight to Daniel to ask him how he was doing!--I had never seen her before but he knew her from some activities he's involved in.   There are angels in our midst.

When our Bishop asked Daniel to serve a local mission for 6 months, we were given the choice of where he could serve.  Even though it was 1 hour 40 minutes away by bus/train, I felt the Bishop's Storehouse was the place he should be.   But no way could he manage that commute and how vulnerable he would be if he had a seizure during that time.  We exercised faith and asked Heavenly Father to look out for him.  He had a fabulous 6 months and never once had a seizure at the Storehouse or on his commute.  This kind of experience is commonplace in Daniel's life.  Heavenly Father's hand is manifest through him.

As for [Bridget's] relationship with Daniel, [she] got the brunt of his animosity because [she was] the next youngest child.  [She] grew and matured and passed him up in activities and opportunities.  I am positive that's why he acted the way he did.  Even when [she was] tiny he was after [her].  He cut off [her] hair one time, and another time scraped [her] face with his fork.  And so on.  And [her] lotion/shampoo/conditioner smells didn't help . . .

Too many times other women have said to me, "I could never do what you do" or "I'm glad it's you and not me."   In some ways I feel a bit sorry for them, because they don't know what I know, and they miss out on marvelous and sweet experiences.  But I know if the same challenge was presented to them by Heavenly Father, they would take it and run with it.  That is the choice.

Life is beautiful!

11 comments:

Anonymous said...

Thank you Suzanne. You helped me understand more. Jeremy

Craig said...

Beautiful post. My wife is a keeper.

Miriam looks a bit apprehensive in the photo.

Kitty Crazy! said...

You are truly an amazing woman, Suzanne, not just for the way you raised Daniel, but the rest of your family, as well. You deserve accolades for your great attitude.--Janice

Crys said...

Beautiful Post Suzanne. One I really needed to hear today. I was having a particularly bitter moment over a woman complaining to me over the one day her son had to spend in NICU. I think I can let it go now. Thanks for your words of wisdom and perspective.

Liz Johnson said...

This is a really beautiful post. I love it.

I especially love the end - "'Too many times other women have said to me, 'I could never do what you do" or 'I'm glad it's you and not me.' In some ways I feel a bit sorry for them, because they don't know what I know, and they miss out on marvelous and sweet experiences. But I know if the same challenge was presented to them by Heavenly Father, they would take it and run with it. That is the choice."

True words!

Susanne said...

Wow...I adore your mom's attitude. This was incredibly touching. Thanks for the great reminder that all people can be used by God to bless others. He doesn't make mistakes.

Nancy said...

No way! My friend JUST (as in THIS week) got a diagnosis for her 5.5 yr old from Dr. Opitz! Her sweet boy has FG syndrome—I'm going to share this with her if you don't mind. :) And I'm sure you don't because Bridget just posted it on her blog... :)

Jill said...

Thanks for posting that

Alli E. said...

Beautiful!

Jennifer said...

I shared this with my mom and we both agreed that you're an amazing person, Suzanne. I can't imagine how hard those first few years without a diagnosis could have been. You articulated so beautifully the good and the blessings that come from having a disabled family member.

Allan said...

Suzanne wow, that really struck and chord with me, and honestly, I'm so blown away and humbled to hear your story, trying to meet your son's needs without support or knowledge. My little 2 year old (we THINK) has CdLS, and although it's been plenty difficult, we've at least had so many people ready and waiting to help and support. And I know exactly what you mean about people not understanding what a joy and blessing special need's can be, we're only two years in, but she is my absolute sunshine.
Thank you for your thoughts and insights!
Miriam
madmim.com

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