Sunday, August 4, 2013

Grieving the loss of dreams…and finding new ones!!

When my husband and I were pregnant for the second time, we went in for an ultrasound and found out we had lost the baby.  We didn’t have any kids yet, and had already miscarried once before.  I was heartbroken.  I went to my doctor’s office straight from the hospital where the ultrasound was taken and she came in and handed me a flyer advertising a miscarriage support group.  At the time,  I could’ve cared less about the flyer!!  But I took it anyway and put it on my desk when I got home and didn’t think about it for weeks.  After I had miscarried, I eventually found the flyer and started reading it.  It had the Kübler-Ross model of the five stages of grieving on it with examples of feelings for each stage.
Denial—this isn’t really happening.
Anger—why would this happen to me?
Bargaining—I will do anything to make this go away.
Depression—this is terrible, why even try?
Acceptance—it’s going to be okay.
I was surprised when I read these stages how applicable they were to the wide range of emotions I had been feeling during my miscarriage.  It made my grieving process real for me, and gave me hope that maybe what I was feeling was normal and part of a coping process that would truly end up with acceptance and some sort of ability to move on. 
I know not everyone experiences every step of these grieving stages, but as my husband and I have processed the diagnosis of Autism for Justin—we have definitely spent time in each stage.  I have friends who say to me, “Wow, you handle this Autism thing so well!”  And I immediately have a flashback to when Justin was 3 years old and I cried every day and had absolutely no hope for our future.  I was so depressed and really couldn’t see how having a child struggling with Autism could every bring any kind of joy or happiness for him, or our family!  I found myself making mental checklists of all the things I wouldn’t get to see him accomplish if this were as bad as it seemed to be back then.  And I would just sit and cry, and then be angry, and then cry some more.  Was I having an attitude of gratitude at that time??  No, and I felt so guilty about that then…but now when I look back at that time frame, I am so proud that even though I felt no hope, and perhaps no amount of gratitude for the other blessings in my life—I just kept moving forward.
We were living in Germany when I just started to wonder if Justin had Autism.  I had a very sweet friend who had a son Justin’s age and she came over for a playdate one day.  We were talking about our kids and things they were doing and she matter of factly said, “yeah, I think my son might have Autism.”  I just stared at here.  Her beautiful, happy face—and thought, “How can you be okay with this, and you even look happy too!?!”  She left and I couldn’t get her out of my mind all day.  Why couldn’t I accept that Justin may have Autism?  I was just so terrified that our life was falling apart at the seams.  The future seemed so unknown and out of control!  I didn’t understand how she did it—but she was my mentor and I kept her in my mind as a great example—perplexing as it was to me, I kept thinking, “I have to figure out why she can be okay with this, because I want so desperately to be okay with this!”  And as I slowly got more information about Autism, and finally at the age of 4 a diagnosis—as hard as it was that day to hear the doctor say he knew Justin had Autism, I started to feel better about Autism.  And then we found out about ABA, and all of a sudden I got some hope back in my life and started to be proactive and felt like I had control over helping him.  I remember the first time he said, “Buh!” during ABA.  It had taken weeks, but he finally said it after he was asked to repeat that sound.  I finally felt joy again!  And then I pictured my friend from Germany and thought, “Now I get it, I am getting there!!”  Getting through the denial, anger, bargaining, and depression was a rough 2 years for me—but it is so nice to be on the other side of that now and experience all the joys of being proactive!
No matter how different our trials are in this life, we all have dreams that are unfulfilled.  It’s a topic that a lot of people are uncomfortable acknowledging because it carries a tone of ungraciousness to say, “I am so mad because I didn’t get what I wanted!”  I don’t think we need to feel guilty about being sad, or mad.  There will always be opposition in all things and feeling pain helps us appreciate the joy when it comes.  And moving on from that angry stage though can bring about the greatest joy and acceptance of all the other blessings we have in our lives.
One of my favorite quotes that inspires me when times get tough is from Elder Jeffrey R. Holland.  He tells a story of how years earlier, he was driving his young family to move across the country and his car broke down twice, in the same spot!! (Here is a link to the video of this story)  He drove by that same spot in his older age and said he could almost see that same scene in his mind of a young, worried father walking to a nearby town to get help and leaving his wife and two kids in the car. He says:
In that imaginary instant, I couldn’t help calling out to him: “Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead.” Some blessings come soon, some come late, and some don’t come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be all right in the end. Trust God and believe in good things to come.
My husband, and my friend who was also my mentor, and several others were that encouraging voice to me back in that dark time frame while living in Germany.  I didn’t feel anything, I was so numb and sad—but I knew I could trust them and we have had so much joy since those dark days!!  And yes, there are bad days that still come up—this year we’ve had a truckload of them!!  But somehow it really does all work out!!
I love Justin so much.  My husband and I were talking about how having a child with Autism is sometimes like having a child permanently in the toddler stage—there is a lot of mischievousness that goes on with Justin!!  But that toddler stage is also so rewarding when you acknowledge every little bit of progress as a victory!! And Justin is always learning new things one step at a time!! I love watching Justin’s spirit of determination to express what he wants—it is one of his strengths.  So is his charming smile, which he uses often to get out of trouble for doing things like this…

Look at that smile!!  We have started to do some projects around the house and had black paint for the doors and white paint for the trim…and Justin decided to “help out!”  HA!! It all got fixed and we couldn’t stop laughing about it:) I love you, my sweet, charming boy!!
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  1. I love that talk from Elder Holland. Still one of my favorites. Thanks for sharing.

  2. Steve told me he read this post and told me to read it, and through tears I send love to your family! Even though our paths are not the exact same, there are SOME similarities! I read what Steve just wrote to you two, and just wanted to add a few things. With a miscarriage, with a death, with anything in life that is difficult and hard, there are dreams lost, and you do have to mourn those dreams that are lost. Having a child with special needs is a hard gulp to swallow. Some how we never forget the day the doctor shares that news. Because you have to begin your new dreams. With a view from losing a child and wanting so bad to see, hold and be with him, I would be more grateful for the small victories like you mentioned. With Nathan it always took months and months of therapy, training, repetition for him to grasp one small thing that typically comes so easy for other children. But, man, the joy that comes from him learning something new was, just like you said, indescribable. His smile lit up my world, and I knew he was a blessing, but with every thing in life there are pros and cons! I know God knew this is what was best for our family, to only have Nathan in our home for 10 short years. But they were wonderful, and being blessed to have adopted a sweet little girl, it has brought joy in to our home, that I never knew we could have again. It has been a blessing to watch her learn and grow with ease, and have no major surgeries etc. These bodies really are miracles of how they grow and progress. And God has so perfectly placed these children with special needs where they can effect so many, mostly for the better. You are amazing. Your time, energy and love that you shower over Justin! Perhaps you may not feel amazing, just ordinary, but you inspire me, because you don't give up, you keep moving forward wether you are having a good day or not. You're doing exactly what God expects. Justin sure is handsome! You are a faithful servant, Way to go! I'll be your biggest cheer leader! You, are doing hard things, maybe not because you want to, but because God wants you to, because he knows the end result will be beyond beautiful! And you trust that!

  3. You are so inspiring to me. Thank you for sharing.

  4. Sweet friend of mine:
    You truly have the gift of takes a lot to just raise kids, then to have special needs too. I still realize I go through the grief cycle at times.


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