And it Rears its Ugly Head…

15 Apr

…Chronic grief, that is.

Tonight I found myself weeping as I contemplated Jake’s future.

Those who know me best would not necessarily say that I am a “glass-half-full” type of person.  I can be cynical, I can be jaded, and I can be guarded.  Despite all that, however, I typically have a rose-colored lens type of viewpoint regarding Jake and his interactions with the people around him.  I tend to write and reflect a lot on the fact that we really have only had positive experiences so far.  I feel blessed, I feel encouraged, I feel supported.

For some reason though, it all fell apart for a few minutes tonight.  What started as an innocent comment about someone else’s child bored its way into my soul and set up camp there, nailing the tent pegs in one by one – worry, fear, suspicion, and overwhelming sadness.  And there the tent stood ~ whipped around by the winds of despair, hopelessness, and loneliness.

For a few minutes, I felt more alone than I have in a long time.  I realized that when push comes to shove, my family is “set apart” in many ways.  And although most of those ways can be positive, tonight the negative aspects of being different than the “typical” really hit me full force.  I let the questions, the doubts, the fears, wash over me and engulf me.

Although I love my life very deeply, and can legitimately say that I would not wish it to be different, tonight I was overtaken with grief.  I went into Jake’s room, picked him up from a dead sleep, and sat rocking him, weeping as tears streamed down my face.  My heart, my literal physical heart, was actually aching for him.

I know that Jake is loved.  Deeply loved.  More loved than many people.  I also believe that he has a fantastic community of people surrounding him who will support and encourage him, who will be there for him, and who will love him because they know what an amazing person he is.  But tonight, I let my fears get the best of me.  My fears that he will not be able to make friends easily (which seems ludicrous, since he is such a social little guy).  My fears that people will not want their children to be friends with him.  My fears that he will not be treated as an equal, because he has Down syndrome.

And with those fears, came the tears.  The chronic grief that is such a real part of our experience, reared its ugly head once again.  Sigh…




Posted by on April 15, 2013 in Uncategorized


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10 responses to “And it Rears its Ugly Head…

  1. Janelle

    April 15, 2013 at 6:33 am

    Karyn……tears are streaming down my face! Not because I feel sorry for you but because I can totally relate! I remember being where you are only a few short years ago. If I could say one thing, please embrace your family and the fact that you aren’t “typical”. It is a wonderful thing and God will bless your family greatly because of Jake’s Down Syndrome. I have experienced this in my family! Hugs!!!!

  2. Jenny

    April 15, 2013 at 7:24 am

    Reading this has me in tears as well…Because I have been there. I feel every one of your words. And you’re right, these feelings are a very real part of our experience. And it’s ok to feel these things because we always move past them. Our boys may live a different life than we once imagined, but a fantastic one none the less. I loved the comment above…I am learning to embrace the fact that we are “That family” as well…Our path is different. A little harder at times…But I think it is more beautiful because of it.
    Thank you for sharing your honest feelings. It always helps to know others have their ups and downs along the way too. We are all in this together. Sending you a hug my friend.

  3. ginakilbreath

    April 15, 2013 at 8:32 am

    I get it friend:( I have moments like this too and I think that although they are further apart each time, I will continue to have them for Berlin’s entire life. It’s part of it, I think…, laughter, tears repeat…let the tears come buddy because once they pass then the joy and laughter can return:)

  4. Johanna

    April 15, 2013 at 8:45 am

    Hugs to you.

  5. Brianne Coffer

    April 15, 2013 at 9:28 am

    I love reading about the real things everyone goes through. I think we all, as humans, spend most of our time portraying our lives to others as a walk in the park or nothing but sunshine and rainbows with no rain. But this post is real, bare emotions. Emotions that, I am sure every mother in our position, has had at one point in time. I, unfortunately, get overwhelmed often. I am only 21 with a 3 year old and doing it on my own with the support of my parents. So, I have been down this road a few times. You are blessed with the best. One of the motivational sayings that my loved ones have been telling me since I gave birth at 17 is that God only gives us what he knows we can handle and that God only gives “special” babies to “special” people. I don’t think I am anything special but that sticks with me and gets me over the stream that always looks like a mile wide river.

  6. Andrea

    April 15, 2013 at 10:12 am

    God will look after Jake and God will look after your family. Hold on strong to your faith in these moments and let your worries wash away. Jake has a light that shines so brightly inside him, you can tell he has a very important future planned for him and he is going to impact a lot of people. He is such a beautiful little boy and radiates such sweetness, innocence and goodness, and you can’t help but be infected by it. He always leaves me with a smile on my face and he’s placed a permanent footprint on my heart. Shane even says that Jake gives him hope. We are very blessed to have Jake in our family and apart of our lives:)

  7. Katie Bartel

    April 15, 2013 at 12:59 pm

    I needed to read this today. To know that I’m not alone. Just yesterday a friend, who I grew up with made a comment. She was teaching Sofie and Livi’s 4 year old class at Sunday School and there was an influx of kids because of a special event. Despite having an extra helper she asked me to keep Sofie in the service and out of the class. She didn’t ask me to keep both kids, she didn’t ask the parents of the child with FAS, she asked me to take Sofie, the child with the obvious disability who may or may not be a little extra work to be included. It was the first time someone in my inner circle was so inconsiderate. I didn’t know what to say. The whole rest of the day I kept thinking of her future. If someone who loves us and her can be so inconsiderate, what will the rest of the world be like? Sofie’s 5th birthday is coming up and I’m thinking about her party. Who are her friends? I really don’t know. Does she have real friends? Sofie will have a harder time making friends to begin with and then to have play dates she has to win over the parents too in order for them to be okay with having her over like any other kid. Her sister is the same age but she needs to be independent of her sister sometimes. It is hard and we are all still learning. My husband said it isn’t so much about us learning as us teaching others.

  8. Ruth

    April 15, 2013 at 7:28 pm

    compassion for your son is a wonderful thing!

  9. anna

    April 20, 2013 at 9:20 pm

    Oh Karyn! I go through that grief and worry at least once a month! As alone as you feel (I know the feeling), you are not. And Katie’s husband is so bang on! We are here as families with beautiful children who are not neurotypical. We are here to teach others. xoxoxox

  10. Laura Janson

    April 21, 2013 at 6:34 am

    I have sad days too! I often think, “This isn’t the life Ben was supposed to have.” But I will say that as time passes, those sad days come less frequently. Just last week, I overheard a mom talking about her young son. He was a head taller than Ben and was much more advanced. He turned two last week. It was a bit of a shock to be reminded of how far behind Ben is but I was able to focus on how special Ben the way he is. Deep down I truly feel that Ben’s Down syndrome has changed us for the better.

    P.S. Ben is eating right now and has a messy face just like Jake does in your pics:)


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