Tuesday, February 12, 2013

Finding Help and Encouragement

Words were typed into a search engine yesterday. And that search brought someone that is desperately hurting to Life with Jack.

"i regret saving my baby"

Oh how my heart broke when I saw those words. For this person. For whatever their situation may be. This is real life folks, and parenting is not easy, especially children with chronic health problems. I hope and pray with every ounce of my being that my website is an encouragement to whoever happens to stumble upon it. I hope I've been honest enough to show that yes, it is very hard. But in the end, it is oh so worth it. 

To those in the midst of making difficult decisions or those that are in desperate need of encouragement, I want you to know that you are not alone. With challenges come so many blessings (even though I know it can be hard to see). If you need help, there are places to go and people ready and willing. Please take these feelings a day at a time. Please, please contact me if you want to chat jessi@lifewithjack.com

Where do I find help and encouragement?

1) My faith. One scripture that came to mind while I was writing (one of my favorites) is Psalm 121. When I am feeling the weight of the world on my shoulders, I hold these words close.

2) This preemie community. Yes, I count you all as one of my greatest comforts!

3) Lately I've found a lot of encouragement through the the website Not Alone and their FB page. I especially loved reading this post the other day, titled "I give you permission"

"I give you permission to be tired.
I give you permission to cancel a therapy session.
I give you permission to feel weak.
When it comes to your child with special needs, I give you permission to allow a little grief to co-exist with other emotions like love and joy."
4) And as cheesy as it sounds, words and quotes from those who have been through immense tragedy and loss always seem to put things into perspective for me.

From one of my favorites:

Yes, there is HOPE, even when we can't see what's ahead.

I'm not naive enough to think that reading some words will magically make everything better, but it's a start. And if parenting a special needs child has taught me anything, is that you have to take care of yourself and get rest. The world looks pretty bleak when you are exhausted. My other two cents? Surround yourself with positive people. If you have no one around you that fits this bill, there are so many amazing people online, just waiting to help.

Preemie mama friends - what have you found helpful in your own journey? Any suggestions or other great organizations/resources? How do you cope when you you are feeling despair and heartache?

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Melissa said...

I had an informal peer-to-peer support person, who rescued me from the pits of despair when my daughter was in the NICU. She was also raising a preemie surviving twin, and our friendship and endless email exchanges got me through the 5 months in the NICU. Now, I know that Hand to Hold has launched a peer match program to do exactly that. I think having a been-there/done-that support person is incredibly helpful. http://donate.handtohold.org/site/Survey?SURVEY_ID=1381&ACTION_REQUIRED=URI_ACTION_USER_REQUESTS

Jessi said...

Yes, Melissa - thank you! What a great resource. Perfect.

Anonymous said...

I've never regretted saving our son, rather I feel guilty when full term babies die or have major health problems! Experience Survivors guilt more often than I would like. And no one seems to understand!

Tricia said...

For me it's been finding the preemie community. I don't "know" any other extremely preemie moms - despite joining a twins group.

So being able to share and hear stories has been incredibly helpful.

Jessi said...

I know what you mean about survivors guilt. I've felt it, too.

Rose said...

The Serenity Prayer has helped me a lot from the NICU until now.

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

I think prayer and faith are a big part of how I deal with being a special needs parent. I may not be strong enough alone, but with God I have the strength.

Also writing down how you're feeling or talking it out with someone who can understand or relate or who is a good listener really helps when you are having a difficult moment. I have found that people who have been through something similar are the ones who are easiest to talk to about it.

Kyeong jin Lee said...

Hi. Jessi.
I'm Kyeong Jin, 25 weeker's mom(now she is 10month adjusted). First of all i really appreciate all of your postings, include this one. Those things comfort me a lot when i tumble down.. actually my little one born in south korea when i visit my hometown and then we've came back in US 2 month ago.. It took a year for coming back home with my fragile daughter.

I would like to ask you that let me translate this post and introduce to my korean preemie community. In Korea, there's not many survivor who are micro-preemie rather than US, also only 10 or so years history to try saving little babies under 1kg. Even no one seems to care about preemie mommy's feeling.. So i really want to share this post with my Korean friends.

Sorry for my limited English, but I will try to translate all your words correctly if you allow that. Thanks a lot, Jack's family.. I continue to pray for your family..

Jessi said...


I love that prayer. And I agree, writing (for me, blogging) has been such a healing and therapeutic endeavor.

Kyeong jin Lee,

Thank you! And yes, I would be honored if you translated this post! Go for it!