Sad post...

This is my favorite song for a trial

"On the Road to Beautiful" by Charlie Hall.

I crumble at Your kiss and grace
I'm a weakling in the dust
Teach me how to cling to You
With all my life and all my love

Father come to me, hold me up 'cause I can barely stand
My strength is gone and my breath is short, I can't reach out my hands
But my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing

And on the road to beautiful
My seasons always change
But my life is spent on loving You
To know You in Your power and pain

Father come to me, hold me up 'cause I can barely stand
My strength is gone and my breath is short, I can't reach out my hands
But my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing

You're my portion in this life
You're my strength now in my fight
And to You I pledge my heart
In the pain and in the dark I'll love You
I'll love You, I'll love You

I'll love You...

Father come to me, hold me up 'cause I can barely stand
My strength is gone and my breath is short, I can't reach out my hands
But my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing

And my heart is set on a pilgrimage to heaven's own bright King
So in faltering or victory I will always sing
I love You

So. I had a weird day. Sometimes it's just the little things that set me off. I got off work a little early, but as I am on my way out the door, the sweet girl at Starbucks says to me, "When are you going to bring your baby up here for us to see?" I politely said (for at least the 5th time to her in the past week) "My baby is still in the hospital." Not to mention, even if she were out of the hospital, she won't be going anywhere. As soon as I got out the door, I burst into tears. I don't know what was different today, but I do not need to be constantly reminded that my beautiful baby girl is now 74 days old and has never slept in her fairy princess bed. She hasn't been able to use her giraffe swing, or ride in her pink car seat. I know people don't know how to react to my situation, but why can't God just help me out and close their lips every once in a while? Most days it's no big deal. I don't mind to tell people about my little girl. But today.... ugh. I cried for a solid 30 minutes.

TLC this week was about NICU emotions. One of the things that really hit home for me was the fact that all NICU moms need to go through a grieving process. Not to grieve for their baby, but to grieve for the loss of their dreams. Grieving that you never got a big belly that people wanted to touch. Grieving that you didn't go home from the hospital with your nurse pushing you down in a wheelchair with a baby in your arms. All the things people usually associate with pregnancy. Sometimes the loss of a dream, the loss of experiences is something we never think about, but it is very real. For me it really hit home today. I feel loss for the fact that no one will ever get to peek in her stroller at the grocery store and tell me how cute she is. The loss of my maternity leave to be with her. Today my loss was apparent to no one but me. Every day I leave work and go past the untouched nursery to go shower and change clothes so I do not bring infection into the NICU. Most days I am OK with that, but I want God to filter some conversations for me tomorrow, give me a break.

How Can I Help? Twenty Do's and Don'ts When Talking to Parents of a Preemie Baby

By Menetra D. Hathorn, author of A Mother's Diary: How to Survive the Neonatal Intensive Care Unit

Advice on what to say and do (and avoid!) when your friend or relative has a baby in Neonatal Intensive Care Hospital (NICU).

What's more disheartening is that even after we go through all of the explanations, it often seems that the listener's response is still a perpetration of some myth or misperception about preemies. Perhaps the most popular one is, "How much does she have to weigh before she can come home? 4 lbs.?" I heard this several dozen times while my daughter Rayven was in the hospital. She spent the first three moths of her hospital stay on a ventilator (A breathing machine) which meant she was incapable of breathing or eating on her own, so it didn't matter if Rayven weighed 4 lbs. or 14 lbs.! She wasn't coming home!

Please don't fall into this trap. It took all I had not to roll my eyes and lecture my inquirer because of their ignorance, and this is only one of the many pitfalls to be avoided. Because there are so many, I have included a long list of do's and don'ts to help you.

1. Don't judge the parent's reactions. There is no right or wrong way to deal with a premature birth.

2. Don't compare the baby's needs to those of a full-term baby OR to other preemies.

3. Don't just say "Call me if you need something." Do something! You can provide dinners, do yard work, go grocery shopping, offer to drive them to the hospital, and/or clean their house.

4. Be available when parents ask for help. If we ask for help, that means we needed it a long time ago.

5. Don't discuss the possibility of death or severe complications unless the parents initiate it.

6. Be inconvenienced. Helping someone should not always be bound by our comfort zones and busy schedules.

7. Buy appropriate gifts for the family, such as disposable cameras, calling cards, rolls of quarters, snacks, magazines, photo albums, journals, scrapbooks, and gift cards.

8. Support and praise a mother who is pumping breast milk during the baby's hospitalization. If is very difficult to maintain a milk supply when the baby is unable to nurse directly from the breast.

9. Baby-sit free of charge if the parents have older children. You can do this so parents can visit the hospital together or go out on a date.

10. When asking about the baby's progress, always listen carefully to the parent's response. Then, the next time you speak with them, refer back to the last thing they told you.

11. Offer encouragement during setbacks and gently remind parents of previous obstacles the baby has overcome.

12. Don't ask "when is she coming home?" The parents want eth baby to come home too, but there are no quick fixes in the NICU. Besides, they will let everyone know when the time finally comes!

13. Don't be fooled by smiling faces. Just because the parents are smiling doesn't mean everything is going well.

14. Don't offer too much unsolicited advice.

15. Show interest in the baby and the parents throughout the hospitalization and after the baby has been home a while.

16. Make sincere compliments about the baby whenever you're visiting the hospital or looking at photos.

17. Don't compare their experience with someone else's hospitalization.

18. Offer a hug when the parents are expressing grief.

19. Avoid discussing disappointing news or concerns within hearing distance of older siblings. The older children are suffering as well.

20. Nicely recommend that counseling be sought when parents show signs of losing control.

If you have already done a few of these "don'ts", try not to worry about it too much. Most parents understand that it's difficult for you to know exactly what to say and do.