You can't leave me.

I know I am not the only Mom who experiences this. Whether your child is an infant, a teenager, an adult- if the possibility exists for them to die- to never be in your arms again, you look at them- or a photo of them- and you wish you could stop time... or that time, in the photo. To hold them in your arms, to hold that moment and never step forward.

God, I get so scared.

Scared knowing how in love I am with Gabriel, my littlest hero- and knowing how quickly and painfully life can disappear out of your arms forever. I am reminded of this constantly, being where we are.

I haven't talked to anyone at the Ronald McDonald House since we got back from Boise. I can't.

The pain that is left in my heart from the losses we experienced leaves a fear that is so close to home that I cannot address it yet. That is mine to deal with, and no one can help me through it except Jesus.

When there is nothing to do except to watch your infant, your toddler die- and you have to face that bravely with a face on that shows everyone what they need you to be- that is too much to watch someone go through.

I am weak. And I realize that every time I avoid a conversation with someone at the Ronald McDonald House.

I feel so horrible, being that person that doesn't want to get to know someone because I can't stand to watch them go through pain. I can't stand to lose another little person that I love so much, especially not Gabriel.

We have weeks. WEEKS. His surgery in Seattle was scheduled for March 9th. And he can't wait much longer if and when we go to Boston, the signs are all showing up, rapidly. My son will die without his next surgery- and I don't want to do it.

I do not want to do it.

I don't want to hand him over- not knowing if I will hold him again. I don't want to watch him recover with so many bumps and potholes in the ride. I don't want to worry that after all this I might have arms yearning for my second son.

I can't prepare for this one. There is nothing in my body that I am capable of drawing upon that will prepare me.

I can post this on my blog, because I don't have to see your faces, you don't have to see mine. But I can't talk about this, because the amount of fear that I have is at an all time high.

But the amount of hope I have is still greater. I suppose that is what matters, in the long run.

My hope for my son is much greater than my fear for his well being.

I need prayers- as we are packing up our Ronald McDonald House residence. Prayers for peace, hope, and for path to Boston to be paved gently and smoothly. It would be really nice if the trip was paid for so that the burden of finances was a little lessened for the moment.

So pray for that too.

And to whoever reads this... thank you.


kim said...

I felt those exact feelings...like no matter what we choose...we risked losing our precious boy.
I know its hard, I know.
I will be praying.
I have a few tips on lowering costs...please email me anytime.
I have friends in Boston, (who also have kids with DS) I can connect you with for help.
AND Will and I will be in Boston for a check up in March...
If it ok with you I will ask for prayers from over 500 prayer warriors that follow Wills carepage...but I wont do that without your permission first.
remember, you are not alone.
kim, aka Wills mom kknipp@kc.rr.com

Mandy said...

Hi Julia. I am so glad he is going to have his surgery. I don't know much about HLHS, but I am assuming this is the second of the three surgeries...from what I know about Bowen. But, I just want to say that I love your little guy and I am so grateful that you share his life with us...even though you don't know me. And, I am praying and am so grateful that the Lord will give you what you need when the time comes. :-) But, I understand how you feel...the fears. I am praying.

Anonymous said...

Hi Julia,
I have been reading you blog. I found it from a link on the Baby Center Ds group. I will keep praying for Gabriel and your family. My son is 6 months old and also has Ds.

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