MOTHER GUILT

I have it.

I have it when I am in the PICU with Ben.

I have it when I am home with my other children.
I do the best that I can.

I try to balance both places.
But no matter how hard I try....

Mother Guilt is always there.

To make things worse?

People love to tell me what is best.
(and they aren't afraid to say so either)
Most times they allude
to the fact that I spend too much
time in the hospital with Ben
and not enough time at home with my children.
My answer to that?

WALK IN MY SHOES!

Let me watch YOU as your child is struggling to breathe and is so helpless, who is screaming in such pain because the team of doctors are trying to shove a cuffed trach into the little hole in his neck for two hours, just so that he can get the urgent respiratory support that he needs. Let me watch YOU as you see him struggle to catch his breath when he goes into his awful coughing spasms, or stand there constantly suctioning all of his secretions from his trach, mouth and nose for hours on end. Let me watch YOU observe the 15 IV attempts that it took to finally get just ONE in...knowing that the IV probably won't last through the night but the bruises left behind will probably last 3 weeks. Let me watch YOU learn how to read the vent that helps your child to stay alive, worrying about all the different numbers and functions. Let me watch YOU as you constantly have to be on gaurd to make sure that your child is getting the right medication at the right time and in the right doses. Let me watch YOU make the daily difficult decisions that I have to face every day that I am here. Let me watch YOU as your heart bleeds for your suffering child while you realize that the only thing you can do is to climb up into the bed with him and wrap your loving arms around his broken body as the tears fall silently from your eyes. Let me watch as YOU listen to all the different alarms that are constantly going off in your child's room, not always knowing why? Let me watch YOU as the doctors and nurses talk to you about hard topics, such as DNR's and life expectencies. And let me watch YOU WRAP all of this up in your brain just to wonder if you would see my life a little differently.
I am a mother. I am a mother to three, healthy, normal children. I am a mother to a medically fragile child with multiple problems. When I am home, my three healthy children require most of my attention, while Benjamin takes a very quiet back seat. When I am in the PICU, my medically fragile child requires a lot of my attention, while my three healthy children understand and wait patiently for me to slip away to home when I can.

Living this life is not easy,
But we are happy living it.
It's a learning process,
and I have learned a lot.
And I LOVE that HE
trusts ME enough to do what is best
for each one of my precious children.