Talked to the doctor today, they didn't touch base with the Surgeon today (ok yesterday), but plan to tomorrow (today) first thing.
I called tonight to check on William as Rob was just to tired to watch Micah, so I couldn't go up there this evening. The nurse said he was so awake and moving and looking around from about 8pm till about 11:30pm and then crashed hard.
PS/Needs:
If anyone can help watch Micah while I visit William in the evenings from about 9pm - Midnight it would be greatly appreciated (Robs back working and needs his sleep).
Also, I need to start visiting during the day when they OT (occupational therapist) and ST (speech therapist) are working with him, so I can learn the exercises, and how I can help him. This would involve watching both Micah and Tommy so I can go to the hospital, and needs to be between 8am and 4pm (usually only for ~2 hours with some flexibility when it's scheduled) Would be good for it to be from 7:30-9:30 or 10:30-12:30 or 1:30-3:30 (not all of those), just one a day and would be good if it could be the same one each day. Let me know if you can help with one of these on a regular basis (till William goes home in 1-3 weeks) or even a one time basis.
Also, things are still very stressful dealing with still having a baby in the NICU, and I'm so thankful for the meals that have been provided for our family already they have been such a blessing already. If you feel called to provide a meal for us we certainly wouldn't turn it down. The need will probably be greater when William comes home as we adjust to having him home, but it certainly wouldn't be unwelcome now with all the back and forth visiting we are doing.
Mother of a "Special" Child
When I was young, I'd often say,
I'd like to be a mom someday
While playing with my baby doll,
I thought that job's not hard at all
I'd have a baby, maybe two,
a girl in pink...a boy in blue
Well I grew up and sure enough,
I'm now a mom and gosh it's tough
The baby that was sent to me,
was born with disabilities
At first I'm frightened through and through,
there's much to learn to care for you
This wasn't in my plans at all,
when I was young and played with dolls
Your mind and body were so weak,
you might not ever walk or speak
So much special care required,
I'm often scared and often tired
As months and years go slowly by,
I smile a lot but sometimes cry
To watch you grow and not complain,
though you endure your share of pain
Oh, how I'd hold you and I'd pray,
that you'd be healed and whole someday
But I knew that was not to be,
not physically or mentally
And so I taught you best I could,
your progress wasn't very good
But then one day I realized,
as I gazed into your loving eyes
That I had learned so much from you,
determination...courage too
A love so unconditional,
it floods my soul and always will
I'm proud to say I gave you birth,
for you're an angel here on earth.
God Choose a mother for a "Special" child
Most women becaome mothers by accident, some by choice, a few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjotie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But she has patience?" asked the angel.
"I don't want her to have to much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
And what about her Patron saint? asked the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."
6 comments:
Hi Lydia,
I don't know you much, but I do feel called to bring you a meal. Moms of newborns have a special place in my heart and I'd love to bring you a little something. Here's my email lori at lbpublicrelations dot com. Email me and we can work out some details.
Hugs, Lori
Lydia-- If I was local, I would watch Micah and Tommy in a heartbeat! Those cuties! You and your family remain in my prayers.
Gwen
Lydia,
I know how hard it is to be at home knowing you have a LO in the NICU. I want to help I just don't think I have confidence to be able to watch both boys and also take care of my 8 mo DD all at once (even for just 2 hours). Is there someone I can jobshare with?
Maria
Hey Lyddie~ Man, (and you can tease me about this all you want) right now it would be good if I were living in Texas...could help out with the boys. Know you, Rob, Tommy, Micah and William are definetly being lifted up by me daily. Love you all tons, please give my greetings and love to Rob and the boys, love, Kati
I would love to help; I'll get with Helen from MOMS club and she'll get with you. I have a friend from bible study who is out of work right now (company was just downsized) so she is bored during the day and can help too. My e-mail is; KPfister11@aol.com. I can help with the evening shifts if you can bring Micah to my house (I live not too far from the hospital) I can watch him. Know you are in our prayers and are being lifted up by several families in our bible study as well.
Kara Pfister, MOMS Group
KPfister11@aol.com
214-274-9400
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