poem

i recently came across this poem.....

GOD KNOWS A GOOD MOTHER
by Erma Bombeck


Most women become mothers by accident, some by choice, a few by social pressures, 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, Matthew.

"Forrest, Marjorie, daughter. Patron saint, Cecelia.

"Rudledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity."

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 a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too 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 it 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 than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will not consider a 'step' ordinary. When her child says 'Momma" for the first time she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"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 she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. " A mirror will suffice."



i really liked certain parts of this poem...i don't think im a saint or anything, lol...but the part in the poem that says: "She will never take for granted a 'spoken word'. She will not consider a 'step' ordinary. When her child says 'Momma" for the first time she will be present at a miracle and know it!".....that part made me cry.

some equipment advice please....

so milo's birthday is coming up soon and im hoping it will be a chance to get a few much needed things that i have been putting off for financial reasons.

i have a general idea of what im looking for but am sort of lost on where to find what i need, what works best, etc.... so, here's what im looking for:

we need a high chair that is going to work for a one year old with very limited head control and so so trunk strength.

we would like to find a stroller that milo can sit upright in, or at least an attachment or something to put in the stroller that will help hold his head and body upright.

we need a really good, really comfortable, really supportive baby carrier...kind of like a snugli, or baby bjorn...but better.

that's all i cant think of right now, but i would also love suggestions on any equipment, activities, toys, whatever, that made life easier at this age...(keep in mind that milo has very limited vision as well). thanks!

help me decide....

my dad and step-mom came to visit over the weekend. they live in maine and try to get to dallas every three months or so. it was a really nice weekend, and it really reminded me of how much milo has changed and how far he has come since the last time they came...he has really progressed alot and i am so proud.


on an unrelated note...i've been shopping around for a cute halloween costume for milo...i'm really excited about his first halloween and can't wait to take tons of really adorable pictures!!
so far i kind of like this little batman costume,

and this darth vador costume....

but i also like this monkey costume

and this bat costume from old navy...

any opinions? lets take a vote on which is the cutest!

the whole story

when milo was born six weeks early we were told that he would probably stay in the nicu for a couple of weeks so that he could get the whole "suck, swallow & breath" thing figured out...he had some respiratory distress during labor, but no one knew that he had any damage to his brain until months later when the seizures began (although there were signs that things were off, such as his super fussiness and feeding difficulties).

they discovered pvl when he had a cat scan at the emergency room....when they told me that milo had periventricular leukomalacia i of course had no idea what it was. they gave me a little write up about it and said to find a neurologist...then sent us on our way. on our way home from the hospital i read the piece of paper not knowing how big this news was....it talked about a possibility of vision impairment, a possibility of cerebral palsy, a possibility of mental retardation...i immediately went into denial. i didn't want to know anything about pvl. i didn't look it up online, i didn't want to talk about it, i didn't want to think about it, i just wanted it to go away. milo was just a preemie and he was just behind but he would catch up and that's what i told myself for about a month and a half. milo's doctor at the time didn't seem too concerned about the pvl...and we couldn't get into see a neurologist for about two months, so it was pretty easy for me to just pretend like it wasnt happening.

then one night jesse was at work and milo was sleeping and i hesitantly started to look up information about pvl. it was like i opened the flood gates....i couldn't stop. i was pvl obsessed. it was very emotional...i was google searching and sobbing simultaneously. i was hit especially hard by the pvl yahoo group...as i was reading the posts written by parents my denial was forever gone. and then i started to realize things that i had never allowed myself to realize before. i realized milo couldn't really see, and i realized that milo had cerebral palsy.

for weeks my free time was spent researching and crying. although it was alot easier being in denial milo needed me to advocate for him and so i did. i became pretty familiar with the other stages of grief...but as time went on i began to heal...and im still healing.

i have my bad days and moments where i begin to cry out of the blue. i have a hard time watching little boys run around and play, and i avoid looking at pictures of my friends kids on there myspace and facebook pages...it just still feels too bitter and i feel bad about not wanting to see my friends beautiful children who they are as proud of as i am of milo....but i cant help it, its how i feel. but my good days and my good moments far outweigh the bad ones. i adore milo. he is the love of my life...i am so proud of him constantly, and every time he does something new it is so exciting and we have so much fun together...especially now that hes starting to get past the super fussiness...and i'm finally at a place where instead of feeling sad for all the things that milo might not be able to do, i'm taking it day by day and celebrating what he can do and all of his accomplishments. the dust is settling.

ch-ch-ch-ch-changes...

milo has been changing lately, in a good way. most of his early months he spent being fussy, irritable, uncomfortable, and just pretty much inconsolable. over time things gradually improved, although many more obstacles were thrown his way, such as seizures, feeding tubes, etc... but my point is, although his mood gradually improved to an extent, up until the last few weeks i wouldn't have called milo a happy baby....and it broke my heart. he liked to be held, but never wanted to cuddle. he cried, a lot. he arched. he screamed. he fussed. then all of a sudden....everything changed. he wants to snuggle all the time now (and i love it). he is more relaxed, more easy going, and more comfortable in his own skin. he seems content, which makes me content. there is still a long road ahead of us, but for right now we are enjoying our triumphs...and i am enjoying my happy baby.

home sweet home

we are home at last! milo got discharged yesterday and so far so good....he still has a little cold, and is on antibiotics for his infection but all and all i think he is feeling much better. i'm trying to get him back to his normal routine...and i am really looking forward to this weekend so that dad can take over a bit and i can get a little break...a whole week staying at the hospital with your kid along with a nasty cold really takes it out of you.

i was so tired last night, and it was really difficult to get him to go to sleep because his routine is so messed up...and i momentarily felt really defeated, like i just couldn't do it and there was no way i was going to make it through tomorrow...but then i snapped out of it...and i got him to sleep, and the day is half over today and i've made it through just fine.

ugh....still staying at the hospital

well....i went ahead and unpacked my stuff today at the hospital so that it wasn't in an annoying pile in the middle of the floor anymore. looks like were going to be there a few more days. milo is not yet tolerating his feeds and it looks like he did catch my cold, so, that will probably slow down his recovery. i'm so tired.

another update....

milo was sent home saturday afternoon from the hospital....and everything was seemingly okay, but a couple of hours after we got home things went downhill....he was very very fussy ang crying alot, and his cry was not his normal cry, it was very high pitched, so i started getting concerned.

i began taking his temperature and it was just below 101 and we were supposed to take him to the er if it was over 101...so i gave him some tylenol to see if that would bring it down...and it did, a little, so we decided to wait it out a little longer, (even though my gut told me we were going to end up at the er)...and at about 9 pm his temp spiked up to 102.2, so off we went to the er...where we stayed for 11 long hours (i actually only stayed 8 hours, i went home to get some sleep once we found out for sure that he was getting admitted).

they have run tons of tests, he has had x-rays and a sonogram...and it looks like everything with the tube is okay, its in the right place, there is no abscess or anything, its just a run of the mill infection, which he's being treated for with antibiotics through an iv....and as soon as he is tolerating feeds and does not have a temperature for 24 hours he can come home....so i'm hoping tomorrow.

to top it all off i started coming down with a pretty bad cold yesterday...so that makes staying in the hospital extra fun...my hands are practically raw from washing them and hand sanitizer as i try to avoid passing my cold on to him, because that's the last thing he needs right now...so keep your fingers crossed for us that all goes well and we get to come home tomorrow.

quick update

i just wanted to post a very quick update....milo's surgery went well and he is at the hospital recovering...i will post details and pictures in the next day or two when i have more time. also, thanks to everyone for keeping us in your thoughts, and for your words of support...my friends and family are the BEST, and i honestly don't know what i would do with out all of the support and wisdom of the moms out there who's blogs i follow, and of those who follow mine, your advice and encouragement mean the world to me...really.

milo's surgery

well, milo's surgery (to place his g-tube) has rolled around again....we could not do the procedure the first time around due to a piece of bowel or intestine obstructing the path....but this time it should definitely happen because there will be a surgeon assisting our gi doctor...his surgery is this thursday, on september 11th....and i'm still waiting to hear from the hospital to find out what time we need to arrive, but since milo is so young i'm sure they will schedule us nice and early. we will be staying at the hospital (children's medical center) for a few days following the procedure. so wish us luck!