Inspirations

I will post an update soon, because its been an incredible past couple of weeks! Today I wanted to share something that has been shared with me lately that has really touched me.  Its a story that describes me to a tee.  Big poppa agreed that it could have been written especially for me.  I kinda felt like it was...

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 special needs children.

Did you ever wonder how these women 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 take notes in a giant ledger:

"Armstrong, Beth: son. Patron saint Matthew

Forest, Marjorie: daughter. Patron saint, Cecilia

Rutledge, Carrie: twins patron saint - gave her Gerard. He's used to profanity"

Finally, he passed a name to an angel and smiles, "give her a special needs child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly. Could I give a special needs child a mother who doesn't know laughter?

That would be cruel."

"But does she have patience?"

"I don't want her to have too much patience, or she'll 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 the sense of self and independence 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 who 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 never consider a step ordinary.

When her child says "Momma" for the first time, she will witness a miracle and know it.

When she describes a tree or a sunset to her 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 everyday of her life,

because she is doing my work as surely as he is here by my side."

"And what about her patron saint" asks the angel.

His pen poised in mid air ................

God smiles. " a mirror will suffice."

new gadgets!

one thing that no one ever tells you when you first start having kids is that you dont need every single gadget out there. oh sure you might use that bouncer once or twice, but you wont need it, and if you dont have it, you wont miss it.

i think the reason that they do that is that for every family (like ours) who bought a bouncer to console a crying baby and used it twice then put it in the closet, there's another family out there whose kid would only sleep while gently being rocked by a bouncer.

anyways, point being is that we have damn near every single baby gadget known to man. swing? got it. bjorn? got it. bouncer? got it. bumbo? got it. bassinet? yup. pack and play? oh yes--actually we have four of them spread out among grandparents. and every one of these seems mandatory...but if we didnt have them, we wouldnt miss them.

now that our kids are growing up, we're starting to think about what to do with all of these gizmos that we have. and we keep thinking about how we need to declutter and simplify...but with that conversation in the back of your mind, please remember a couple of things about the authors:

1) we are not adults
2) we have issues with impulse control
3) lol no again we are not adults

the other day twisty was looking online and she found a therapy swing called a "wingbo". picture is below:

the swing runs about $250 and twisty thought it would be something good for gommy to have. basically it forces kids on their elbows and tricks them into doing tummy time (dommy can do it, he just chooses not to).  legs go towards the back, elbows on the front.the swing can support up to 50 or so pounds. so we talked about it, and thought, yeah we should think about getting one at some point. the 250 was a sticking point with us because, although we can afford it, as you can imagine we have a decent number of medical expenses...so it was filed into the category of "would be nice but still need to think about it"

well it stuck with us. until this past week, when, legitimately, we decided to not be rationale and just buy the damn thing. in essence we put our YOLO hats on and took the plunge and bought ourselves a wingbo.

it got here yesterday, and after assembly we put our little stinker in there for him to hang out while we were getting ready...and HOLY CRAP IT IS AWESOME. THIS GADGET IS THE BEST PURCHASE WE'VE EVER MADE.

seriously. he only lasted about 30 minutes or so, but it was 30 minutes straight of him being up on his elbows, head up, legit tummy time which is more than he's ever done. the poor guy was probably pooped after we took it out of him (a good comparison that twisty made is that he probably felt like he had been doing planks for half an hour). and he was happy doing it! it's now going to replace our excersaucer as his go to hang out place every morning and is going to do wonderful things for his neck and trunk strength.

so the moral of the story? sometimes it's fun to buy things that you never knew you always needed. sometimes they are actually the exact damn thing you needed. sometimes it's ok to lack the ability to control your impulses. and lastly, it's been really hard not to use the phrase "schwing bo" in writing this blog.

lots of good things

the past few weeks have been really good ones for us...filled with lots of good news and good times with our babies. below is a quick recap.

two weeks ago we had the appointment week from hell (meaning not that the appointments were bad, we just had so very many of them). 6 total appointments including one trip to austin. By the end of the week we werent tired of appointments, we were just tired of feedback, if that makes sense. From our observation, therapists typically work from a deficiency perspective...meaning yes your kid has made progress, but now that we're here we still have work to do. And we heard a lot of that that week. Gommy is doing really well, but we want him to do better, which is fine and all, but after a while, feedback just gets old.

so after that we had a good weekend of being outside in the sprinklers, and grilling out, and then we got to this past week. dom's vision screening came back positive--there are no physiological deficiencies. CMV (which caused the PMG) has a knack of damaging the eyes, resulting in scars that limit how well babies can see--but we had none of that. the doctor said that dom had no scarring (YAY!) and that any sight issues he might have are all neurological--meaning that with therapy they can be overcome. he still said that we'd have to do glasses, but let's be honest. i'm blind as a bat and twisty has bad eyes too. glasses were in this kid's future, PMG or not.

so one of the things the doctor told us to do was to take a look at vision therapy as a possibility. so we worked with our case manager, and set up an appointment to have dom evaluated by a vision therapist. we'd also been needing to do an evaluation by a speech therapist, so we decided to do them at the same time (AT THE SAME DAMN TIME? AT THE SAME DAMN TIME!--sorry. that's lyrics from a rap song. my bad).

so we had both therapists at our house, and the first thing that we did was the speech therapy evaluation. the nice lady asked us a ton of questions, observed gommy a little bit...took a few notes...and gave us some information. side note--part of the speech therapy evaluation is based on cognitive skills--meaning can he recognize mommy and daddy, does he react when we're angry etc. so she then told us that 1) he doesnt seem to have any issues feeding, so no need for speech therapy at this point and 2) cognitively he's at about a 7 month level right now, which is just freaking awesome because he's only 8 months old. follow that up with the vision therapist saying that dom seems only slightly behind where he should be but nothing at all to be alarmed about...and twisty and poppa finally got some fantastic news. so much so that mentally, poppa was doing a dance to the following song:

it was a darn good appointment. i think the other best part of the appointment was the therapists and our case manager gushing (i know that's not modest but whatever) about how twisty and i are really doing everything in our power to help our little gommy. i needed to hear that...because this entire time i've been struggling to think about other things that we can be doing. other folks to get involved. to hear someone validate our efforts as being as exhaustive as they can...well that felt good.

so yeah. good appointments. which was then followed up by a good weekend. there's more to detail about other stuff going on in our lives, but i'll do that on a later post.

Eyes and Fro-yo

This commercial made me smile, so I thought I would share.  It feels good to have special needs shown in such a positive light.  I think so many pregnant women fear having a less than perfectly healthy baby, but its the most incredible thing I have done.  Did I want a baby with special needs?  I wanted Dominic and all the crazy, lovable things that came with him.  Each of my men have given me something I needed in life.  Dominic completed that.

This morning Dominic had his eye exam in Austin.  Apparently, congenital CMV can cause vision problems.  The good news is that there is no scarring in Dominic's eyes so he is capable of 20/20 vision.  However, the doctor estimated that his vision was 20/80 right now or worse. The doctor also said that Dom presents with nearsightedness and an astigmatism which will eventually have to be corrected with lenses. I am not sure why some babies this age get glasses, but our doctor wants us to wait until he is around 3.  Right now he can only guess at his vision, and we could do more harm by giving him the wrong prescription.  At that time, I am going to get him the swaggiest baby glasses there ever were.  I wonder if Burberry makes toddler wear?

But on the positive side, there is visual therapy available for kids of Gommy's age to help him both see better and process what he sees better. At this point, the eye doctor thought his vision problems were primarily neurological.

I was telling my dad how our appointment went, and one of things I prefaced was that I didn't know if we were ever going to get "good" news about Dominic anymore, but in our little world this is good news.  It's funny how life changes sometimes.

While Poppa and Dominic were driving back from Austin, I decided to have a special mommy Vincent date.  We went to get fro-yo, and he loved it!  I let him pick out everything he wanted.  You could tell he felt really special when Mommy let him go pick a chair on his own while she paid.  It was pretty cute.  We had wonderful conversations about the yogurt pictures on the wall and how their TV must be broken "uh-oh tv broken!"  He also informed me that he had again kissed Sadie that day.  I am not sure what to do with that boy!  Then a random white, bald man walked in and Vincent said "Hi Daddy".  At first I thought he was serious, but he was using his "joke voice".  Either way, the entire time the man was there, he kept saying "Hi Daddy, bye daddy" and laughing hysterically.  It was pretty funny.

Also, Gommy had one of his voodoo appointments today.  This was cranial sacral therapy.  The premise behind this is that the therapist uses all the connective tissues in the body to navigate through the body and find blockages.  She then makes the brain aware of the blockages and the brain heals the blockage.  Is that not the biggest load of BS you have ever heard?!  I can't deny that something is going on though.  Today she let Poppa feel while he was releasing a blockage and he sure enough felt lots of heat and trembling.  At some point, I will have to post about the rest of the crazy stuff that's been going on at those appointments.

I am surprised and touched by all the views that my blog has had since making it public.  Feel free to message us, comment or whatever.  We are always here if you have questions about our sweet boy.  We obviously love to talk about him:)

Quack Doctors and Death Threats

Twisty here... My goodness how life has changed in the last few months.  When we got this diagnosis, I think I was pretty naive about what we were about to get into.  Although when you sit down with a doctor and they give you that kind of news, I don't think you can fully fathom any of it.  This beautiful new reality has now become our new normal, and I wouldn't change any of it for a second.

We are at the point now where we are willing to try anything and everything to help our Gommy.  He has anywhere from 2 to 6 appointments in any given week.  We have started trying unconventional therapies which I like to refer to as his voodoo treatments.  We also have an appointment scheduled with a homeopath and eventually I want to get him in to see an acupuncturist.  There are no lengths I would not go to for my sweet baby!  We have actually been seeing some results from Cranial Sacral Therapy.  It is generally recognized by the medical community as completely quacky, but I am starting to think there might be something to it.  We have been noticing slight differences in Gommy after treatments from being more mobil to being able to keep his left hand open which is huge!

I hear a lot of people tell special needs parents that God made them special so they could handle everything that goes along with having a special child.  I also hear most special needs parents say that they are just normal parents who care about their kids.  I disagree.  I think God made me especially suited for this purpose.  My family has long joked that I have a heart of stone, and maybe in some ways I do.   I think this is one of the characteristics that makes me a great special needs mom.  I am able to push my kids further if I know it is what is best for them.  I may be a little insensitive, but when I care about someone I care hard.  There is nothing I would not do for my family.  I mean NOTHING.  People say this all the time, but I actually would cut you if you messed with one of my men.  No, take that back, I would BURY you.  Literally.  Again, I know people say it, but I say it while holding a knife.  Haha, just kidding.


But seriously, dont try me.

I also don't tire easily.  I spend every waking minute that I am home working with Dominic and playing with Vincent.  Once they are asleep  we take care of ourselves and our house.  I now work 8-3 everyday so I can get extra time with them.  I also work Thursdays from 5-10.  I wouldn't trade it for anything.  After seeing my new found determination, Big Poppa told me that Dominic was going to reach amazing potential solely because of the love I had for him.  That stuck with me, and I don't take that statement lightly.  It has become my motto, and I think of it multiple times a day.


A couple of quick updates on my boys.  Dominic is almost sitting up on his own and is playing with toys like crazy.  He still favors his right hand but is using his left hand more (if I force it:)).  Vincent is perhaps the smartest two year old alive.  He speaks in paragraphs.  I don't even know if there is any words he doesn't know.  He not only knows his alphabet, but can also identify all letters in uppercase and lowercase.  He got bored with us quizzing him, so he now quizes me.  Bring it Vincent, Mommy invented the alphabet.  He also knows all his colors and can count up to 20, except for 6.  Never six.  It is the devil's number after all.

The other day, I was taking him to school, and he noticed Gommy wasn't in the car.  He asked, "where did Gommy go?" I said, "Gommy is sick, so Gommy is staying home with Daddy.  Remember when you were sick and stayed home yesterday?"  Vincent said, "Oh, Gommy need medicine, how 'bout that?".  Um, yeah Vincent, how about that!?  How does he learn these things?

I will leave you with one last Vincent conversation since nap time is almost over.
Vincent:  Poppa (insert Poppas actual name here), we need batteries!
Big Poppa and Twisty (looking at each other):  Did he just call you Poppa?
Twisty: Vincent, what is Daddy's name?
Vincent: Poppa
Mommy: Vincent what is Mommy's name?
Vincent: Mommy

That's right Vincent.  I will always be mommy.    

"what are you expecting?"

both twisty and i are blessed with supportive parents. case in point is that my mom has worked her connections with pediatric neurologists and geneticists at her place of work to get us more information, and twisty's dad is letting us use frequent flyer miles to pay for our trip to seattle. not to mention the countless appointments twisty's mom has covered for us, and the millions of times she's driven to our house to help us. we are truly blessed with supportive and loving parents.

one thing that i'm sensing as a common theme...well it emerged again today. twisty is in the process of getting us an appointment with a homeopathic doctor in houston, which is cool. another set of eyes to evaluate gommy and more stuff to help. yay. i told my mom that and her first question was "well...what are you expecting out of this appointment?"

i say this as a theme because others have asked us the same thing once we got our appointment at the Dobyns clinic in seattle.

"what are you expecting?"
"i dont want you to be disappointed"
"just know that you're already doing everything you can"

some sort of variety on that theme.

truth be told, twisty and i arent expecting much. we're expecting to ask the same questions to a different group of folks and maybe we'll get different answers out of it that we can say "huh...that's interesting" and go on with our lives.

we're not expecting a miracle "cure" of some sorts. in some instances, we're expecting to create a network fo doctors to help support gommy (and tooties for that matter) as they get older.

but (and i can only speak on behalf of myself here--but i think twisty would agree)...i have this innate desire to feel like i'm doing everything that i humanly, physically, and emotionally can to support my son. and these folks are helping me get more information on how i can do that...so i'm not anxious, good lord no...i get excited about the possibility of talking to a homeopathic doctor. i loved hearing more about cranial sacral therapy from his chiropractor today. i'm THRILLED to go see dr. dobyns in september. i'm not sad that i have to do this...i'm blessed beyond belief that i GET to do this.

isnt that what parenting is? to devote your life to your kids? my spirit is made up of a holy trinity of twisty gommy and tooties...and these appointments mean i get to focus on a core part of who i am. i genuinely mean it when i say that if a doctor said "hey poppa, there might be something that could help gommy in your left pinky, but we'd need to cut it off in order to check it out", i wouldnt hesitate in the slightest bit and immediately go buy a new pair of gloves.

there are no expectations here...except expectations that twisty and i have on ourselves to do everything...EVERYTHING...in our power to support, nurture, and love our sons. these appointments are just an extension of those feelings, those emotions...that innate desire to do everything that we can.

God put me on this earth to be a husband to twisty and a father to tooties and gommy. My expectations are to meet His expectations by fulfilling my role.