I stubbed my toe this morning. It hurt and I cussed under my breath (ok, maybe not so much under my breath). When the pain subsided, and I was fine, I had a thought that really surprised me.

I don’t want Grayson to ever have to feel the pain of stubbing his toe.

What?! That was a really random thought, I thought. Have I really become that mommy, the one who is horrifed at the thought of her child in any sort of pain, no matter how minor and short lived? Maybe.

Maybe it’s because I feel guilty- guilty that in his four, almost five, short months on this earth, Grayson has already had to endure pain- he’s had several IVs which took several attempts to insert correctly, two spinal taps (one successful), routine vaccination shots, and last Friday, he had to have FOUR vials of blood drawn, and in the process blew three veins. Four vials of blood at a time seems like a lot for an adult to have drawn, let alone a confused, hurting, screaming infant.

I know I shouldn’t feel guilty, that it’s not the appropriate emotion, since all of this pain has either saved his life, is preventing life-threatening diseases, or is helping diagnose what is wrong with him so we can help him live a productive, happy life.

And he is happy, laughing more and becoming more and more curious about his world every day. Just like I have no lasting pain from stubbing my toe this morning, Grayson doesn’t remember the needles, the blood, or the stinging. Even the bruises on his little arms are gone. He’s ok.

When I taught 4th grade, any time one of the kids was “hurt” at recess (a scrape, a bump, or a scratch) my standard reponse to their pitiful complaining was, “Oh, just go put some water on it.” Usually, a wet paper towel on their skin had magical healing powers. I wish I had a magical wet paper towel right now that I could wipe on Grayson’s eyes to make them see, to wipe on his neck to make it sturdy, and to wipe all over his future to prevent hurt feelings, broken hearts, and pain.

But I don’t want Grayson to be a wuss, either. I want him to get a scar that has a really cool story behind it, to spend his summers with skinned knees and dirty hands, and for him to ask out that cute girl in his class even though she may reject him.

So I guess this is normal for being a mom- knowing in my head and heart that my child has to hurt sometimes in order to heal, and to bleed to become tough. But that doesn’t make it any less hard, and heartbreaking, to see him go through it.

When we leave the house, our 3 little dogs stay in a big crate. They are totally fine in the crate, and a lot of times will go in there on their own. But when we come home, they go NUTS. We can hear them start barking when we pull in the driveway. This used to just be an annoyance, but now it presents a problem if Grayson has fallen asleep in the car and we don’t want him to wake up.

The obvious solution…Bark Off! As seen on TV, Bark Off is guaranteed to…

A few weeks ago, I was at WalMart, exchanging diapers (they will do it without a receipt, unlike Target and BRU) and I see BarkOff for $9.97. So I jump at the chance to come home to a peaceful, quiet house with well behaved, calm dogs waiting patiently in their crate. Ha.

I’ve used Bark Off for 2 weeks now. To be fair, the instructions did say to be patient and give your dogs time. Time to clue in that the high pitched, ultrasonic, inaudible to humans sound is dogspeak for “Shut the hell up!”? Well, I’ve given it time. Either my dogs are idiots or this thing just doesn’t work. THIS is what I come home to now:

The bugs are Grayson’s feet!



My two Valentines



I wrote this post a few months ago, but didn’t publish it until today, because Grayson’s story is featured today on another blog and I wanted to link it to that. When I wrote this, how I feed Grayson was an incredibly emotional issue for me and I was dealing with a lot of guilt and feeling like a failure because I wasn’t able to breastfeed him. Since then, we’ve moved on to other issues, both serious (his developmental and vision issues) and not as serious (but SERIOUSLY, dude, when are  you going to sleep through the night?!). I hardly ever think about breastfeeding anymore- and a few months ago there’s no way I would have believed I would ever be at that point. So I just want to say to anyone who may be struggling with any feelings of guilt and regret as to how you are feeding your baby, it DOES get better…I promise. As long as you are loving that baby with everything you have, it really doesn’t make that much difference where his food comes from.

If you know the story of Grayson’s first few weeks of life, you know he had some eating issues. Specifically, he was not getting the food he needed from me, which made him a very sick little boy. Of course, as a mother, this brought on tremendous heartache and guilt, and the first 4 weeks of Grayson’s life were probably the most physically and emotionally trying time of my life. At the end of Grayson’s fourth week, I stopped trying to breastfeed and pump. It was an extrememely difficult and emotional decision, but it was the best decision for our family.

• I 100% agree with all the doctors, lactation people, and breastfeeders that “Breast is Best”. In a perfect world, Grayson would be breastfeeding right now. But it’s not a perfect world. And though breastmilk provides optimum nutrition, formula works pretty great too- Grayson is growing, happy, and look at these chubby cheeks!
• When I have another baby, I will absolutely give breastfeeding another shot. I will also supplement with formula at first though- we aren’t going through this again.
• There are some advantages to formula feeding: Daddy (and whoever else) can feed Grayson, I know EXACTLY how much food my baby is getting every feeding, I’m not strapped to a torture device pump every few hours, and I don’t have to deal with exposing myself in public.
• Yes, formula costs money, but there are some great coupons and Grayson now eats Target brand formula, which has the exact ingredients as the name brands, but is almost half the cost. Also, for most people, breastfeeding is NOT free- breastfeeding pillows, bras, tanks, pads, creams, pumps, storage bags, lactation consultants,and prescription meds if you have a problem- all cost money.
• FEEDING THE BABY is the whole point of well, feeding the baby. I have to remind myself of this daily.  It’s not about ME, it’s about Grayson. I have to let go my pride about this, and I am still struggling about what people think about me because I am formula feeding. It’s getting a lot easier though.



Grayson’s cousin Cooper feeding him on Christmas Eve



Controversial Old Navy onesie…I think it’s pretty cute!

If this baby didn’t have the life before, he sure does now. We had a meeting with the OT this morning and among other things, she gave me a lesson on infant massage. The massage is supposed to help with Grayson’s awake time and allow him to tolerate more “active alert” learning time.

We stripped his pants and greased his little legs up with olive oil (which by the way, smells great and is very absorbant, so it doesn’t leave a greasy mess when you’re done). She taught me the different techniques to use on his legs and feet- this is all we are starting with, and next week we’ll move to arms and tummy- she didn’t want to overwhelm him (or me).

G loved it! He smiled almost the whole time and I really felt him relax with the strokes. Ms. Joan (the OT) wants us to do the massage exactly the same way and same place every day. She said that for babies, especially with vision issues, predictability is key and will build their confidence and awareness of their own bodies.

I’m excited to add massage to our daily routine- it’s just too bad we can’t do it on a tropical island somewhere, sipping pina coladas!

My body changed…

Poor pants with no body able to fit into them



Yay Bodily Functions!

 I change my clothes…


Spit Happens

 I change the laundry…

The not so fun part of sweet little baby clothes

I change sheets…

I change batteries…

Our favorite battery-powered lifesaver

I get change back…

I am trying hard to stay away from this one!

And of course, my heart and priorities have changed forever…



I think my 2 Gs kind of look alike in this picture!



The title of this post was originally “Feeling Overwhelmed”. I started to write it after the vision teacher left this morning, leaving behind piles of “visually stimulating” materials next to the pallet of boppys for tummy time that we are working with for Grayson’s OT. Grayson was asleep, again, on his tummy- seems like the last few days have either been him screaming on his tummy or falling asleep on his tummy (worn out from all the screaming). Anyway, tears in my eyes, these were the first few sentences that I had written:

It’s kind of all hitting me right now, and sinking in. Our life is different now. We’ve had a doctor’s appointment and three therapy sessions this week. I want to go back to a few weeks ago, when we spent our days cuddling positions that made Grayson happy instead of positions that help develop his core, where he could nap as long as he wanted in his swing instead of keeping him up to work on his neck muscles, and when we squeezed in tummy time when we could, but if we skipped a day, no big deal.

I was going to continue writing about how I felt after my conversation with the vision teacher about coping with having a child with a disability, and how hearing someone actually say the D word when talking about Grayson was really overwhelming. Then I was going to write about Ryan texting me that the MRI was actually more expensive than we were quoted (how can they do that by the way? ugh) and how that made my stomach drop and me cry even harder.

But then Grayson woke up, and started to fuss. I just couldn’t listen to the tummy-screaming at that moment so I picked him up, lifted him in the air, and sang “Doo, doo, doo, doo, doo”. Well, apparently to a 4 month old, “Doo, doo, doo, doo, doo” while being hoisted in the air is freakin’ hilarious. He laughed. He didn’t just smile and coo like he normally does when he “laughs”,  but this was a true belly laugh. So we kept doing it. And it was funny stuff. And it made me laugh, and cry too. Because it didn’t make the crap go away. But Grayson taught me that we can still have fun all day, even with his imperfect eyes and delayed motor skills.

My friend, who understands all too well the road I am just beginning, sent me this the other day.

Welcome To Holland
by
Emily Perl Kingsley

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

So Grayson, Ryan and I are in Holland, and it’s ok. It’s actually supposed to snow in Holland today- I think we’ll take a break from Tummy Time and go play in it.

• Can I make it through this winter without a coat, since mine is covered in dog hair?
• How is there SO much dog hair in my house? Yes, I know we have 4 dogs. But still.
• Why do I constantly have loads and loads of laundry to do, yet nothing to wear?
• What is that smell in my refridgerator?
• Will I ever get a full night’s sleep again?
• Will Izzy ever stop pooping in our bathroom?
• Is all of Grayson’s beautiful hair going to fall out? He’s going bald in the back!
• Why are baby MRIs so damn expensive?!
• Can I request that G see a certain endocrinologist because she looks friendly in her profile picture?
• Why won’t they let me make an endocrinologist appointment today? Right now. Why don’t they care that we want answers like…yesterday.
• Will I ever not be instantly happy when Grayson smiles? I hope not.

We got the results of Grayson’s MRI this morning. Basically, they found something abnormal-he has a thin corpus collosum (you can google it) and is being referred to an endocrinologist because this could indicate a hormonal/gland issue. He also has Optic Nerve Hypoplasia, which can manifest itself anywhere from simply poor vision to mental retardation. And they have no way of knowing how Grayson will be affected. Niiicce.

But, as scary as the unknown is, I’m actually doing ok. I know God made Grayson exactly how he’s supposed to be and he will grow and develop just right for him. And I don’t know if I want to know right how all this is going to turn out. I have this precious little baby and I don’t want to limit him in any way because of some diagnosis.

This afternoon, we had our first therapy session with Ms. Jeanie from ECI. She was great- and put my little boy to work! No more laying around napping all day for him- we are doing Tummy Time Bootcamp. Right now, Grayson tolerates tummy time, for about 5 or 10 minutes. Then he screams like I am torturing him until I pick him up. Well, he’s just going to have to scream a little more. Ms. Jeanie wants him on his tummy all day long unless he is sleeping. She even wants me to carry him around in my arms on his tummy. She also wants me to keep him awake more during the day. And she claims this will help with his sleeping at night- fingers crossed she’s right- every 3-4 hours for 4 months now is killing me!

So, big day for us, and lots of information and homework assignments to process! We are both tuckered out!


He’s going to have to build up his tummy-time endurance!