Sunday, August 28, 2011

"Enjoy your baby."

"Make sure you're enjoying your baby." That's what Paloma's therapist always tell me. I just laugh....even if i tried i couldn't begin to tell them how much we enjoy our baby. I mean look at that face. Could you help but only just enjoy her:)

Paloma is doing really really well, but that is just because Paloma is doing really really well. I know that her ND schedule must look overwhelming to her OT, PT and ST, but really it's not. Especially this week when mommy and baby were both sick and we spent so much time just...well enjoying our baby.

See even the daddy with hat head enjoys the baby:)

And as far as therapy goes, let me tell you Miss Paloma has it all under control.

So needless to say sometimes just nursing and dancing and loven on the lovens is all that gets done in this house. Just ask my laundry, or better, my dear friend who came over to help me with said laundry.

and i have decided that that's just fine.

And how about you, Paloma's elusive buddies, will you be waiting at the end of the crawling track tomorrow......

..still playing hard to get.

Tuesday, August 23, 2011

Lyme Disease, Rabies and Brain Tumors

........Remember when i mentioned "Banished to Holland" reasoning?  Well this is it. This is a new term i have coined for the feeling that since Down Syndrome happened, anything can happen...right?

And there is nothing better than going into full on hysterics on the floor of your computer room to your husband, because your dog barked at a dieing raccoon. A dog that you then touched, that probably gave you rabies, and since you are breastfeeding, now has also given your baby rabies. This is a true story, and it was a real fear....just ask my sister.

Or maybe the sinus infection that caused you to smell funny smells, and when you googled "funny smells"  brain tumor was listed among causes like, STRESS, weight loss, oh yeah and SINUS INFECTION.. Fast forward to hysterics on the floor of your closet crying to your sister that you don't want to die. This is also a true story, and it was a real fear.....just ask my husband.

And the Lyme Disease...... just ask my mom about the tick i found on my leg at eleven weeks pregnant that comes back to haunt me every time a joint hurts, or i smell "funny smells." Did i mention that Lyme disease was also on that list of possible causes, right next to sinus infection, and brain tumor?

My logical side can look at these things and know that it is really crazy. I am laughing even now as i write it down. Lets face it, it's crazy....go ahead, laugh:)

But you know what else was crazy? Me on the couch late at night talking to my sister, worried about Down Syndrome, and her laughing and promising me Paloma did not have Down Syndrome or anything else i was worried about......

and then me two days after Paloma was born on the floor in hysterics, because Paloma does have Down Syndrome. And i worried about it endlessly, and what seemed like the worst case scenario happened. So now i think i'm almost hard wired to believe that all of my worst case scenarios will also happen.

(and just a quick note, that worst case scenario is sleeping next to me cuddled up with my heart wrapped around her little curved pinkie.)

So where i'm getting at is, how do i get back to just being April again? Because i used to write songs, I used to laugh and smile and i used to be able to have a sinus infection, and just have a sinus infection.

I don't really know the answer, but i do know that i can't do it alone. So i reached out. I put it out there and i told a complete stranger about me having rabies. And you know what? She didn't laugh. She understood.

And i'm not saying this "Banished to Holland" reasoning will ever truly go away. It may never go away. Paloma may always be my reminder that some times things do happen, things that are out of our control, things that were not in our plan...happen. I don't know...i just don't know.

But i want to get better, I so want to get better, because someone said there are Tulips here too.

Goedenavond beetje tulp:)

Sunday, August 21, 2011

The Difference a Dr. Makes

Being that we are only four months into this journey with Paloma I guess i have been lucky to have encountered the wonderful and compassionate Doctors that we have. We did not have to go through the trouble of weeding through pediatricians until we found one that would support our decisions for Paloma. We already had that pediatrician. We weeded for Ava.

I have become spoiled by a Doctor that says Trisomy 21 with out a thought, and a nursing staff that puts up with half a dozen emails a week on new supplements or just mommy worries. This is what i thought was the norm. I thought that the medical professionals got it. I thought that this group of people knew the value of my daughter, that they were aware that she was not a Down's child, but that she was my child. This how ever is not the case. And two weeks ago, i was put in my place by an ENT that simply could not be bothered by a Down's baby...........his term.....needless to say i left in tears, well i didn't leave in tears, because the nursing staff had to calm me down.  Once i regained a level of composure, I held by baby tight in my arms and i ran like hell.

On the drive home i believe i called my husband. And i cried. Because i was hurt and angry and felt as if i had been thrown back to square one. This Doctor sat only inches away from me while i held Paloma, and never asked her name, never touched her, and never once considered that his terminology was tearing me apart inside. He blew off my concerns of reflux and sleep apnea and laughed at me wanting to be proactive on ear fluid. He reluctantly agreed to see her every six months...and then as if to almost put salt on the wound, he said, "and mom, thanks for taking such good care of these girls.".........

Needless to say i went home and found a new ENT.

But i was still hurting.

I hurt for days. and i fell into what feels like a sand pit of sorts. You know when you walk in circles around your house all day, dishes don't get done, beds don't get made and then before you know it, husbands are home and you still look like you did when you crawled out of bed at 10:30. I couldn't form sentences or articulate my thoughts, and i just down right felt like i didn't want to do this any more. And by this, i mean just the day to day of being........I think maybe banished would be a good term for it, banished to Holland.

But, the days still went by and before i knew it it was time for the appointment with the new ENT. I contemplated canceling and tried to convince my sister to do it for me...long story, we sound the same on the phone....looking back though i guess the receptionist has no idea what my voice sounds like or cares if i cancel...see, THAT'S banished to Holland reasoning...more on that later.

Well guess what? I went to that appointment. Right from the start Paloma was crying. She was tired and hungry and wanted out of her carrier. I was especially nervous and felt like i had been thrown back in the trenches. It must have been obvious because a tall blond nurse came by and scooped her up and took her back to her office where a handful of other nurses went gaga over my baby girl. The nurse held her and got her to sleep until it was time to see the Doctor.

The Doctor.....

Let me tell you this Doctor was wonderful. He thanked me for bringing Paloma, he told me of the great things my girl would do. And what a clever mama i was to be on top of the issue of her ears. He told me that t21 is an area of interest for him and that if i didn't mind he would like to take extra care of Paloma and see her every two months. He told me over and over how pretty she was and how proud he was that she was exclusively breast fed. He looked at Ava and he told her she had a good mama, and this time, it was sincer.

I left there feeling like i had found the golden goose....and Holland didn't feel like such a place of least not that day, or for the rest of the week.

So, see what a difference a Doctor makes?

Monday, August 15, 2011

My favorite things

When i was first dealing with Paloma's Diagnosis i think, well i know, that the hardest thing for me to accept and deal with was the look of Down Syndrome. I remember asking my mom how i was going to go out in public with her, how was i going to be able to handle it? Of course the irony of all of that was the fact that Paloma was the prettiest baby i had ever seen. She had these beautiful almond eyes like her daddy, a little bowe mouth like her daddy and a full head of gorgeous black hair, just like the Paloma of my dreams. Did i mention her nose? Well it's perfect....small and adorable and coming from Hugo and i where there is no shortage of noses, this always makes me laugh.

I honestly had never seen a baby with Down Syndrome, but i can tell you they are beautiful. And the way she felt ...Oh it's nothing less than bliss. It was almost as if Paloma knew how i was struggling and every time i held her, she would just melt into me. Love me, Love me.....

Now some of the things i love most about her are directly related to her extra chromosome. Sometimes at night when we are nursing i run my finger across the crease in her hand. The crease that is only on her right palm. I favor that palm, i adore that crease.

And those sweet toes that i can not keep out of my mouth.....The extra space between the big toe and the next perfect for chewing on.

And then there is that tongue.

That tongue......while we spend everyday strengthening her mouth and jaw, so that later in life things will close perfectly, she knows that tongue makes mommy laugh. For Paloma her tongue is just another device that she can use to explore her world. She licks blankets, bath water, crawling track and big sissy at every opportunity.

There we go..

I am suspecting Harley has been teaching her these habits.

And public? No problem. I quickly found that miss Paloma is a people magnet. People will stop me to tell me how beautiful my baby is. Be it at the grocery store or the mall. People are drawn to Paloma. And i love to show her off. I love it. I am proud of my girl. She is one of my favorite things:)

And what about this girl? Am i the only one seeing a cross pattern starting to form?

Hello little tongue:)

Saturday, August 13, 2011

In Four Months Time

How do you sum up four months of life altering moments? How can i put into words where i have been and where i am at today? Or tonight? Maybe with this face?

Or maybe with this love?

Because this love is a big big love. The love i dreamed of. These two girls, these sisters, my babies, they know what they've got. And see that big girl on the left? She is my hero. That girl, that little angel showed me what unconditional love is. And every morning when she asks me before her eyes are even open if she can cuddle with Paloma my heart melts.


Let the games begin:)