"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Wednesday, February 24, 2010

We Knew Nothing

Three years ago, we knew nothing.



We knew nothing of NICUs.

We knew nothing of ventilators, intubations, and extubations.

We knew nothing of dysmorphic facial features.

We knew nothing of Ativan and Fentanyl.

We knew nothing of corpus callosums and kidney problems.

We knew nothing of suctioning and saline bullets.

We knew nothing of congestive heart failure and Lasix.

We knew nothing of possible seizures, spinal menengitis, and lumbar punctures.

We knew nothing of PDA's and coarctation of the aorta.

We knew nothing of The Children's Hospital in Denver.

We knew nothing of doctor's rounds and nurse's compassion.

We knew nothing of Pierre Robin, tracheomalacia, and oral aversion.

We knew nothing of tracheostomies and g-tubes.

We knew nothing of DMEs and home equipment and supplies.



We did know about IUGR and a two vessel umbilical cord.

We did know about ventriculomegaly.

We did know about frank breech presentation and a scheduled c-section.


Compared to what we didn't know, the list of what we did know is very short. We were innocent. We were naive. We were ignorant.

But, more important than anything on either of these lists, was one more thing we did not know.

We knew nothing of the strongest love known to humans: the love between parents and their children. We knew nothing of how far we would and could go to make our baby better, how nothing else matters in the whole world when your child is sick. How "sleeping" in nothing more than a closet with a mattress was comparable to a five star hotel if it meant that we got to be across the hall from our sick little girl. We knew nothing of the love that would allow us to move Heaven and Earth to save our precious baby's life so that she could come home with us and live a "normal" life someday.

Three years ago, we knew nothing. And today, even though we know more than we ever wanted to about raising a special needs child, we are grateful for the education.



I made and posted this video a year ago in honor of Marissa's second birthday. A year later, just before she turns three, it is still poignant and sums up how I am feeling today.
Enjoy.


Monday, February 22, 2010

Celebrating the Bro-Dog's 30th Birthday!

We had a blast hanging out with family this last weekend. My brother, Brian, and his girlfriend, Julia came out here from Grand Junction for the weekend. We celebrated Brian's 30th Birthday with a trip to Red Robin, laying around, and watching the Olympics. My sister, Michelle, and her boyfriend, Nate also came and spent the weekend with us. Marissa was overjoyed to have her Aunties and Uncles to play with all weekend. When Brian and Julia left, Marissa even gave her Uncle a hug and a kiss, which is huge for her!

Get ready for lots of pictures and a couple of videos documenting some of the fun we had over the weekend!

He is the smartest person I know!


Rissa eating with the big kids.

Michelle and Nate

Brian and Julia














"Here's a balloon! Here's a balloon! Here's a balloon!"
video

Sweet snuggle time with Auntie Chelle and Uncle Nate
video

Friday, February 19, 2010

Flashback Friday!




Friday, February 12, 2010

20 Years

Two decades ago, the first sentence in this little family's story was written.


Twenty years ago tomorrow, February 13, 1990, Jeremy asked me to be his girlfriend. We were only 14 years old and Freshmen in high school. So young, with so much ahead of us that we could not see, could not comprehend. What would have happened if God came down right then and told us what we would be doing in twenty years, the kind of life we would be living?

Let's just say I'm glad we couldn't see into the future; it would have been too much for our 14 year old selves to deal with. But here we are, twenty years later. And I can honestly say that God could not have chosen a better partner for me to weather this storm with. Things have not been easy by any means. We have gone through so much stuff in the last 3 years that has really taken a toll on our relationship. We are forever changed as a couple.

Gone are the carefree days when all we had to worry about was the crappy jobs we had, the crappy apartment we were living in, the crappy state of our bank accounts, and the crappy cars we drove. We have bigger and better things to concern ourselves with now. And, even though it is much more stressful than anything we have ever dealt with before, I am so glad we are where we are today. We have Marissa. We have each other. We are a family.

I can't wait to see what the next twenty years brings.

Jeremy, thank you for all you have given me over the years. I love you.

"The closer I'm bound in love to you, the closer I am to free."
Indigo Girls ~ Power of Two

Tuesday, February 9, 2010

Torn


I have really being feeling torn lately.

It is no secret that we trach parents try to keep our kids quarantined for the Winter months, those months we have officially nicknamed "the respiratory season". It is no secret that, if our kids get exposed to germs, they tend to get sick faster and go down harder than most. A simple cold could develop into pneumonia and land them in the hospital.

It is also no secret that exposing typical kids to typical germs helps them build their immune systems. If they get a bug, their bodies learn how to deal with it and fight it in the future.

This is where I'm torn.

We have been incredibly blessed by Marissa's good health. Up until two months ago, she hadn't had even the slightest sickness, not even a sniffle, since February '09. We know this is partly due to her own immune system. She has just never been a very sick kid, although when she does get sick, she gets hit hard, since she is prone to pneumonia. But, it is also largely due to the fact that we try to keep her pretty isolated during times when the sickies are out in full force. If you remember, I was incredibly sad that we could not take Marissa trick-or-treating with friends for Halloween because she hadn't gotten her H1N1 shots yet. And, when we took her to a meeting at a school for her IEP at the beginning of December, she came down with a cold the next day. Luckily, and thanks to zinc and her other vitamins, she never got more than the sniffles with that one.

It is clear that her immune system is not as strong as it could be, simply because we do not expose her to germs and allow her body to build resistance to them. Are we doing the right thing? Are we doing Marissa a disservice by not only not letting her body build resistance to germs but also stunting her social growth? These are the million dollar questions.

We have several friends whose kids are in Marissa's age group and have birthdays in the Winter months. In fact, most of them do, as does Marissa. We have never had more than a family birthday party for her. We were just invited to two different kid's parties on the same day. We really considered going to the parties because we felt Marissa would have a blast and benefit from the social interaction. We knew we would be taking a big risk. As it turns out, we had to decline both invitations because my brother is planning on coming into town that weekend, but the stress and conflicted feelings were on the surface for several days.

We have learned that Marissa is such a social person when given the opportunity to be around other people. She loves to play with other kids, although we need to help her work on her lack of understanding about personal space. : ) Just this last Sunday, we took her to a Super Bowl party my good friends were having. There were lots of kids there and Marissa jumped right into the fun with both feet. There was one little guy with a cough and a runny nose that made Jeremy and I give each other the sideways glance that said "Oh great, what have we done? Now she'll be sick for sure!" She has yet to show us if she will be affected by this interaction but we are crossing fingers and saying prayers that she will stay well.

This same gathering of friends showed us how Marissa needs to be exposed to social situations more often. After about three hours of being in the middle of a very noisy and lively bunch, she shut down. She had been playing with a friend of ours who was lifting her in the air and she was having a blast. All of a sudden, after about the eighth time he lifted her in the air, she got a really panicked look on her face and started crying really hard. Granted, the room had just filled with several people and was very loud and full of activity all at once but it made us realize she still has issues with knowing how to deal with social situations. She just flipped out. She would not calm down and we had to scramble out of there. She got overstimulated in an instant.

Another side of this issue is when she finally gets her trach out (hopefully by the end of this Summer) we will be enrolling her in school as well as letting her play with friends more often. The problem arises when we consider that, because she has not been exposed to the typical germs kids her age have and then, all of a sudden, we are thrusting her into every social situation imaginable, she will likely get sick quite often for those first few months. This prospect makes every former trach parent shake in their boots. If she gets sick enough, her airway might close down or she may need to be intubated, which could very likely lead to her needing to be re-trached.

So what do we do? How do we decide which is more important, Marissa's physical health or her social skills and growth? And how do we know if we are doing the right thing by isolating her or if we are actually doing her more harm by not letting her build natural immunities?

Just once, I just wish there was one clear best answer.

Just once, I would like to know what it is like to not feel torn.

Wednesday, February 3, 2010

Needing a Break


From doctors, that is.


Honestly, I feel a little silly saying that because Marissa only had five appointments in January, not including her speech therapy. To me, and I'm sure to many of you, that is kind of a low number. I think back to Marissa's first year and a half and remember that I took her to at least two doctor appointments a week, a majority of the time. Then, we had a record month in November '08 when we did not have one single doctor appointment. That was followed by a year where doctor appointments were the exception, not the rule. Marissa got comfortable knowing I was not going to be taking her to get poked and prodded all the time. October and April always seem to be pretty busy (every six month check ups) but she always tolerated it OK.

Then last month happened. Marissa has gotten to the point where she has convinced herself that every time the car stops, we are going into a doctor's office. With last week's g-tube appointment, she started crying, coughing, gagging, and puking as soon as I opened the van door to get her out. This was part of the reason that Mama Bear came out in full force and was not going to leave that appointment without her g-tube getting changed out. Marissa had been crying non-stop for a half hour before the nurse came in and told us the supplies had not come. I was not going to put her through all that for nothing, only to repeat the whole traumatizing scenario the next week. I put my foot down.

Just this last Saturday, Jeremy and I decided to go shopping for a new bed (yay tax refunds!). I pulled into the parking lot, put the van in park and Marissa started crying and puking. UGH!

I pray that the time never comes that she starts crying every time I put her in the car but the pattern is leading that way. Marissa's anxiety has progressively gotten worse. It started with her crying as soon as the doctor came in the exam room. It moved on to her crying as soon as we got into the exam room. Then she would start crying as soon as we settled into the waiting room. Then, as soon as I started checking us in. Now it is when I park the van. I just wish I knew what to do to ease her extreme anxiety and fear.

Of course, we have another appointment today. This one is the nutritionist to see what we need to do to pack a few pounds on Marissa in preparation for her possible surgery. She has been holding steady at about 28 pounds for several months and Dr. P said she would be a better candidate for the surgery if she was a little bigger. I am hoping, after today, our doctor appointments will ease up. The next one I have scheduled is March 1 to see Dr. P. I hope and pray we can have three doctor free weeks.

Marissa deserves a break.