Executive Decisions

It's time for another installment of... Hubby Teasing Time.

(in case you need to catch up, read here and here)

For all you dad's out there, executive decisions are ALWAYS best left to the mom.

My husband made 2 of them lately, without consulting me first.

The first one came the day we were at the mall, pushing her around in the wheelchair. We were strolling along, me pushing our little guy and him pushing Paige when he blurts out, "Hey Paige, do you want to get your ears pierced?"

Did I hear him right? Did he just ask our fashion princess, wanna be teenager, master accessorizer, 8 year old with severe sensory issues, if she wanted her ears pierced? Without asking me first? I must have heard wrong. That's a pretty big executive decision for a dad to make!

Nope, I had heard correctly and as I am picking my jaw off of the floor, Paige answers, "Really? All right!"

Daddy turns to me with this, "Oh shit. I didn't think she would say yes" look on his face.





The second executive decision came a few weeks after that first one. His mother and her husband were over eating dinner with us. Paige had been especially off the wall that day and we both We were just about finished eating when Daddy says, "So Paige, do you want to sleep over at Grandma's tonight?"


Did he actually make yet another executive decision without asking me first?

Once again that "oh shit" look came over him when she said "yes"?

Sleeping over at Grandma's. No big deal right? But what you don't know is that Paige has never slept away from home and has never even been put to bed without both of us there. And, let us not forget her sound sensitivity... IT WAS THE NIGHT OF THE 4TH OF JULY. And, on top of all of that, we were expecting a severe thunderstorm.

All in all it worked out. Paige stayed up, out of fear from all of the noise, until past 2am. She liked staying at Grandma's and Daddy and I did ok too. (ok, so I cried a little).

Let's just hope that Daddy learned his lesson on making those executive decisions! I wonder what will come out of his mouth next.

Are you wondering about her ears? ....

Sound Sensitivity and Indoor Water Parks

This is what Paige looks like at indoor water parks... her hands never come off of her ears.

Out of all of the sensory issues that Paige's battles on a daily basis, sound is the worst, by far.

She was 3 when we visited a hotel/indoor water park for the first time. It was a very small one, which only had a few slides. We figured she would have a blast since she loves water so much, but we never took into account the noise level. Needless to say, day one of the first indoor water park visit ended in a major meltdown. We continued our stay and tried the water park in short bursts the next day. Even though she hated the sound, her love of playing in water overrode her sensory issues.

We've been going to hotel/indoor water parks almost every year since that first visit. She really loves it but we still can't stay in there the whole day. This past visit we tried to get her to lower her hands in hopes that she would get used to the noise. No such luck.

I take that back... only once did I get her to lower her hands.... just long enough to snap the picture.

Hands on ears aside... we love seeing her so happy!

At least she no longer melts down at the end of a day at the water park. Here she is with her brother, right after swimming all day.

How Much Do You Tell?

This was part of my last post but I felt it needed one of its own...

One aspect of having a preemie that I have given a lot of thought to over the years, is not knowing how much history to give to certain people.

Giving a complete history to a new doc/specialist is a no brainer.

But, what about school forms?

The classroom teacher?

The piano teacher?

Parent of her friend?

Neighbors?

Strangers who inquire about her size/behavior/distinct look?

I know my feelings on this subject are colored by the past. But I am still left wondering... "Who needs to know what?" Will she be judged differently if they know she is a former preemie? Will she be judged unfairly (behavior wise) if I don't tell them she is a former preemie. If they know she is a preemie, when she acts differently, will they be more understanding? Will that "understanding" take the form of allowing her to get away with negative behavior? If they know her history, will they not challenge her as much as the next child?

Thoughts anyone?

Don't Tell Her That!

Hubby and I have never hidden Paige's birth history from her. During doc visits, she was always present when they were taking her history. She was always present during consults following tests and procedures.

Over the years we have caught criticism for our decision to include her in HER care. We have been told to "treat her like a full term child and she will grow to be normal."

Paige started to notice her "differences" when she was very young, around age 3. She would try to do things that the other kids were doing and get upset with herself. It was quite sad. We explained to her that not everyone is good at all things in life. That never went over well. We tried to point out the ways that she excelled. That didn't go over well with her either.

Then one day I took her to the mall to run around with her friends, while us moms gabbed on the sidelines. I saw her trying to run and keep up with them, to no avail. She tried to get her friends to sit down and play in one spot with her. They wanted to run. She tried again to keep up with them but finally started to whimper. By the time she reached me, she was crying. She asked, "Mommy, how come my legs don't work like the other kids?" It broke my heart to see her struggle. It was time. Although her CP is barely noticeable in most situations, SHE knew it was there. A nice Brady Bunch speech was no longer going to work for her. I pulled her aside and told her that the muscles in her legs were affected by the CP and they work a little slower. She was happy with that answer. She was still upset that she couldn't keep up, but she now knew why.

I was comfortable with my parenting and quite happy to see her being content, instead of trying to push herself to do something that wasn't going to work, no matter how much she tried.

Then I hear, "Don't tell her that!" from someone in our group. "She doesn't need to know that she has CP." Umm... she already knows that something doesn't feel right... why not have a name for it? After all, it is HER body.

During a medical appointment, a nurse once told me that I shouldn't have let Paige hear me say that she has epilepsy. What?

We have been told that Paige shouldn't hear her birth history because it is in the past. My response, "when her long term issues relating to prematurity go away, I'll stop giving her birth history to docs."

Over the years we have had others wince when they hear Paige talking about her own issues. Because it's painful for adults to hear, they assume that she should not know the truth. Well, she lives the truth every day.

She is now almost 9 years old. She has never given up trying to do something that her body is resisting. She still runs with her peers, tries to do gymnastics with them, and at times is a bigger daredevil than others her age. But the difference is that now she understands why her body is resisting. She no longer feels inferior but instead understands how her body works.

As far as her birth history... Paige now does a beautiful job advocating for herself when dealing with doctors. She can state her history and her current health conditions in such a clear concise manner that it allows doctors to give her the best care possible and fosters independence. After all, one day she will be on her own and need to take care of herself.

I have had many conversations with older preemies who have full knowledge of their birth history and also their medical/mental health history growing up. Now adults, they are able to better understand their struggles and are wonderful advocates for themselves. I have also had conversations with adult preemies who knew nothing about their birth history (beyond that they were born early). They struggled as adults to find the answers to why they were feeling different than their peers. And, during my "break" I have been reading the various comments between Medrecgal and others. It was these exchanges that gave me the idea for this post. Thank you for your openness and honesty Medrecgal!!

I'm Taking a Break

Prayer/Religion/Spirituality

I've started this post and set it aside many times.

My wish is that we all can have an honest discussion about how having a child born premature (or the loss of a preemie) has changed our views on prayer/religion and spirituality.

My fear is that the discussion is going to turn nasty and unproductive.

I'm willing to give it a try.

My thoughts...

I was raised Catholic, even going to Catholic school for bit. I began to question organized religion very early on. I can recall a conversation that I initiated when I was 10 and was told that I was too intelligent and, "you just have to have faith." If someone had actually sat me down and had an educated discussion, I may not have strayed.

As I got older (teens) I started to feel guilty for the feelings I was having. Oh that Catholic guilt! Again I approached people who should have been able to help and again was told to have faith.

In my early 20's I did some honest soul searching. Now on my own, I no longer was forced to attend church. I started reading about other religions but nothing seemed to fit. I really felt lost. It's hard to explain but others who have been there will understand.

Then my water broke at 23 weeks. I was 30. I immediately reverted back to prayer and a whole lotta begging to God. People were calling me in the hospital and telling me that they were praying too. Prayers chains were linking all over the country, all for my child.

Some told me, "if you pray hard enough, everything will be ok."

When Paige was born I immediately felt that I must not have prayed enough. And, I surely must not be worthy. What a horrible feeling to have as I was laying on the operating table!

The next day, while my precious baby (whom I still had not seen) was fighting for her life in the NICU, one of our dogs died. He was my first baby. I had been separated from him for almost 3 weeks due to being on hospital bed rest after my water broke. My MIL called the nurses station and the nurse pulled hubby out of my room to tell him. He was crying when he came back in. I thought for sure we had lost our child. When he told me that it was our dog, I swore, out loud-at the top of my lungs, at God. That guilt was too much to bear. What a cruel chain of events.

During her NICU stay, people prayed over her. When she would pass a hurdle, they would claim that God was at hand and had spared her. What was the excuse when she would have a setback? Where was God then?

Why is it that God gets the credit for good things but is spared the credit for the bad?

Over the years I have struggled with my feelings regarding "God". It has not been easy to feel this way. I've tried searching for something that will bring me back, but just keep on coming back to the same place....

Was the theory of "God" just created by humans? Why would a person who has the ability to stop pain, actually allow our children to suffer?

I do hope we can all have a civil discussion. So many are passionate about their beliefs that sometimes that passion came come across as rude.

Before you type a comment, do so from this perspective... The comment you leave could help someone who needs help/direction. If you are nasty, you will only drive people away. Instead of simply quoting the bible, please talk about YOUR own personal feelings.

Lastly, if this discussion gets out of control, I will shut it down. Many parents are very vulnerable right now, struggling with all facets of prematurity. They surely do not need to feel attacked for how they are feeling or what they may have gone through.

The Preemie Project

I received an email (below) from a reporter, Andrea Ball, asking for help from preemie parents. She is also the parent of a preemie.

If anyone would like to participate, all of the details are below.

Stacy


Dear Preemie Parent:

Hi. My name is Andrea Ball and I am a reporter with the AustinAmerican-Statesman in Austin, Texas.

I am writing a large story about the mental health effects of premature birth on families. This story is funded in large part by the Rosalynn CarterMental Health Journalism Fellowship Program.

The main story follows a family with three premature children. We look attheir childrens' hospital stay, their challenges at home, the effects on theparents' marriage and the financial problems caused by medical costs. Weexplore the issues of depression, anxiety and post traumatic stressdisorder. We are also looking at the long-term effects on prematurity on thechild.

As part of this, the newspaper would like an online presence of parents whohave been through all this.
If you are interested, please answer the following questions and email them to rquigley@statesman.com and aball@statesman.com>
Please make sure you put the words PREEMIE PROJECT in the subject line so we are sure to see it. Here's what we need:

Your name
Your child's name
Your city and state and country
Hospital photos and current photos of your child.
If you have videos of your child on YouTube, please send us a link.

Then, please answer these questions (there is no word limit):

What were the circumstances of your premature birth and at what gestation did the baby arrive?

What was your NICU experience?

What has been your experience since your child came home?

Please discuss any mental health effects you or your child have experienced as a result of prematurity (depression, anxiety, post traumatic stress disorder, marital stress, OCD, bipolar disorder)

Please discuss resources you used to get your family through the stressful/emotional part of this time. (counselors, spiritual leaders, etc)

Thank you so much for your help. Your kindness is greatly appreciated.

Andrea Ball

P.S. If you would like to learn more about my work, you can see me here:
http://www.cartercenter.org/health/mental_health/archive/author/ball.html