And let the stress begin...

After countless hours of sorting paperwork and getting rid of more than 40, (I really should have counted them), boxes I finally found the birth certificates I've been searching for weeks to find. I only have 2 or 3 boxes left to sort through that have come in from the garage. Granted, I'll have to re-sort some of the stuff I've set aside to scan or to keep, but it's mountains less than I had a few weeks ago. I can handle it.

I also still have all the paperwork that was already in the study before we started bringing boxes in from the garage to sort. Thankfully, there are only about 7 boxes or so. There is a chance that I will actually be able to get through the rest of the paperwork by the end of October. That would be huge. But, I have other things happening, so I won't be disappointed, if I don't finish it all up by then. I know I will be done with the paperwork and have the study completely cleared out by Thanksgiving. 

Again. Huge.

In the meantime, we will be putting the social security card found earlier and the birth certificates to use and start the process of getting guardianship of the girls. 

That's right.

Guardianship.

Apparently after a child with a developmental disability has finished with high school, their parents are no longer in charge of their medical, financial, or other such life-changing decisions. They're treated like any other adult. They have the right to refuse medical treatment. They have the right to spend their money as they see fit, so if they want to do nothing but buy cookies and nothing else, they have that right. 

So this summer when Hopper broke her leg, if she had not still been in school, we could not have signed for her to have surgery. If she had not consented to it, the doctors would refuse to treat until they had the court's okay to treat. The delay that getting a court order could take could mean the difference between life and death. And we get that. We will never allow either of the girls to go through something so horrible.

However, it still somehow feels wrong that a parent has to get guardianship to be able to make the same decisions for their disabled children that they've made since they brought them home from the hospital as babies. It's a bit of a slap in the face. It feels as though your parenthood is somehow being siphoned away, and you will now just be called, 'guardian'.

Thankfully, it's just a legal term. 

We will always be the girls' mommy and daddy.

And nobody can ever take that away, no matter how hard they might try.

So for the next couple of months while we go through getting permanent guardianship of our own children, the stress level is going to go up. It will involve attorneys and court visits and home visits and . . . 

Yeah.

So let the stress begin. 

We're ready. 

Er. 

Almost.

That which changed our Life Before. Part 4

At some point during the drama with Hopper's heart, vocal cords, ears and tongue, I went in for an amniocentesis to see, if Scooter was going to have the same chromosomal abnormality that her older sister had.

The amnio itself was uneventful. We made a day of it, because we had to travel 50 miles from home to get it. We tried to make it a fun, happy, light occasion, even though we knew what the potential issues were that may face us. A few weeks later the results came in, so Hubster took the day off from work once again, we loaded up the kids, and headed back down to Wilmington for the results.


The doctor didn't want to give us the results outright. He wanted to prepare us for what lie ahead, so he started out with generalized small talk, so it was obvious to both The Hubster and myself that our baby was indeed going to have the same genetic condition that Hopper had. So I did what I could to hang on and not give into the panic I felt rising in my gut.

I glanced over at the genetic report that was lying on the doctor's desk and without moving it saw what the sex of our baby was. We had waited to find out. We wanted to be surprised. But now I needed to know. I needed to have something to hang onto at this really scary moment. I needed to start making plans to keep my mind off the scary unknown that loomed in front of us. I needed to know who I was falling in love with, so there was absolutely no chance of that love being diluted by the information we'd just been given.


"We're having another girl!" I choked back tears and tried to keep my voice uplifting and light. I didn't want the girls to see I was upset. I could not give into what I was feeling at the moment. Oddly, the thought that I couldn't get out of my head, like a bad song that just won't go away, had nothing to do with the chromosomal issues and the problems that may arise. Nope. I couldn't stop thinking that I was failing somehow by not giving my husband a baby boy. Today, it seems like such an odd reaction, but it's what passed through my mind at the moment, however fleeting the thought was. 

I also remember feeling somewhat smug that I could read the genetic report, even though the doctor was irritated with me for having blurted out that we were going to have a baby girl. I could tell he didn't think I was taking the situation seriously, when in fact I was taking it all too seriously. I had experience with this genetic condition, and he had none. I knew our family would face many challenges with Scooter, but I needed a win. 

Any win.



And then I was snapped back to reality.


For nobody told Bugster not to give in to what she was feeling. 

Sobbing, she yelled, "But I wanted a baby brother!" 


I have thought many times of how grateful I was for her little breakdown. I had no doubt she would love her little sister. She'd get over the fact she felt cheated at that moment in her little life. It would become a distant memory. However, it gave me something to focus on other than the immense grief I was feeling. I knew I would love my baby no matter the circumstance. But I also knew life would not be easy for her. And I grieved for what she faced. I grieved for the loss I felt myself, as I tried to stay composed.


We got the name of a geneticist to talk to about Scooter's diagnosis before we left, and we took the girls out to eat before heading back home. I don't remember the name of the restaurant, what we ate, or what anyone one was wearing. I just remember feeling like I was in a fog for the rest of the day.


When we got home, I made the appointment with the geneticist. Even though we knew that Hopper was the only one in the world at that point with the particular chromosomal abnormality that affects our children, we were hoping to get some new information about what it meant. 

Instead, we met the geneticist from hell.


She was a tall, slender woman with dark hair, but I don't recall her name. I just remember how cold and cruel she was. 


We began by asking her, if there was anything new about the genetic condition Hopper had and Scooter would be affected by. She had no news for us at all. Not surprisingly, we knew more about it than she did. But what happened next blew our minds.


She asked us when we would be having the abortion. 


We sat there dumbfounded with our mouths hanging open that she felt she had the right to assume we would end the life of our little one. 


Uncomfortably, we stammered that we weren't intending to end the pregnancy. 


So she began to brow beat us and extol the virtues she saw of us having an abortion. She told us how our baby wouldn't have a life worth living. That she'd amount to nothing. She'd likely never be able to walk or talk. That she'd probably be a vegetable. That we didn't have a right to put her through that or put that burden on society.



We were speechless. We were in absolute shock that she was trying to strong arm us into having an abortion like a pushy used car salesman trying to push a piece of junk car on an unsuspecting kid.


I don't know which of us spoke first, but we assured her that abortion was not an option for us.


She glared at us and yelled, "If abortion wasn't an option, why did you waste the government's money to have an amniocentesis?!"


I yelled right back at her, "So we can have access to the right doctors when she's born, if she has a problem!"


Dazed, but united, we stood up and left. 


In an odd way, I'm thankful for the run-in we had with the geneticist that day. It brought us closer together as a family, as a husband and wife, and it solidified our determination to do everything we could to protect and nurture our babies. 


We didn't know it then, but we would need that reliance on one another many times in our lives together.

She's with me.

(Christmas 1994 Ages 1.5, 4, & 7)

This afternoon, I was on the phone when the PBS station went from Arthur, (our youngest's favorite show ever), to BBC World News. It's the driest type news ever, and it drives the girls nuts, so I switched it over to the CMT videos. I wasn't really paying attention to what was being played until a little girl in a special needs stroller appeared on the screen. She caught my eye, and I knew that I had to see what the song was. So I paused the station (I have to admit that I love our DVR and being able to pause live tv!), so I could watch the video when I got off the phone.

Collin Raye was singing about his granddaughter. I couldn't take my eyes off the screen. The words completely summed up 1,000 conversations my husband and I have had over the years about our girls. I understand that many people don't like Country music, but I highly recommend everyone take the time to listen to the song. I think it will greatly touch your heart.





She's With Me by Collin Raye

She’s with me
I proudly tell the maitre de as we arrive
He seems surprised
In a clumsy moment as he looks for room, for her blessed chair
A table stares, and their eyes show only pity
as they try to sympathize
Oh, how difficult that must be, look away
Day after day, they’ll never see, the joy you bring
Only happy at the times I know that she’s with me

I wear it like a badge of honor at the mall
I hear her call, the only way that she is able with a cry
Time to go bye bye, she can’t say why
Maybe tired, maybe hurting, god I wish that I could tell
Do I ever make her happy for awhile
To see her smile, makes my week,
Though she can’t speak,
She let’s me know she feels my love when she’s with me

I know just what heaven looks like when I see that perfect face
For no other mortal heart could be so fair
I myself so weak and weary, so imperfect as a man
How could I be the one you chose to care for our girl
Never done a single deed to earn the right to share her light
Though it’s such a painful road we walk each day
Lord you have your ways, this I pray
On the day I stand before you, she’ll stand right by my side
When you look upon me, head hung down in shame
I’ll feel the blame, she’ll look at me,
And then she’ll speak, in that precious voice
Don’t worry ‘bout him my lord, cuz you see,
He’s with me

Of hoarding and rare disorders.

Last night, I watched another Hoarders episode. This episode was about a single man who had adopted 2 special needs children. His son was born addicted to cocaine and had several behavior issues as a result. The man was understandably overwhelmed, and he couldn't seem to keep up. I could really identify with him and his situation.

Our daughters could be considered 'teenage toddlers'. They've got all the emotional upheaval that happens in the years associated with puberty, but they've got the coping mechanisms and understanding of toddlers to some degree. In some ways, they're a bit more advanced than toddlers, but neither is developmentally over 6 years old.

Over the years, it's been difficult, because we've been so isolated from others who share similar diagnoses. In fact, we are not aware of any other people who have the same chromosomal rearrangement they have. Our family, as well as families who have children with chromosomal rearrangements are pioneers in their own way.

Nineteen years ago when our middle daughter was born, we didn't have a computer. We had no access to support groups via the Internet. What we did have was a mother by the name of Julie Gordon who runs MUMS (Mothers United for Moral Support). Just knowing we weren't alone helped tremendously, even though we never found anyone else like our girls.

I'm thankful for the resources parents have today such as the National Organization for Rare Disorders (NORD), Unique, and CDO (Chromosome Disorder Outreach). I'll be exploring these resources as time permits. I'm hoping it will help with the isolation. It always helps to know you're not alone.

I came across this video on youtube today.



I already feel better.

I am not alone.