Advocating

It's been a loooong time since I've written here. I originally used this blog as a place to write about my struggles with pregnancy loss. Then when I found out the baby boy I was carrying had Down syndrome, I assumed the blog would transform into a place to record the struggles that would come with that diagnosis. The fact that I haven't written on this blog for so long is a testament to just how seamlessly Will's addition to our family has been.

This is mostly due to Will's sheer awesomeness. He has had such a healthy first 18 months. His development is slow at times but always steady. He is an easy, happy baby. 

But the easy transition is also due to the supports we have. One such support has been Delaware County's version of the Help Me Grow program. I found out over the weekend that the program as we've known it was at serious risk. This brought my first real need to advocate for Will and stand up for what I know is right for his continued growth and development. 

I had a phone call with the director of the program to express my dissatisfaction with proposed changes. In the end, she conceded that even if they voted to make the proposed changes, I could keep the services as Will's been receiving them. I almost felt satisfied. At least it wouldn't affect my son. But then I thought about the families that would come after us who wouldn't be given that choice. In the end, I decided I should still work to convince the board to vote against these changes. Not just for Will, but for all young children in Delaware County.

Here is that letter:

Dear DCBDD Member,

We are writing to urge you to vote against the Primary Service Model as the method of delivering early intervention in Help Me Grow. When our family moved to Delaware County and then soon found out our, then, unborn son has Down syndrome, we were told time and time again how wonderful Delaware County’s Help Me Grow services were because they allowed parents to choose their providers and have a real voice in the services their children receive.

Once our son Will was born, we quickly requested referral into the program we had heard so many great things about. Will sees three highly qualified professionals who are trained in their area of expertise. We have chosen each of these therapists through referrals from other satisfied parents. We are deeply concerned that it is up for consideration to take away our choice as Will’s parents about who will provide his services.

We are even further upset by the idea that his services will be changed from direct therapy to consultative.  Each type of therapy requires a specific set of skills and training, so why does Delaware County believe they can have one person deliver the services for all three types of therapy? You know the common saying, “A Jack of all trades is a master of none?” We want the very best for our son, and that means he should be seeing each type of specialist, not someone bringing us secondhand information from another specialist.

Finally, as taxpayers who recently voted to continue DCBDD funding, we are greatly concerned that this change is proposed. No matter what jargon is publicized, we believe that this an attempt to cut costs and that it does not have our child’s (or anyone else receiving Help Me Grow services) best interest at heart. Why else would you consider taking something great and making it mediocre?

Vote no on the proposed change to Primary Service Model and maintain excellence in Delaware County!

In the end the board passed the proposed changes with a 4 to 3 vote. I can only hope that Will's services will in fact continue as they've been. And as disheartened as I am about this decision, I know that I did what I could.

Deflated

On September 15th, I had a growth ultrasound to check on Will due to the high possibility he had down syndrome. He looked good on the screen as I got what turned out to be the last look at him before his birth less than a month later. That made a whopping 16 ultrasounds in a 36 week pregnancy!

Later that week I saw Dr. L.
     "I know you don't want me to say it, but I just don't think the baby has down syndrome," she said, walking into the room. She was right, I didn't want her to say that. I had told her two months earlier, the last time she's suggested this, that we had already accepted the diagnosis and it would be best if I just continued the pregnancy expecting Will to have Down syndrome. She based her suspicion on the fact that nothing abnormal was found on the echocardiogram and that the only soft marker, an echogenic focus on Will's heart, had already resolved.

With her renewed suspicion, I asked about the measurements of Will's femur and humorous bones. I knew from reading that these long bones are often shorter when a person has Ds. Dr. L admitted that was a good question and looked it up.

"Oh. I guess I change my mind," she stated as she realized Will's femur measured in the second percentile. And just like that, the hope that I hadn't known I had let in for those few minutes was gone. My balloon deflated.

My mom thinks it was completely irresponsible of Dr. L to share this opinion. If I had not been so accepting that Will had Down syndrome, I might have latched onto my doctor's doubt and not let go. I, however, think Dr. L just wanted so badly for the test to be wrong. I believe she hoped that after all we'd been through, this was just a false alarm.

Anatomy Scan

On March 14th I wrote this:

For a week I prayed that this ultrasound would be reassuring. Specifically, I prayed that I would see the embryo had implanted in the right spot and that there would be a heart beat. At 5 weeks and 6 days, it would be right on the brink for this ultimate sign of life.

In case I would get what I prayed for but nothing else, I continued my prayer, hoping to cover all my bases. "Please let the baby continue growing until I deliver him or her, healthy in November." But I didn't stop there. "And let us raise him or her so he/she can grow until old age."

Then at the end of April we found out that Will would have Down syndrome. But I prayed for a healthy baby, I thought. Surly my prayers had not been answered. So my fledgling attempts at prayer ended a little more than a month after they began. In the seven weeks since then, there has been a sense of suspense while waiting for the results of the anatomy scan.

On Tuesday, Troy, the girls, and I went for the ultrasound. I had apprehension about bringing the girls. What if we received bad news with them there? But Dr. L had brought up the idea of them coming and I figured if she thought it was ok then we would do it. She also assured me that if she had to give us any negative results, she would do so in a way they wouldn't understand.

During the ultrasound I was on pins and needles. It was such a different experience knowing there was a very real possibility we would find something awry. With other anatomy scans, my primary focus was on finding out if the baby was a boy or girl. The possibility of finding something else really didn't register. This time felt different. I tried to read into the things the tech said or didn't say. I watched the images of Will on the screen but mostly I was focused on the appointment to come after where we would learn any results.

When it was over we got a few pictures to add to our growing collection. Then we went on to the real appointment. Dr. L shared that the only finding of note was a bright spot on Will's heart called an echogenic focus. She explained that it has no impact on function but that it is a soft marker for Down syndrome. She said, "Here's what I would say if we hadn't done the earlier testing: This finding can be an indication of Down syndrome and we can do further testing. But usually all turns out normal." Then she and I commented on how statistics and odds really mean nothing when we're talking about me.

Later that night I got a message from her that after reviewing all the images from the ultrasound, "other than the bright spot on the heart, the baby looks healthy."

I can't help but think back to my prayers for a healthy baby. We are certainly not completely in the clear yet. The next big hurdle is a fetal echocardiogram (a detailed ultrasound of the heart) in mid July. But the preliminary findings are there are no major structural issues. He appears healthy.

Final Loss Milestone

It's been eight long weeks since loss milestone four, and I am finally passing my final loss milestone.

It was at my regularly scheduled 16 week appointment last October that I learned the devastating news that my daughter no longer had a heart beat.

The final days leading up to my appointment today were mentally trying. I found myself reliving the image of my lifeless baby on the ultrasound. I heard sound bytes of my doctor telling me the news. I was terrified of receiving this news again and frightened of the resulting medical procedures and psychological anguish.

But, Dr. L came in and immediately went to the ultrasound to show me a baby with a beating heart. Will seemed to be sleeping, but Dr. L knows I worry if I don't see him moving around. We watched for a while and saw him touching his face, crossing his legs, and rolling over.

With this appointment, I ran out of prescheduled appointments. I had been previously unwilling to plan anything past this milestone, but now that it's behind me, we went ahead and scheduled a 17 week appointment and the 18 week anatomy scan.

This anatomy scan will be my next point of anxiety since it is likely to reveal any defects accompanying Will's Down syndrome. Dr. L reminds me that the weekly scans haven't given her any red flags but the 18 week scan will be with a much more powerful machine.

So now I wait again, but hopefully the most difficult wait is behind me.

Grieving What Isn't

There is a beautiful analogy that I found and read the first night we found out about Will's extra chromosome. It's about planning a trip to Italy and unexpectedly ending up in Holland. The message is that even though everyone else you know is still planning trips to and happily returning from Italy, you discover everything that is beautiful, albeit different, about Holland. Since I read it that night, several people have shared it with me as well.

So, I've read and been told that it's perfectly normal to grieve the child you thought you were having when you get a diagnosis such as Down syndrome, and although most of the time I have handled this news with (surprising?) ease, that was not the case the second morning. That morning, I woke up and immediately felt overcome by anger and sadness. Why were we being dealt another blow in our attempt for a baby? Why can't we just breeze through a typical pregnancy for once? (To be fair, Ella's was a typical pregnancy, but come on, only one out of eight?!) Why me? Why us? Why Will? Why do we keep hitting the incredibly low odds? I felt sad about what won't be and sad about challenges that we might face.

I cried hard that morning. First I cried with Troy before I could even get out of bed. Then I went to school and just walking by my assistant principal who said hi set me off again. I rushed into her office and opened up the waterworks. After a good cry there, I got myself together and went toward my room. I still made another stop to cry with a co-worker before my day with students began. That one pity-fest that began at 4:30 am and ended at 8:30 am has been the only time that I have found myself really grieving.

I'm not going to Italy, and that takes some getting used to, but Holland will be nice too.

Not as Expected

Dr. L held a box of tissues in her lap while she told us the test results. But I didn't need them since I didn't cry. Since then, she has mentioned at each of my appointments that my reaction was not what she expected.

Our ease with accepting this news is a bit surprising. If you would have told me a month ago that we would not be devastated if we found out our child had Down syndrome, I probably would have been surprised myself. I also probably wouldn't have believed you.

But here we are and as it turns out, we're ok with this news. If my doctor decides to bring this up again, I might try to explain myself a bit. I'm not sure if this is the true reason, but I FEEL like our reproductive past has a lot to do with my reaction. I've heard a lot worse news from my doctor than this. Will is still a living baby who holds a great deal of potential. Was I surprised? Sort of. Am I scared? A little. Am I devastated? No.

The Good

When we lost Olivia, my grief counselor suggested making a list of things I'm grateful for. It seemed so counterintuitive. How could I be grateful in a time like that? But, as it turned out, there were many things to be grateful about.

With Will's diagnosis, I found myself naturally returning to this state of mind. In fact, in the doctor's office that first afternoon, I found the first thing to be thankful for: a year and a half ago, we moved into a school district that is acclaimed for its special education services. This was one of the things I mentioned to my doctor within the first 20 minutes.

Within days, I had another thing to be thankful for: all the support of people around us. We are surrounded by people who expressed their excitement about our boy. We are surrounded by people who aren't scared away by his extra chromosome. We are surrounded by people who said beautiful things about our baby that I still go back and read if I need pick-me-up.

I'm also thankful for a strong support network that we found early. The first night, Troy suggested that maybe we needed to return to our support group. I thought that while a support group sounded like a great idea, we would need a whole new kind of group. In my research I came across DSACO,  the local Down syndrome association. They have a support group for parents with a prenatal diagnosis up to 3 year olds that happened to have its monthly meeting just a week after we found out. You better believe we were there! We met parents who have been where we are and where we will be. We got to see their little ones. We got signed up with the organization and have already received a mailing from them with resources for our pregnancy.

As that meeting, I learned another thing to be thankful for: our move to Dublin not only took us to the right school district, but also the right county. When we said our location, the response went something like this. "Oh, you live in Delaware County and it's Dublin Schools?" Apparently We inadvertently moved to the "perfect" place in the eyes of some parents.

In addition to the local support group, I have found an online group that is active and positive. Yes, the parents share their worries and challenges, but the overwhelming refrain from experienced parents is, "I wish I knew when I got the diagnosis that I shouldn't be scared. Our family is happy. Our child brings us joy."

There have been and I'm confident there will continue to be things to be thankful for as we continue this journey. Most of all, we are on our way to having our third child who we've been attempting to have since 2011 and through 3 previous losses. And it's icing on the cake that he happens to be our first son!

So Much More

Our family spent some of the first days after learning our baby's diagnosis talking about how we will use purposefully person-first language when we talk about him.

This is natural for me because I have used this same language for years when talking about my uncle. I never say he is schizophrenic. Instead it's that he has schizophrenia. This seemingly small distinction is important! My uncle comes before his condition because he is so much more than that: one of the most generous people I know, a huge sports fan, a Beatles fanatic, a wonderful uncle.

Lily immediately took this language seriously. She has already become a strict enforcer and will point out any transgressions. This means she is mostly correcting Ella who tends to say our baby IS special needs. What we're working on is saying he HAS special needs instead. Similarly, he is not a Downs baby; he is a baby with Down syndrome. Because just like his Great Uncle Tom, our baby will be much more than his condition.

And although we don't know much about him yet, the girls and I realized while sitting in the car in the dance parking lot that he is already more than his diagnosis. He is a boy, my son, and their brother. He is a grandson, nephew, cousin, and great grandson. He is William Oliver. He is Will.

Telling the Girls

We have put off sharing any news with the girls. They were crushed last time and really how could we put them through the risk of another loss? Over the weekend we started to think about when we should spill the beans. I am, after all, starting to look a little round after several previous pregnancies. We figured we'd wait for the next appointment to confirm we were still chugging along and we'd wait long enough to get the Harmony results so we could share whether they could expect a brother or sister.

So when we received the news about our baby boy having Down syndrome, there was a lot of uncertainty about what our future will look like. But one thing that Troy and I held onto was we were ready to share our news with Lily and Ella.

Now the amazing thing is, our daughters have sort of been groomed for their upcoming roles. Both girls attended the special needs preschool at the local elementary school as peer models. While I'm not even sure of what needs their classmates have had, I am sure my girls have played with, learned with, and befriended a variety of kiddos. And this year, particularly, Lily has become friends with a girl in her class who has Down syndrome.

So we started by telling the girls there is a baby in my belly. Troy continued to share that the baby will have special needs. This is a term Ella has been using a bit in the last few weeks, so we thought it might resonate a little with her. He added to Lily that the baby has Down syndrome and she understood that is the same thing her friend has. We finished by letting both girls know that they will be great big sisters.

We didn't tell them whether the baby is a boy or girl. We're saving that for a celebration! At least for now, votes seem to be that they want a brother.

The Tears Came

After the initial hours of strength (and let's be honest, shock), the tears came. But they came and continue to come from a very specific trigger:

In the middle of that first night, the floodgates initially opened when I seeked out a blog post I first read five years ago when a mother wrote about learning her daughter has DS.  She expressed the initial raw emotions and also the love and wonder she felt.
Her Post

It occurred when I happened upon a video of children explaining all the things they CAN do with Down syndrome.
View the video at the bottom of this page.

The crying, sobbing in a parking lot, happened when I watched a video of happy, active children who have Down syndrome participating in the Special Olympics. My brother sent me the clip of this event, which he happened to attend the day of our diagnosis.

And the crying came when I read my brother's blog post written the day after learning the test results. Perfection.
View the video and read his blog post here.

What these all have in common is they're all positive. They all give me hope about our future with OUR SON.

The Results Are In

Today we had our appointment. With less and less morning sickness in the last week, I had struggled mentally for the last several days. So, I was very glad to go in for some reassurance.

I was nervous, but the nurse decided to take my blood pressure at the beginning any way. Surprisingly, it wasn't too bad...for me. The doctor said she would get straight to the doppler then we could talk. I told her I didn't have any questions because all I needed was reassurance for another week. She tried the doppler first and thought she found the heart beat but said my heart rate was too high again to be sure. I was surprised to hear this because I actually thought my heart rate felt normal. She wheeled in the machine and I got another look at the baby. Today showed a very active mover and shaker, which felt like a relief since last week there was hardly any movement.

Afterward, Dr. L shared that the harmony genetic test results were in. The next part, was life-changing.

The results were abnormal. My first reaction was to demand to know why she had just bothered to show me the baby. She explained that the baby has trisomy 21, Down syndrome, and that it's not fatal. She wanted me to see that everything was still ok. I expressed that this outcome seemed crazy after everything else we've endured. Her reaction was something to the effect of, "I know. What the fu*k."

I asked the few questions I could come up with off the top of my head.  I asked to know whether the baby is a girl our boy. I asked for literature to feed what I'm sure will be an insatiable quest for knowledge.

What I didn't do was cry. I still have a living baby. Certainly, our previous experiences have given us a healthy dose of perspective to know that things could be much worse.

And on some level, I wasn't surprised. For the first time with any pregnancy I was nervous for the results of the test. Also, I read last week on Harmony's site that the results take 7 days. Monday night at dinner (the 7 day mark) I said to Troy, "What if she got the results but didn't call because something is wrong?" Rather than saying that was silly, Troy seemed to agree that that was a possibility. As it turns out, Dr. L received the results in the same hour as this conversation. She decided to wait until our appointment the next day so she could share the news in person.

I said last week that soon we would know more about who was growing inside of me. And now we know there is a little boy and there's a 99+% chance that he has Down syndrome.