August 13, 2015
by marfmom
6 Comments

2 Years, 2 Months, 1 Week, 4 Days

That’s how long it took from when we were homestudy approved until we got The Call about our daughter. Yes! For those who don’t know, we have a beautiful little baby girl, Miss R! Her surprise arrival and some issues getting into my blog account from my new computer are responsible for a delay in blogging.

I’m excited to share our side of Miss R’s arrival story with you today, while asking you to keep in mind that I won’t be sharing everything out of respect for her birth family and her own privacy. Her Story and Our Story will always intersect (much as any of our biological children’s stories will) and it’s tricky to tease that all apart. I think it’s even more important in adoption to be careful to let the child have ownership of his or her own story, and I hope that I have more success than error with this as time goes on.

The Menininho, J, and I spent spring break in North Carolina, visiting my mother and sister. When we made it through security at the airport to come home, an email notification popped up on my phone. It was a message from a social worker at our agency, asking if we wanted to be considered for a potential situation. After a brief phone call with Mark, we decided that yes, we did, and of course I spent the plane ride home (when I wasn’t helping the boys) daydreaming that perhaps this would be our baby.

Spoiler alert: It wasn’t. A little less than 48 hours later (a weekday in April) I received another email, letting me know that there were other plans for the baby. I told myself it was just as well. I fed the kids dinner. I got M ready for t-ball practice. About 5:15 that evening I was about to load the boys into Mark’s car for t-ball and was packing up my van to head to a meeting when Mark ran back into the house to check something. A moment later though he ran back outside and handed me his phone as he called over his shoulder “it’s the adoption agency!”

The social worker on the line suggested I put the phone on speaker, but I told her no, Mark was busy. Well and honestly, I can’t figure out how to do anything on Mark’s phone, let alone put it on speakerphone. She asked me if I’d been told about a baby in _____ city. I felt irritated at this point. I told her yes, I’d already been told that that baby wasn’t going to be placed with us a few hours before, so why was she calling me?

“Oh. Um, well, I don’t know anything about that baby. I’m calling about a baby who was born yesterday.” the social worker said.

Whoops, my bad, jumping to conclusions!

She then told me about the little girl who would be Miss R.

“Well, what do you think?”

“What do you mean what do I think?” I asked a little sharply. “Are you saying her mom picked us? Are you asking to show our profile? What are you talking about?” I mean really I should have figured this all out from the moment the social worker suggested speakerphone but I think after all the “No’s” and the match that didn’t work out, my brain just couldn’t go there. I needed it spelled out for me and this social worker was taking her own sweet time!

“I’m telling you you have a daughter!”

Well at that point I just flipped out. I couldn’t form a coherent thought. It was something like “Mark! Mark! There’s a baby! A baby girl! A baby girl for us! We have a baby girl! Now! She’s here NOW!”

The social worker wanted us to wait till the next day to come to the hospital. I told her no, we’d been waiting too long and to give me an hour to pack and find somewhere to take our boys. Tell the hospital we are coming and if they won’t let me in well I’ll just be waiting outside the door first thing in the morning, but I am coming to my daughter NOW.

Mark brought the boys inside while I ran upstairs to throw dirty clothes in a suitcase (hadn’t done laundry from spring break yet) and call our parents. Eventually Mark and I realized we hadn’t actually told the boys what was going on. I went downstairs to find them just standing patiently in the living room.

“Hey guys, I have something to tell you.”

Menininho asked “Are you going to tell us that we have a baby sister?”

“Yes, yes it looks like you have a baby sister and Daddy and I are going to meet her tonight!”

The boys just started screaming and running in circles cheering and expressing gratitude.

My inlaws took the boys for the night, and Mark and I started the long drive. Let me tell you: the drive to go meet the baby that is hopefully yours, who you had no idea about 2.5 hours ago, is a very weird one. I’d never been so excited! It was amazing calling our siblings to tell them the news. It was also the LONGEST DRIVE IN THE HISTORY OF THE WORLD.

My face, the entire drive to the hospital.

We got to the hospital about 11 pm. Went through the ER as instructed, found the security desk, gave them our info, and waited to be taken to the NICU (the hospital didn’t have a nursery). Security had no record of any such baby. After a few moments of panic, Mark called our social worker who informed us we were at the wrong hospital. So, correction to what I said above: the 5 minute drive from the wrong hospital to the right hospital was the LONGEST DRIVE IN THE HISTORY OF THE WORLD.

The nurses were waiting for us (though they had thought we were coming from a much closer part of the state and were therefore confused why we didn’t arrive until 11:30 pm). When I saw Miss R, I just knew. I knew that she was who we had been waiting for.

I was knocked over by not only the love I had for her, but the love I had for her birth family.

Mark and I spent a couple of hours with R, then tried to sleep at a hotel till we could come back the next morning. Mark had to drive back home after we met with the social worker that morning in order to be with our boys. All in all, R and I had 8 days more before we could go home. One of my very best friends had recently taken a job at the same hospital where Miss R was born and was kind enough to let me crash on her couch during that time and take me to and from the hospital. (We had too much fun surfing online one night, which ended up in the purchase of Nathan Fillion earrings.)

I treasure the time that I had just Miss R and me, bonding together in the hospital. And seeing the looks on her brothers’ faces when they met her for the first time….there aren’t words.

R wasn’t too happy about being woken from a nap to meet everyone.

Now, 4 months later, the boys are still just as attentive and loving and excited to have a sister. We are all so, so in love.

First family photo

March 25, 2015
by marfmom
1 Comment

Everything You’ve Wanted to Know About Conference

If you’ve somehow missed it, registration for the 31st annual Marfan Foundation Family Conference is live!

I’ve come across a variety of questions online and I thought I’d take a stab at answering some of them for you, since I’ve been around the conference block a few times.

I’ve never been. Why should I go to conference? You’ll learn more in that weekend about your or your child’s diagnosis than you will in a year on your own. You/your child can be evaluated for free at a clinic staffed by the country’s experts. You’ll get to spend time with hundreds of other people who get it. It’s invaluable! When I first went as a teen, I got a lot out of seeing adults with Marfan living well. My interactions with those adults was as important to me as my interactions with the teens my age (most of whom I’m still in touch with 16 years later).

Will my “unaffected” child get anything out of it? Mine sure does! Many sibings come to conference. The teen program has a workshop just for them. The Menininho attended the kid program last year for the first time; J is too young still to go. M had a great time making “Marfan friends,” and getting to ask questions about Marfan syndrome that maybe he wouldn’t feel comfortable asking at home. Plus, a lot of the kid program isn’t necessarily connective tissue disorder specific. For example: Saturday they’re going to spend the whole day at Legoland and the planetarium.

What about my unaffected significant other? There are workshops for them too! My husband, Mark, co-runs a workshop for spouses/partners, and there is a couples’ workshop as well. Plus, this gives them a chance to learn all about Marfan syndrome. Mark loves coming to conference every year and has made friends of his own there.

What about those of us with related disorders? There is a Loeys-Dietz syndrome track and workshops for other related disorders as well.

Is registration per person or per family? Registration is per adult. Children 18 years and under are free with a registered adult: 1 adult can bring multiple children for free, but children/teens may not register for conference or come alone.

What’s up with scholarships? Scholarships are for first time attendees from the United States. Most are partial scholarships, covering 1 adult registration and 2 nights hotel. Scholarships never cover transportation. The deadline to apply for scholarships is April 13th, and decisions will be made around April 17th.

If I’ve applied for a scholarship, should I go ahead and register for conference, clinic, and a hotel? You may register for clinic, but do not register for conference or reserve a hotel room until you’ve heard back about the scholarship.

What if we receive a scholarship and end up not being able to attend? The scholarship goes back into the scholarship fund and you could re-apply for a scholarship another year.

Can I attend the kid program with my child? Who is taking care of the kids, anyway? Family members do not attend the kid (or teen) programs with their children. However, there are really fantastic chaperones! These include medical professionals, Foundation staff, and (background checked) volunteers. Some of the kid program coordinators have been running it for years and volunteers are either affected themselves, or have a loved one who is. The children’s program schedule is online too. The children’s program is for ages 5-12. Do contact Diane M. at the Marfan Foundation with any questions or concerns that you have!

My child has special needs (a wheelchair, food allergies, another diagnosis, etc.) Please let Diane M. at the Foundation know ahead of time. The earlier she knows, the better accommodations can be handled.

What do the teens do? A full schedule is available on the conference website, but we’ve got workshops (they address both medical and social issues), a field trip, a dance, and plenty of time to get to know each other planned. The teen program is for ages 13-18.

What about the young adults? The young adults program is for ages 19-25. They have their own workshop track and social activities, as well as the option of attending any of the adult programs that they would like to. You can find their schedule here.

Can my child attend a program outside of their age group? No. The programs have strict age-cutoffs, but be assured: the programs are designed to meet the needs of the variety of ages of participants.

What about evening activities? The teens and young adults have activities till late at night. For adults and kids, there are hospitality suites at the hotel to facilitate meeting new people. Evenings are also a great time to check out things local to Chicago: I suggest the pizza!

Which hotel should I stay at? It’s up to you! Both are close to the hospital where the adult workshops will be held. They’re also within walking distance from each other. The teen program activities will be split between the two hotels.

How does clinic work and when will we hear back about it? There are two days to the free clinic. The first day has echoes and eye exams. The second day has appointments with a variety of specialists: cardio, ortho, genetics, pulmonary…sometimes GI and other specialities (I do not know if GI or anyone else will be at clinic this year). You must register for the clinic by May 15th. You should consider sending pertinent medical records with your application so that the doctors can review them ahead of time. Priority is given to patients without access to knowledgeable medical care. You may not receive your clinic appointments until shortly before the conference, so assume that you have an 8 am appointment on the first day you’re attending clinic (whether that be Thursday or Friday) when planning travel arrangements.

What about Foundation members who only speak Spanish? We have a Spanish language track at the conference. I’ll update here once I know about Spanish language interpreters for the clinic.

Conference isn’t near me this year. Does it change location? Yes. Conference moves around the country every year. Where conference can be held depends in part on clinic availability.

What questions have I missed? Ask in the comments!

February 27, 2015
by marfmom
2 Comments

The New Orthopedist

After our fall appointment out of state, I decided it’s time for J to have a local orthopedist. There’s no reason to see Big Name Doctor until J is closer to needing surgery. We can do regular x-rays here and send them to our other hospital if necessary for a second opinion. I called our local Marfan clinic this week and magically got an appointment to see their orthopedist two days later (yesterday).

Now, the doctor himself is fine. I have no doubt he knows the spine inside and out, though some of what he said in terms of Marfan-specifics is a little different from what I’ve heard elsewhere. Still, really nice guy who was great with J, and I feel like we’ll get good guidance from him. Plus, it sounds like this hospital is doing or will be doing the Magec rods soon, and I think I’d want to go that route if he needs surgery at a young age (I believe they’re approved for ages 10 and under).

Specialist aside, the other people we met with today were a little more questionable. J’s nurse asked if he’s on losartan for aortic stenosis. Ummm….how about the opposite?! Clearly orthopedists aren’t cardiologists, but if you’re going to specialize in Marfan you ought to know the most basic part of it, right?

The “best” was this conversation that J had with the resident though.

Resident: So J! Are you going to be the next Michael Jordan or Lebron James? Going to be a basketball star?

J: No.

Resident: Why not?

J: My mommy won’t let me.

Way to self-advocate, son! Even at 4, he knows the rules. I was both proud of him, and ticked at the resident. His stupidity rubs in what J can’t do, and he’s already sensitive to that!

“That’s right, I won’t let you and more importantly your cardiologist won’t let you!” I said.

The resident asked if that’s because he has a PDA. No. Again…Marfan = aortic aneurysms.

Like I said: I don’t expect every doctor to know everything about Marfan. But if you’re working in a Marfan clinic, no matter the speciality, you ought to at least know that the most dangerous part of Marfan is aortic aneurysms/aortic dissection.

Luckily, the actual doctor knew enough to ask about his aorta and eyes. We went over J’s xrays and his scoliosis isn’t at the point of needing intervention yet, but we’ll go back this summer to continue to monitor.

I’m proud of J for handling appointments that are scary for him (like this one), and for starting to advocate for himself.