Archive | April, 2013

Back in the hospital

30 Apr

Rosalie has had C diff for over a month & after two rounds of flagyl there has been no change. Dr. G thinks something else is going on. Plus her heart rate is up & the nurse just said she heard a murmur, but it could be from the fast heart rate, not sure. And she’s losing weight & not eating. So Dr. G put her in the hospital to run some tests & try to figure out what’s going on.

Thanks for the prayers!

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Hope Haven, an update, & Rosalie’s BFF

27 Apr

I am writing this blog in the car on the way home from Jacksonville. Don’t worry, Will is driving. We just had our first visit to the Down syndrome center at Hope Haven in Jax.

When Rosalie was born, Will brought Mary Beth up to the hospital to have lunch & visit me. MB was running around my room, looking at all the pretty flowers & eating goodies that friends brought, when the door opened and in walked a nice man, well dressed & friendly. It caught us off guard, but once he introduced himself, we were so happy to see him.

You see, after Rosalie was born, we had so many people reach out to us, and so many friends giving us names & numbers of their friends who had children with Down syndrome. One name that kept coming up was “Libby Anderson,” or “Dr. Anderson’s wife.” It took a few days before it dawned on me who they were talking about. Libby! Will & I went to high school with Libby & she was a long lost sorority sister….who is not on Facebook, by the way, so that explains (sadly) why she was “long lost.”

Once I realized who “Libby Anderson” was, I could not wait to get back in touch with her.

The gentleman that came to see us that day in the hospital was Libby’s husband. That one simple visit from Eric did a world of good for us. He told us about their precious daughter who was 9 months old at the time. He let us know that all the many emotions we were feeling were normal and soon life would be back to normal – a new normal, but a happy normal. And he told us about this wonderful place called Hope Haven.

Hope Haven has a Down Syndrome Center that was started by Laura Watts. Laura’s son, Jonathan, was born with Down syndrome. Families come from all over the WORLD to visit the DS Center at Hope Haven. I called to get an appointment for Rosalie once she came home from the hospital. To get an appointment with all of the evaluations, we would have had to wait over a year. Luckily, we got in on a cancellation for today (Wednesday). Everyone there was so friendly and helpful and they all loved Rosalie. It was a jam packed day. We met with Laura, who provides a cognitive/educational evaluation & answers any questions about DS. Then Rosalie was evaluated by a speech therapist, a physical therapist, and an occupational therapist. They gave us exercises to do with Rosalie and also ideas on how to work the therapies into our everyday lives.

A physical therapist at Hope Haven demonstrating the football hold stretch to help with Rosalie's torticollis.

A physical therapist at Hope Haven demonstrating the football hold stretch to help with Rosalie’s torticollis.

They also suggested that she get started with physical & speech therapy as soon as possible. Babies Can’t Wait (Georgia’s early intervention program) is supposed to come on Monday to re-evaluate Rosalie. If they cancel again, I am taking matters into my own hands. I mean…seriously….it’s called Babies CAN’T Wait.

In other Rosalie news…right now we are dealing with her C. diff infection. We spent the first two months of her life trying to get her to poop, and the last month trying to get her to stop. She is on her second round of flagyl and we just pray that it works. I can’t really tell yet.

A little background: After the negative rectal biopsy in February and learning that Rosalie did not have Hirschsprung’s Disease, we were relieved, but we were still left trying to figure out what was wrong. She still could not poop without us making her or without plenty of Miralax. So we went back to Nemours in Jacksonville to see a pediatric GI. He was great, but he really didn’t tell us anything we didn’t already know….she has dilation in her colon. So he put her on Nutramigen, upped her Zantac, and sent us home. He called us back a few weeks later and said he had been consulting with some other doctors and surgeons and they reccommended Botox injections…in. her. anus.

Ummmm….no.

A. I am not injecting Botox anywhere in my infant, and definitely not in her anus. B. The results would only last a couple of months if it worked at all, and we aren’t paying that kind of money for a temporary fix.

So now we are hoping to get in soon with a pediatric GI in Savannah for a second opinion. We still don’t have an appointment. Guess who is getting harassed everyday by me next week…

Back to what I was first talking about, Libby & Eric. I plan on doing an entire post on our new Down syndrome “family.” But since I have already mentioned Libby and Eric, I wanted to share this picture of Rosalie & her BFF, Reagan. We are so blessed to have friends like Libby, Eric, & Reagan to travel this journey with!

Libby, Reagan, Rosalie, & Christina celebrating Woeld Down Syndrome Day with the DSA of South Georgia
Libby, Reagan, Rosalie, & Christina celebrating World Down Syndrome Day with the DSA of South Georgia

………………………….Have questions or need support? Email me at sweetrosalieblog@gmail.com or follow me on Twitter, @sweetrosalieblg

Relief

20 Apr

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A few days after the first level 2 ultrasound, we met with the specialist in Atlanta (via telemedicine) for the results.

In the days leading up to this day, I was not worried at all. I honestly thought it was stupid & unnecessary to have the level 2 ultrasound. After all, the tech said she saw the echogenic focus all the time & I have plenty of friends whose babies had it & were not born with Down syndrome. Plus, the blood test showed that the chance of the baby having trisomy 21 was low. I was not worried.

But then, sitting in the office that day, I really started to panic. What if our baby does have Down syndrome? What if she has something wrong with her heart? I was trying to stay calm, but all the “what ifs” started running through my head & I was freaking out inside.

Then we were finally called back after what felt like an eternity of waiting. We sat down and then the specialist came on the screen. She was very nice, went over the findings of the ultrasound, and finally….”Your baby does not have Down syndrome. She is fine.”

Whew!!! What a relief! I could breathe again. I said a prayer thanking God for taking care of our baby.

Now I look back on that day and I am pretty disappointed in myself. You see, I was scared because society & the media lead us to believe that Down syndrome is bad, scary, an unwanted diagnosis. I was so ignorant. And ignorance breeds fear.

One example of how the media perpetuates negative stereotypes:

On January 28, 2013, just two weeks after Rosalie was born, The Today Show ran a segment about a couple who is having their first baby and decided to use the new MaterniT21 test to find out if the baby has Patau syndrome (Trisomy 13), Edwards syndrome (Trisomy 18) or Down syndrome (Trisomy 21). The parents said they would keep the baby even if the baby did have Down syndrome, but they wanted to do testing so they could be prepared.

About halfway through the segment, Matt Lauer says to the couple, “Let’s get right to the “good news.” And then they go on to announce & celebrate the fact that their baby does not have Down syndrome. And I remember feeling the same relief as these parents, which makes me sad.

“We are safe. The baby does not have Down syndrome.”

We are safe. Our baby won’t be like Rosalie.

Seeing this unfold on live television is like a punch in the gut to the 400,000 families of individuals with Down syndrome living in the US. A punch. in. the. gut.

This may be hard for some to understand, and while I do not want any child to suffer from heart or any health problems, I now celebrate to hear of anyone who has a child with Down syndrome. No, not because misery loves company, but because they will experience a love and joy like none other. And I’ve only been on this ride for 3 months & I can say that.

A couple of weeks ago, I was sitting in the waiting room at my pediatrician’s office (our second home). I was holding Rosalie when a lady & her daughter came in & sat across from me. I thought the daughter had Down syndrome but I was not positive, she looked to be in her early 20s.

The mom kept looking at me & smiling & she finally asked what my baby’s name was, commented on how pretty she is, and then she asked, “Does she have Down syndrome?”

I was so proud & excited & told her yes, she does. She started smiling so big & the tears started pouring from her eyes, which made me cry. It was the best moment. She went on to tell me how HAPPY & THRILLED she was for me. It makes me cry just thinking about it. Those were the nicest words anyone could possibly say to a mother. She started telling me about her daughter and how wonderful she is and what a blessing she has been in their lives. She had Down syndrome, she was in her 20s, & had graduated from Valdosta High.

“You are going to be just fine.”

I’ve heard that a lot lately, but it was nice to hear it from someone who really knows. 🙂

Down syndrome is nothing to fear. A diagnosis of Down syndrome is not bad.

Do you know what causes Down syndrome?

According to the Mayo Clinic:

There are no known behavioral or environmental factors that cause Down syndrome…it isn’t inherited. It’s caused by a mistake in cell division during the development of the egg, sperm or embryo.

This is just the way God knitted her in my womb. And she is absolutely perfect!

………………………….

Have questions or need support? Email me at sweetrosalieblog@gmail.com or follow me on Twitter, @sweetrosalieblg

Happy Birthday, Mary Beth!

10 Apr

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Happy 2nd Birthday, Mary Beth! Today you are 2 years old! They have been the two happiest years of Daddy’s & my life together. You are smart, pretty, strong willed, and you have a big personality with a magical imagination. We love you THIS MUCH! And even more than that!

You were 14 months old when we learned you would be a big sister. We would watch you play and always imagined how much fun you would have if you had a little brother or sister to play with. That dream was finally coming true in June of last year. We tried to explain as well as we could that Mommy was having a baby and that you would be a BIG SISTER. As the months went by, you understood more and more. You would run to me, lift my shirt, press your cheek to my belly, and say, “Wose-a-wee!” It just melts my heart thinking about it.

As Rosalie’s birth grew closer, the normal feelings of guilt and fear started to creep into my head. I remember one night very close to when Rosalie was born, I just cried and cried because I worried that you will feel abandoned or loved less once your sister was born. But I would usually remind myself that everything would be okay, we would all do our best to help you not feel that way and you are too young to remember what is going on anyway.

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We were so excited for you to meet Rosalie for the first time. Since Rosalie was in the NICU, the conditions were not ideal. You only got to see her through the glass. When you first saw her, Daddy was holding her in the NICU and mommy was outside with you. You were happy for a minute but then when you realized you couldn’t get through the glass to get to your daddy, you were not a happy camper. Once we were able to bring Rosalie home and you were able to see that we were now a family of four, you were much happier.

So many thoughts have crossed my mind since Rosalie was born and we were told she has Down syndrome. Would Rosalie be the little sister we always imagined for you? Would you & Rosalie still do all the fun things that sisters do together? I would always picture you & Rosalie playing together in the playroom. Then a feeling of panic would come over me when I thought, “but Rosalie has Down syndrome.” And let me be completely honest here. I DO still feel that pain. Let’s be real, it has only been 12 weeks so this is something that I still worry about and maybe always will, I don’t know. But now, even though I may still feel that way, I know in my head I shouldn’t. Because you know what? You and Rosalie are still going to play together in the playroom! You will still fight and argue. You will still be able to share a room if you want. You will still be able to play dolls together. You will still be able to run through sprinklers in the backyard. You will still watch movies together. You will still share clothes. You will even still be able to go on dates together. You will.

My prayer is that you will be her best friend and her protector. Love her and see her for who she really is. And Rosalie IS NOT Down syndrome. She is your sister. Include her. I pray that as you grow, I will be able to answer your questions about Rosalie and Down syndrome in the best way possible. I pray that you will not look at your sister any differently when you learn about Down syndrome. And I pray that you will have patience with her. She may take a little longer to do things, so give her the time and space that she needs. Do all of these things and I promise that you will share a stronger love and bond with your sister than you ever imagined.

I just found this blog written by a woman whose brother has Down syndrome and it made me so happy. I hope one day you will be able to write something wonderful about having a sister who also happens to have Down syndrome.

Dealing with the diagnosis

8 Apr

20130804-142122.jpgThe picture above was taken in the NICU the night that Rosalie was born. I finally was able to get out of bed and into a wheelchair to take a stroll down to the NICU. She was so tiny and absolutely precious. She was a big girl for a 33 weeker – 6 lbs 9 oz. Everyone comments, “you must have been off on your dates.” I definitely was not off on my dates. This was a very well planned pregnancy, so I know exactly when everything happened. Gestational diabetes is one suspicion, but I passed the glucose test, so I dunno. I just have big babies! Mary Beth was 8 lbs 12 oz at 38 weeks.

Anyway…I stayed in the hospital from Monday to Friday. I just kept delaying the inevitable…leaving the hospital without my baby. When Friday finally arrived, I spent the morning and part of the afternoon in the NICU with Rosalie. Will left to get lunch and about an hour later he calls me to tell me he is sick. Perfect. Now who is gonna pick up my crazy emotional hormonal self and take me home? My dad. I remember the nurse laughing and saying, “well, nothing that has happened to you this week has been ideal…why would that change now?” She was definitely right. (Sorry, Daddy! I love you, it’s just that I imagined my husband being the one to weather this storm with me!)

He came to pick me up and once I was finally discharged, they threw me in the wheelchair and we started the long ride through the halls and lobby to the main entrance. That was awful. Here I am, being taken out with all of these beautiful pink flowers and balloons, and no baby in my arms. I got in the car and just started hyperventilating. I don’t think I have ever cried so hard. I remember my dad holding my hand and asking what was wrong.

“I DON’T WANT TO LEAVE MY BABY!!!! THIS IS THE HARDEST THING I HAVE EVER DONE.”

I sobbed and sobbed the whole 5 minute car ride home.

We pulled in the driveway and I pulled myself together, knowing I could not act like a maniac in front of Mary Beth. Opening the door and having her run to hug me was so wonderful. I just sat down on the floor and hugged her tight. But as soon as Mary Beth was in bed that night, I hopped in my car and drove myself to the NICU. Yes, I know, I was not supposed to drive so soon after surgery, but I didn’t care and I was honestly fine. I got a little scolding from the NICU nurses and after spending a little time with Rosalie, they made me go home and get some rest. I must have really looked bad because the next day they kept talking about how much better I looked! 🙂 I was completely exhausted.

I really miss the NICU nurses. They were awesome. I never had to worry about Rosalie because I knew she was in such good hands. They cared for her (and every other baby) like she was their own. They were so wonderful and helpful. Dr. Young, the neonatologist, was wonderful as well. SGMC is lucky to have him. (He is the one that had to have the depressing conversation with me on the operating table.)

With each day that passed in the NICU, Will and I wondered more and more, “does she really have DS?” We could not see any of the characteristics that we were told that she had. (We only said this out loud to each other & maybe two other people.) The chromosomal test would be the definitive answer and we did not expect the results for 2-3 weeks. Well…one evening during the second week of her NICU stay, I was rocking Rosalie when Dr. Young pulled up a chair next to me. He had some papers in his hand. I can barely type this because it just makes my whole body go numb. (Now I’m sitting here staring at the screen because I can’t bear to type it.) I don’t remember how the conversation went, but once I realized what he was about to tell me, I wish I had stopped him & made him wait for Will to get there. Will & I had been SO STRONG. So so strong. But this moment made me realize how much Will is my rock. Dr. Young showed me the papers and began talking to me about chromosomes and how we have two of each but Rosalie has three of her 21st, Trisomy 21, Down syndrome.

The tears just started flowing. I couldn’t be strong anymore. Now there was no question. Rosalie has Down syndrome. That was a tough night. Tough. Will finally got there & I tried to relay everything to him (Dr. Young had to go). I remember getting in my boat (what I call the Suburban) that night, calling my mom, and I was turning onto Patterson, sobbing, trying to tell her & I could hear it in her voice too, she was just as heartbroken but trying so hard to sound strong, so I kept the conversation short so we could both hang up and cry.

Now that I’ve had a couple months to process, it is not sad anymore. But at that point we were grieving. What would her future be like? Would she be able to make friends? Would our friends & family accept her? Would she graduate from high school? Go to college? Have a career? Have a boyfriend (not until she is 30, of course!)? Get married? Have children? And then my selfishness came out – Would she live with us forever? Would Will & I ever be able to go out on a date again? Or go out of town & leave the kids at home with Grandma or Mimi & Mac?

Yes, life would be different. Very different. But I am here today to tell you that life with Rosalie is…..I don’t even know how to describe it. Joyous! Happy! Fabulous! Now that we are almost 3 months into this journey, my eyes are open. We WILL have a “normal” life, it’s just a new normal.

I have SO much more to write about. But i can’t let every blog be as long as a novel! I hope you will continue to follow us on this journey because it is life changing!!!!

Welcome to Holland

5 Apr

In June 2012, we learned we were expecting a new member of our family. I got a negative result on a pregnancy test on a Saturday morning, but I knew it may be too early to take a test. I just had a feeling that I was pregnant. We spent that evening at our neighbor’s house & I left before dinner was ready because it was Mary Beth’s bedtime. After I got her tucked in, I searched the kitchen for something to eat. First I had a few vanilla wafers with chocolate cream cheese, healthy I know. Then I went on to eat almost a whole pot of boiled peanuts. I LOVE boiled peanuts, but this was a little much. I sat there & thought,”I can’t believe what I just ate. This is crazy. I KNOW I am pregnant! Who eats vanilla wafers with cream cheese & a gallon of boiled peanuts in one sitting? Only a pregnant woman!” So I got up & took another test. I was SO excited when it was positive!! I knew it!! I immediately called Will to come home. He couldn’t believe it, especially since I had a negative result that morning. But we were having a baby! 🙂

Because of a previous miscarriage, I had my HCG levels checked a few times and once we saw the numbers rising, I started weekly progesterone shots. This pregnancy was so different from my first. I was much more sick & completely exhausted which, with a 1 year old, was tough. But we wanted MB to have a sibling close in age & I knew it would not be easy.

We had our first appointment & ultrasound at 9 weeks, sometime in August. What a relief & a blessing to see & hear that baby’s little heart just beating away! At 15 weeks we had an early gender determination ultrasound. Fully expecting to see a little something between baby’s legs, we were surprised to learn MB would have a little sister, Rosalie!

A few weeks later, we had an ultrasound at my OB office. The ultrasound tech found a “bright spot” on Rosalie’s heart, called an echogenic intracardiac focus. It is a calcium deposit on the heart, a soft marker for Down syndrome. The ultrasound tech put me at ease by telling me she sees it all the time and it turns out to be nothing. Later, I would talk to several friends whose babies had the EIF but did not have Down syndrome. I was not worried. And even if she did have Down syndrome, it didn’t change our love for our child. And I even remember telling my mom the week before Rosalie was born, “After working for Special Olympics Georgia and becoming acquainted with families of athletes with DS, it is not something I am afraid of. God is not going to give us more than we can handle, so honestly, why wouldn’t he give us a child with Down syndrome because I know we could handle it.”

We had a level 2 ultrasound and later met with a specialist who told us Rosalie was fine and she did not suspect that she had Down syndrome. She also ordered an ultrasound at 28 weeks to check growth. I remember telling everyone that I was not worried, but I also remember the relief I felt when the words came out of her mouth, ” Your baby does not have Down syndrome.”

Fast forward a couple months to that 28 week ultrasound: As soon as the ultrasound tech put the thing on my huge belly, she immediately said, “Look at all that hair!! It goes all the way down her neck! And look at that fat roll on her neck!” I immediately thought to myself, “Isn’t a thick neck roll a sign of DS?” (Yes, I know…that is not exactly right. I was thinking about nuchal translucency, which is something totally different, but it still got me thinking about DS.) And then Rosalie sticks out her tongue. And I am talking a Gene Simmons tongue. It was definitely a protruding tongue, another sign of Down syndrome. But I never said anything. And neither did anyone else.

In those last few weeks, my contractions were out of control. I was in so much pain, just about all the time. I made two trips to L&D because the contractions were so strong & so close together with no signs of slowing. The first trip at 2 am on a Saturday morning got me two bags of fluid & two shots of terbutaline which stopped the contractions. The following Monday, they were back and very consistent so I went in again. At this point, my blood pressure and heart rate were too high to get terbutaline, so they gave me some Demerol, which did absolutely nothing, and an Ambien, and I went home and passed out.

And then there was another scan…the 32 week scan. Rosalie’s femur measured small which was a sign of dwarfism or Down syndrome. Ugh. There it is again. Seriously? I’ve already been told that my baby does not have Down syndrome. Do I really need ANOTHER level 2 ultrasound? I also got a progesterone shot to help with the contractions. The OB office called me later and scheduled the level 2 scan for that week & then we would meet with the specialist again that next Tuesday, Jan 15th. On Friday, Jan 11, I remember calling my midwife, Teresa. I was concerned because I was still having contractions. “Come in first thing Monday morning and we will get you on the monitor.” I trust her (& still do) so I stuck it out until Monday.

The next day, Saturday, Jan 12, I helped to host a baby shower for my best friend, Shirin. I was on “modified bed rest” and I was not going to miss my best friend’s baby shower. I had been waiting for the pleasure to host a BABY shower for her, I was absolutely thrilled that her life had brought her to that day – she had finally found the RIGHT man, then received a diagnosis of malignant melanoma, got married, and now she was having a precious baby boy – NO WAY was I missing her baby shower. The shower was held at her church’s fellowship hall. I stood at the counter, helping as much as I could, and a man with a precious little girl on his hip opened the door, looked at me & said, “Is this the Down syndrome support meeting?” Then other parents and children with Down syndrome came in. I remember standing with my friend Jessica who was talking to her friend, Erin, a mother of a child with Down syndrome. As I stood there with them, listening to Erin talk about moving their Down syndrome support meeting to a church classroom, I remember thinking to myself, “I am going to be joining them someday.” A mother’s intuition? It is a powerful thing.

Monday, January 14 – The events of this day are a little blurry

Finally, my mom arrives at my house around 8:15 am to keep Mary Beth while I go to see my midwife, Teresa. I even remember getting in my Suburban and driving down Eager listening to “Springsteen” by Eric Church, and thinking about my “glory days” kinda like the song describes & thinking about how far I’ve come, and how much my priorities have changed since having kids. I remember thinking I would not change a thing. And I still wouldn’t.

I remember sitting on the table in the OB’s office, hooked up to the monitor. The baby was not as reactive as they would like, so I was going to get an ultrasound. I went and sat down to wait for the ultrasound and I was so happy to see the face of a dear friend, Lael. Our husbands are very close friends and she and her husband had just moved back to Valdosta and were expecting their first baby. Then my name was called and I went into the ultrasound room. On the table, the tech started to get concerned as she was looking at Rosalie’s heart. And then I saw it too. There was a large black bubble by her heart & it looked like fluid. She went and got the other ultrasound tech and they thought we needed to do a live feed with the specialist in Atlanta. The second tech left and I started to get cleaned up. I remember fighting back tears and asking the tech, “Am I having a baby today?” Then I called Will’s work when I couldn’t get him on his cell and told him something is wrong & to come straight to the office.

Then I remember the tech taking me to Teresa’s office, but someone was in there, so I sat in another midwife’s office, furiously texting my family and friends, begging for prayers. I was all alone and doing everything in my power to hold it together. God put Lael in the office that day, I know he did. Will works 40 minutes away and I needed someone to lean on until he got there. Lael was the one who was in Teresa’s office & when she came out & walked past the office I was in, I grabbed her, and she stayed with me. Next I remember sitting in the other ultrasound tech’s room with Lael and we were waiting to hear back from the doctor in Atlanta. The tech said, “Your baby was the one with the tongue, right?”

“Yes!” I said. “And isn’t that a sign of Down syndrome? But no one said anything?”

Finally Will got there, Lael left, and Teresa took us into her office, shut the door and said she would be right back. I tried to catch Will up on everything that had transpired. Down syndrome. But that doctor told us the baby did not have Down syndrome, so why are we even talking about it?

The door opens and Teresa comes in.

“You are having a baby today. We think your baby does have Down syndrome. Dr. in Atlanta said that she has seen a lot of babies with DS die in the third trimester, she does not know why, but she believes the baby needs to come out today. Where do you want to have the baby? Do you want to have it here or do you want to go to Atlanta?”

“I want to be in Atlanta.”

But the weather was about to be bad in Atlanta and the doctor would not have any way to monitor me during the 3.5 hour ambulance ride. So the plan was to have Rosalie here and then she would be transported via life flight to Atlanta. The arrangements were made and I finally lost it. I could not take it anymore. I cried hard and loud and I did not care who in that office heard. I was terrified. I was only 33 weeks pregnant. The baby had fluid in her chest. She might have Down syndrome. How much more could I take? Teresa got up, kneeled beside me, held my hand tight, and she just prayed. She prayed for peace, she prayed for safety, she prayed and prayed and prayed. I did not want her to stop. And I know she still hasn’t. I love that woman so much.

We went straight to the hospital. Do not pass go, do not collect $200.

I was in shock. I remember checking in downstairs, my preacher praying with me in the waiting room, being wheeled up to L&D, laying in the bed getting prepped for surgery and my contractions were out of control at that point. Then my parents, Will’s mom, my brother and sister in law, and Caroline came in. And then I was wheeled into the operating room.

A doctor wearing a mask came in as I sat on the operating table. He apologized for the conversation we were about to have, but it was a conversation that was necessary, and he began to ask me what my wishes were in case they had to go to extreme measures to save her, how long did I want them to work on her to save her, did I trust his judgement when he decides there is nothing more he can do to save her. I was certainly not prepared for that.

Then I got the spinal block and they laid me down on the table. I literally thought I was about to die. I started throwing up and I could not breathe. All I could do was stare at the clock and think about Mary Beth and how much she needed her mommy. I could not die. And then the same doctor who delivered me as a baby, walks in the room, stands over my exposed body, and makes a comment about me needing a tan. Any other woman may have been offended, but his comic relief was exactly what I needed right then. I was going to be ok.

I remember hearing Rosalie’s gurgly cry for the first time. Thank you God, her lungs work. Thank you, thank you, thank you. Please let her be okay. Please God, please!

And then something happened that we were told NOT to expect. They asked Will to come over to the baby, and he was able to bring Rosalie to see me and we were able to take a picture. That was huge. We were told that she would be immediately rushed out and we would not see her until we got to Atlanta.

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I remember looking at her. She looked exactly like Mary Beth when she was born. She looked like a beautiful little rosebud. I remember searching for some sign of Down syndrome, but I did not see anything at all. I guess I just assumed that the doctor’s initial statement was correct and she did not have Down syndrome.

After surgery and recovery, I was finally wheeled to my room. I don’t remember much. All I remember is waiting for the neonatologist to come and tell us what was going on. He had told me it would be a few hours before he came to us with any news. Then finally, the door opened, and in walked the doctor with two of the NICU nurses.

The good news was that Rosalie was able to stay in Valdosta and did not have to be transported to Atlanta. The fluid in her chest that we all saw on the ultrasound that morning could no longer be found. Answered prayers.

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And then…”we have to wait for the chromosomal test results to know for sure, but your baby does have several signs of Trisomy 21, Down syndrome…” I just remember laying in that bed, with Will sitting in the chair next to me, and we just sat there, listening and nodding, even smiling at times. All I could hear was “Welcome to Holland,” an essay I was once given a copy of when I worked for Special Olympics Georgia, and that I had passed on to a dear friend whose son was born with DS two years before Rosalie.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

We have been in “Holland” for 11 weeks now, and yes, it IS very special and very lovely. 🙂