After a long few days of being off from work, I had to go in yet again today. I woke up before my alarm went off at 5:30 with the anticipation of Presley waking up any minute to eat (he finished eating last night at 10:30pm). I knew that when he woke up he would be starving so I wanted to get up, eat and get ready before he woke up and I had to stop to feed him. Fortunately I got to finish everything I needed to do, and even then he wasn't awake. It was time for me to leave so I picked him up out of the crib, put him in the car seat, put him in the car and headed to my mom's where Presley would spend the day. He slept the entire ride! He actually slept until around 8am when I was leaving there to head to work.
Today was a hard day for work. I cried the whole way. I don't know why I cried. I just couldn't stop. It's not like I haven't left him before and it's not like today was my first day back. As soon as I pulled in the parking lot of school I calmed myself down and walked inside. It wound up that a teacher in Module A (pre-k) was out sick and they needed help and asked if I would. Of course I said I would. I got to work with 2 of the 5 kids all day and had a blast. It's such a different world working with the Pre-K kids than it is working with the 16-18 year olds. Let me tell you, these little ones are SMART!!! They knew how to play me . They knew I wasn't familiar with their programming and tried to get away with whatever they could! At one point I was walking thru the atrium and fellow teacher asked me how it was going and I said that "he's been trying to pull the wool over my eyes"....would you believe he turned and looked at me and said "I don't know what you mean by that". I almost lost it. I had to explain to him that I knew he knew what he was supposed to be doing and that he wasn't. I told him I knew he wouldn't be acting this way if his regular teacher was there. So I just reminded him that it was important to be a big boy when he is in school and to do the work he is supposed to....hahaha BUSTED! Once the kids left, I felt like my head was spinning. I was mentally and physically exhausted. All I wanted to do was leave and go see my baby. I wanted to just hug him and kiss him and not let him go. I know it will get easier to go to work once the new year comes, but for tomorrow, I just hope I don't cry as hard.
Congratulations! It's a Boy
Thursday, December 22, 2011
Wednesday, December 14, 2011
I can't believe we are halfway thru December!
So I finally have an opportunity to sit and write tonight and I am upset with myself that I have not posted anything in the past 2 weeks! I feel like I failed an assignment! LOL The past few weeks have been so hectic! A lot has happened since then so I am going to try to catch everyone up with what is going on with us.....
The day following Presley's 2 month birthday our neighbor Chris took some pictures of our little man. He asked if he could take them because he wanted to practice taking photographs of a baby as he and his wife were expecting their first together in January. Of course I was more than happy to let him take the pictures. Presley was a good boy and even seemed to enjoy having his pictures taken....He is such a handsome boy! Here are just a few of my favorites.... ***Thanks Chris and Zack!! & Congrats to Chris and Megan on their beautiful baby boy who was born this morning!
On Sunday December 4, 2011 Presley was christened at St. Anthony's Church in Hawthorne by Msgr. Kupke....the same priest who married Don and I. It was important to us to have him christen Presley as he was such a big part of Don's young life (Don went to catholic school). There were 3 other babies there that day, and out of the 4 of them, Presley was the best behaved. When Msgr. Kupke anointed his chest with oil, Presley reached out and grabbed his finger and would not let go. It was such a special moment. I felt this was Presley's way of saying that he was ready to be welcomed into the church. Then of course it was time for the holy water to be poured over the heads, and you can see the nervousness sneak onto the faces of the parents of the other children. Of course as soon as the water ran over their little heads, they began to cry... Then it was Presley's turn....Msgr. Kupke called us up and began pouring the holy water over his head, and he didn't make a sound. He actually seemed to enjoy it! (which I knew he would since he LOVES his tubby).
Then came the most stressful part to me....the after-party! I can honestly say I will NEVER throw another party like that again. I think it was harder and more stressful than planning my wedding!!
The day after the christening Early Intervention finally came. They asked a ton of questions and attempted to "play" with Presley. Unfortunately he was in no mood to play. He was so tired and just wanted to sleep (which was my fault because I gave him a bath right before they arrived because he still smelt of the oils). He fussed and cried and was angry, which was completely atypical for him. Thankfully they didn't mind at all. The meeting lasted about 2 - 2 and 1/2 hours and when all was said and done they were extremely impressed. They said he has fantastic muscle tone and was showing strengths that most typical infants don't. The speech therapist commented on how well his mouth tone was and how he kept his mouth closed and how (after he took a cat nap) he was "talking with me". They actually even questioned if his Down Syndrome was a true Trisomy 21 diagnosis or if the genetic test had shown mosaicism. The test shows a true Trisomy 21. When they left Don and I were feeling extremely positive.
The next day I got the call from my work that we had miscalculated my maternity leave and that it was actually ending that FRIDAY and I was expected to be in work MONDAY!!! I had a panic attack! My baby sitters were all set for my return January 3. So I spent the next few days scrambling to set up someone to watch Presley. Fortunately my work was understanding that I could not get a sitter for everyday until December 23 and are allowing me to work 2 days this week and only 2 days next week. Thankfully my mother and sister-in-law were able to help Monday and today while I went to work. And I know it didn't take too much convincing lol
Saturday Presley got to meet Santa again (this Santa is my favorite). He and his cousin Victoria got a chance to take a picture with Santa at Fairfield Gardens. With a bit of hesitation, Victoria sat next and held Presley's hand like she promised...
The day following Presley's 2 month birthday our neighbor Chris took some pictures of our little man. He asked if he could take them because he wanted to practice taking photographs of a baby as he and his wife were expecting their first together in January. Of course I was more than happy to let him take the pictures. Presley was a good boy and even seemed to enjoy having his pictures taken....He is such a handsome boy! Here are just a few of my favorites.... ***Thanks Chris and Zack!! & Congrats to Chris and Megan on their beautiful baby boy who was born this morning!
On Sunday December 4, 2011 Presley was christened at St. Anthony's Church in Hawthorne by Msgr. Kupke....the same priest who married Don and I. It was important to us to have him christen Presley as he was such a big part of Don's young life (Don went to catholic school). There were 3 other babies there that day, and out of the 4 of them, Presley was the best behaved. When Msgr. Kupke anointed his chest with oil, Presley reached out and grabbed his finger and would not let go. It was such a special moment. I felt this was Presley's way of saying that he was ready to be welcomed into the church. Then of course it was time for the holy water to be poured over the heads, and you can see the nervousness sneak onto the faces of the parents of the other children. Of course as soon as the water ran over their little heads, they began to cry... Then it was Presley's turn....Msgr. Kupke called us up and began pouring the holy water over his head, and he didn't make a sound. He actually seemed to enjoy it! (which I knew he would since he LOVES his tubby).
The day after the christening Early Intervention finally came. They asked a ton of questions and attempted to "play" with Presley. Unfortunately he was in no mood to play. He was so tired and just wanted to sleep (which was my fault because I gave him a bath right before they arrived because he still smelt of the oils). He fussed and cried and was angry, which was completely atypical for him. Thankfully they didn't mind at all. The meeting lasted about 2 - 2 and 1/2 hours and when all was said and done they were extremely impressed. They said he has fantastic muscle tone and was showing strengths that most typical infants don't. The speech therapist commented on how well his mouth tone was and how he kept his mouth closed and how (after he took a cat nap) he was "talking with me". They actually even questioned if his Down Syndrome was a true Trisomy 21 diagnosis or if the genetic test had shown mosaicism. The test shows a true Trisomy 21. When they left Don and I were feeling extremely positive.
The next day I got the call from my work that we had miscalculated my maternity leave and that it was actually ending that FRIDAY and I was expected to be in work MONDAY!!! I had a panic attack! My baby sitters were all set for my return January 3. So I spent the next few days scrambling to set up someone to watch Presley. Fortunately my work was understanding that I could not get a sitter for everyday until December 23 and are allowing me to work 2 days this week and only 2 days next week. Thankfully my mother and sister-in-law were able to help Monday and today while I went to work. And I know it didn't take too much convincing lol
Saturday Presley got to meet Santa again (this Santa is my favorite). He and his cousin Victoria got a chance to take a picture with Santa at Fairfield Gardens. With a bit of hesitation, Victoria sat next and held Presley's hand like she promised...
After a great weekend (which went too fast) I had to get ready for my first day back at work....which I was not happy about. With much hesitation I awoke Monday morning and got ready for work. My drive was a quick one since Presley and I stayed at my parents the night before (my mom was watching him). I actually kept myself composed and didn't cry at all on my drive. I felt good and thought maybe I was ready to go back. I walked in the door and saw the surprised look on my co-workers faces to see me there. As soon as Joanne put her arms around me I began to cry. I thought wrong. I was not ready to be back...and I definitely did not want to be there. Fortunately for me, I had to leave at 1:30. Early Intervention was coming for the IFSP meeting at 3:30 and I needed to pick up the baby and then drive the hour home. I made it right on time.
The IFSP meeting went well. We reviewed my pregnancy history to make sure everyone had been on the same page and the therapists recommended the services they believed he needs. I was relieved to find out they only recommend a physical therapist come to the house once a month for the next 3 months. We set a few goals which I know Presley will meet in time. I am looking forward to setting up the first appointment in January! Hopefully he will be sitting on his own by the time the 3 months is up!
Today was my second day back to work and was a lot easier than I had anticipated. I seemed to fall back into the groove of things and actually kind of remembered the programming of my students! I just hope I remember everything when I go back next Thursday!
OK so with all of that finally written, I can hope that I will be updating more frequently before the end of the year (OMG!) I still have yet to decorate for Christmas and finish my shopping....Hopefully I can get everything done without losing my mind!! If by some chance I do not get to write again soon....Have a Merry Christmas and a Happy Holiday!!!
Monday, November 28, 2011
Days Fly By
The past few weeks have been so busy around here. Between seeing the geneticist, visiting my work friends, Thanksgiving, going to Long Island to visit my family, and planning Presley's Christening I barely have had any time to sit and write.
Since I last posted, Presley turned 2 months old. He is getting so big and his personality is beginning to show. He smiles at me all the time now and is starting to "laugh" at my silly faces.
Yea, I know he looks like a prisoner in that outfit, but I swear the stripes are blue and not black! LOL
The day before Thanksgiving, Don, Presley and I went to see the geneticist. We had some questions that we needed answered. The geneticist was fantastic and so super helpful. It was confirmed that Presley does have a true Trisomy 21 and that his Down Syndrome was just a fluke happening. We also found that when we decide to have another baby, there is only a small percent chance that our next will have it. Another Dr. had come in to see Presley (I think she was a respiratory doctor, or ear, nose & throat doctor) and she said he had no breathing trouble and looked great....well everything except his belly. She had said it was hard and a bit distended due to him not pooping in a day. Wouldn't you know the minute she left he went and his belly was soft again. They were all very impressed with his overall strength and were commenting how they think he is going to roll over before we know it!!
After the appointment, I stopped by my work to visit my students then went to lunch for a bit with a few of my co-workers. All of the girls just absolutely adored him. He was passed around from one to the next, and I assure you he didn't mind......I really think he enjoyed it! I even think we was flirting with them! By the end of the day he was exhausted!
Thanksgiving was a busy day too. We went with Don's family for dinner and dessert. It was the first time some of his family got to meet Presley. And of course they loved him....
Since I last posted, Presley turned 2 months old. He is getting so big and his personality is beginning to show. He smiles at me all the time now and is starting to "laugh" at my silly faces.
The day before Thanksgiving, Don, Presley and I went to see the geneticist. We had some questions that we needed answered. The geneticist was fantastic and so super helpful. It was confirmed that Presley does have a true Trisomy 21 and that his Down Syndrome was just a fluke happening. We also found that when we decide to have another baby, there is only a small percent chance that our next will have it. Another Dr. had come in to see Presley (I think she was a respiratory doctor, or ear, nose & throat doctor) and she said he had no breathing trouble and looked great....well everything except his belly. She had said it was hard and a bit distended due to him not pooping in a day. Wouldn't you know the minute she left he went and his belly was soft again. They were all very impressed with his overall strength and were commenting how they think he is going to roll over before we know it!!
After the appointment, I stopped by my work to visit my students then went to lunch for a bit with a few of my co-workers. All of the girls just absolutely adored him. He was passed around from one to the next, and I assure you he didn't mind......I really think he enjoyed it! I even think we was flirting with them! By the end of the day he was exhausted!
Thanksgiving was a busy day too. We went with Don's family for dinner and dessert. It was the first time some of his family got to meet Presley. And of course they loved him....
This past weekend we went to Long Island to visit my cousins for their birthdays. It was a long car ride from home and Presley slept the ENTIRE way! I was so thankful that he did! He woke up just as we arrived at the house and was greeted with smiles and everyone fighting over who would be the first to hold him. He loved every minute of it. He barely cried all day and really only did when he was hungry. Napping was not an option for Presley as he was too interested in what was going on around him. He wanted to be with the adults and see what was going on. I tired to put him down in his travel bed for a nap when he had fallen asleep at one point in the early evening, and this is what we found when we checked on him a few minutes later...
Hello Mommy :o)
Today I spend the day shopping with my mom to get everything we need for Presley's Christening on Sunday. He spent the day with his cousin Victoria (and my brother and sister-in-law, too). She must have tired him out because he slept all the way home....we even stopped along the way to pick up Don from work.
Don, Presley and Halo
This was the longest Halo stayed near Presley since he was born! I think she is finally starting to get used to him being around.... and of course loving him too!
With all that has been going on I haven't had the opportunity to say how thankful I am for the unconditional support of my family and friends. THANK YOU! And a special thank you to my husband for being my everything....I LOVE YOU DON!
Wednesday, November 23, 2011
Presley's First Visit with Santa
This past weekend Don and I decided to get away to the Poconos. On Saturday we met up with my sister-in-law, Kim, and niece, Alexa, at the mall to get Presley his christening outfit. Kim bought him this adorable Santa outfit so we decided to take him to see Santa. I took this picture while we were waiting on line to see the big man. I just love that face!!!
And of course we had to get a picture of Presley and Alexa with Santa!
Thursday, November 17, 2011
Unspoken Moments
So you know when you are looking at your baby and they look you in the eye for the first time and really seem to recognize you....or when they look at you and smile?? These are unspoken moments of love. I witnessed a moment like this between Presley and my dad last night.
I was at my parents house visiting while Don was at work. I had an opportunity to run out and get some needed shopping done (babys r us & toys r us). I didn't want to drag Presley along because he is sick and it was raining so I left him with my mom. I got back to their house just about an hour later and Presley loudly informed me that it was time for him to eat. Once he finished, he took a quick nap then woke up once the house started bustling with people. I decided to put a blanket on the floor and do some tummy time. Within moments of laying on his belly he fell fast asleep and didn't wake up until 4pm! I guess he was able to get some relief from the congestion and coughing...yea yea I know the Dr's say "back" to sleep, but I couldn't bring myself to disturb him so I let him be. Once he woke up, I knew he would be hungry, so I made sure to have his bottle ready quickly. I was right. He was starving. Just as he finished his bottle, my dad came home from work. I immediately handed Presley off to him so I could quickly pack up the car to leave. And of course, the moment I stepped away he started crying. I ran to the car bringing the first batch of stuff and quickly ran back into the house to get the next. Presley was still crying...so my dad began singing to him (and my dad can sing very well)....
"Wise men say, only fools rush in. For I can't help, falling in love with you..." Presley calmed down, opened his eyes and looked right at my dad. As my dad kept singing, Presley kept staring at him....it made me smile and brought tears to my eyes knowing how my dad felt... I know it has been a while since my dad has had a moment like this...and I know it won't be his last...
Presley's First Cold
So for the past week, Presley has been battling a cold. He has just a bit of congestion in his chest. I took him to the pediatrician and was told that his lungs were clear (thank goodness) and his nose looked clear as well. It makes me feel so helpless knowing there is nothing I can do to make it go away or make him feel better. I will just have to wait for the cold to run its course. Presley on the other hand is handling it much better than I am. I am a nervous wreak....He is in good spirits and goes about his day like any other. The Dr. said as long as he is eating and doesn't get a fever to not worry. Today he actually had 5 oz of formula with each feeding, and sucked the bottles dry! I guess I really don't have to worry about him not eating! Hopefully he gets better sooner than later because I just can't stand to see my little baby sick....
Next Tuesday Early Intervention is coming to assess Presley for the first time. Hopefully they will have some good things to tell us. I do lots of "therapy" with him daily. We work on tummy time and work on strengthening his neck by making him look side to side. I give him massages after every bath to make him aware of his muscles (it also relaxes him). I talk to him and tell him what part of his body I am massaging. I talk to him all day long and read to him when I can. I like to think that what I am doing has been helping. I guess I'm going to have to wait to see...
Thursday, November 10, 2011
Where is the time going?
Fast forward to 2 days ago....It seemed as if Presley had yet another growth spurt over night. His newborn clothes seemed a little shorter and a bit tighter than they did the day before. His diapers were getting too small for his body (which still looks so little to me). I actually spent the day yesterday changing his diaper (and outfit) just about every hour. Last night I decided it was time to put Presley in the size 1 diapers. It was very hard for me to do emotionally. The diaper looked so big on him just as the newborn diaper looked on him shortly after he was born. This was the moment I realized that my baby is getting bigger, and my baby will continue to get bigger and there is nothing I can do about it. I kind of don't want him to get bigger.
I think I am having a hard time with Presley getting bigger because I know as he grows, he will be approaching the age where typical infants begin to hit their milestones. That scares me. It scares me to think that he may not sit at the same age as others, or crawl, or walk, or talk, or laugh. I hate the thought that for the rest of his life I will be comparing him to what other kids are doing for their age and hoping that he is doing the same. And I know I have to stop that. I try so hard not to think of it and tell myself not to worry about it now and that we will cross that bridge when we get there. I have to remind myself how well he is doing now and how many things he has been doing since birth that most newborns don't do. I have to keep reminding myself that he amazed me the day he was born, and continues to do things to amaze me today. Even though I don't know what the future has in store for us, I am confident he will continue to amaze us all...
Monday, November 7, 2011
Ignorance
Tonight my husband and I (Presley too) went to buy a new SUV. We had been there for what seemed like hours and were in the final stages of negotiations when the sales manager decided to tell us a quick story about his uncle from Korea. He was telling us how he gave his uncle some financial advice and unfortunately he decided not to listen. He said , "My uncle was retarded and didn't listen to my advice." My husband immediately took offense and demanded we leave. I don't think the sales manager had known what he had said to make my husband so angry. My husband informed this young man that our son has Down Syndrome and he finds that word to me highly offensive. I can tell right away the sales manager became embarrassed and uncomfortable. He began apologizing to me and my husband, but my husband did not want to hear it. He wanted to leave. I had to calm my husband down and explain to him that unfortunately there are a lot of ignorant people in the world who use the word "retarded" too freely. The manager didn't know Presley has downs and I am certain if he did know that word would have never come out of his mouth. I had to remind my husband that in our lives we are going to undoubtedly encounter more people than we would like who use that word, but that doesn't give us the right to get mad at them. We have to educate them as to why it is unacceptable to use that word and calmly tell the person why we find it offensive and tell them about our son. Education is the best weapon against ignorance and I plan to use my weapon whenever I can.
Friday, November 4, 2011
Thankful
The past few days for us have been busy. We have been out and about pretty much everyday. We have gone out to lunch with a friend and went car shopping, visited with family and gone to dinner with Daddy. Through all the traveling and being put in his car seat and then taken out again, Presley has been a trooper. I have received so many compliments from different people on how good he is. He is just so content and I am thankful for that.
Today Presley and I get to spend some time together at home and watch a little T.V. While watching the show The Talk, they had a guest and his wife on the show who were on the reality show The Amazing Race. They were talking about how they felt about being on the show and being away from their children (they had 4). They said it was difficult (I can only imagine) especially since their youngest was born with hydrocephalus and they think she may also have cerebral palsy. She is 3 years old and is functioning at about the same as a year and a half year old. My heart ached for them. But then they began to say how much they look up to her and how much she has taught them. They see her everyday and see her amazing strength and strong will to never give up. How amazing! That's when I looked down at Presley and begin to realize how lucky we really are and how many things in my life I have to be thankful for.
I know Presley will one day roll over, and I am thankful for that. One day he will sit up and hold his head up on his own, and I am thankful for that. I know one day he will push himself up on all fours and begin to crawl, and I am thankful for that. I know one day he will pull himself up and begin to walk on his own, and I am thankful for that. I am thankful for each milestone he may or may not reach. I am thankful for the smiles everyday and the giggles that are to come. I am thankful for each and every time he wraps his tiny hand around my fingers and squeezes so hard, and doesn't let go. Presley has a clean bill of health to date, and for this I am thankful. Our families have shown amazing support and look they forward to coming along with us on our journey, and for them I am thankful. I am thankful for all that Presley will teach me on this journey. I am thankful for the future and all we will go through together. But most of all, I am thankful to God for my beautiful baby boy I have been blessed with.
Today Presley and I get to spend some time together at home and watch a little T.V. While watching the show The Talk, they had a guest and his wife on the show who were on the reality show The Amazing Race. They were talking about how they felt about being on the show and being away from their children (they had 4). They said it was difficult (I can only imagine) especially since their youngest was born with hydrocephalus and they think she may also have cerebral palsy. She is 3 years old and is functioning at about the same as a year and a half year old. My heart ached for them. But then they began to say how much they look up to her and how much she has taught them. They see her everyday and see her amazing strength and strong will to never give up. How amazing! That's when I looked down at Presley and begin to realize how lucky we really are and how many things in my life I have to be thankful for.
I know Presley will one day roll over, and I am thankful for that. One day he will sit up and hold his head up on his own, and I am thankful for that. I know one day he will push himself up on all fours and begin to crawl, and I am thankful for that. I know one day he will pull himself up and begin to walk on his own, and I am thankful for that. I am thankful for each milestone he may or may not reach. I am thankful for the smiles everyday and the giggles that are to come. I am thankful for each and every time he wraps his tiny hand around my fingers and squeezes so hard, and doesn't let go. Presley has a clean bill of health to date, and for this I am thankful. Our families have shown amazing support and look they forward to coming along with us on our journey, and for them I am thankful. I am thankful for all that Presley will teach me on this journey. I am thankful for the future and all we will go through together. But most of all, I am thankful to God for my beautiful baby boy I have been blessed with.
Tuesday, November 1, 2011
Just Thinking
The weather is changing and getting colder and it is getting darker earlier. When the season changes from Summer to Fall (or in this case Summer to Winter), I begin to think. Today was one of those days. I started thinking about my life; where I have been and where I am going. I know the path I am headed down is going to be a long and sometimes hard one.....I look down at my son and instantly all my fears and apprehensions disappear. I look at him and smile as my heart nearly explodes. I love this little man. I love his eyes, his nose and his little lips. I love when he looks right into my eyes and smiles. He makes my heart melt. I think about the last 6 weeks of his life and can't help but smile. I can't believe it has been 6 weeks since the doctor placed him in my arms. It has been 6 weeks since I met the tiny person who would change my life forever. It has been 6 weeks since I met the little man who would be my world. I am so in love.
Daddy, please don't go
Mommy meet Presley...Presley meet your mommy
Monday, October 31, 2011
Happy Halloween!!
Today I decided to be a little low key being Presley is only 6 weeks old. I didn't want to take him door to door just yet. We did get out of the house and go see Grandma Pat at work, then went over to Grandma and Grandpa's house to help hand out candy to the Trick or Treaters. As the doorbell continued to ring as the night went on, I actually got a little excited for next year. My husband and I were talking about the fun we would have when Presley is older, where we would take him Trick or Treating, and what he was going to be. It's a good thing I have a year to think of a costume for next Halloween because I know it is going to be hard to top this one! (Thanks Aunt Carol & Kami).
Happy Halloween! Check out Presley's costume!!! Who better to be for Halloween than his namesake...Elvis Presley. LOL
I hope everyone had a safe and happy Halloween!
Sunday, October 30, 2011
And our Journey Begins
~OUR BEGINNING~
After a very long 9 months, the day we waited for had finally arrived. Presley Edward was born on September 20, 2011. His due date. I arrived at the hospital in the early morning hours of that day. After only a few hours of labor, my Dr. informed me that things were not moving the way he had liked and that I would have to have a c-section. Before I knew it, I was whisked away into the operating room. The c-section began exactly at noon and at 12:14pm Presley Edward Ryan was born. I'll never forget the joy and happiness I felt the moment they held up my baby boy for me to see. The nurses whisked the baby away to be cleaned and weighed and motioned for my husband to follow.
Just a few short moments later, my husband walked over with Presley in his arms and sat down beside me. I took one look at him and knew immediately something wasn't right. He had tears in his eyes and had a look of sadness and fear on his face. This is where our "Trip to Holland" would begin.
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.
A few minutes after I arrived in the recovery room, my husband came and stood by my side. He looked at me with red, teary eyes and said, "He has Down Syndrome." All I could say was that it was OK and that everything was going to be OK. The next few days came and went in a blur. I remember the insane amount of visitors (I am still surprised we didn't get in trouble) and the various doctors coming in and out. Overall Presley was in great health. No thyroid problems, no heart issues, no hearing problems. The only thing "wrong" was the assumption he has Down Syndrome. I, however, was not 100% convinced....I was going to wait until we got the definite results of the genetic testing before I talked about it.
A few days later it was time to go home. Five days later I got the call from the pediatrician and he confirmed that Presley has Down Syndrome. I cried.
Fast forward five weeks to today.... I still sometimes cry, but then I look at the little boy in my arms and my heart just fills with love. I know everyday is going to be a journey full of smiles, laughs and sometimes tears. For this reason I will write...
After a very long 9 months, the day we waited for had finally arrived. Presley Edward was born on September 20, 2011. His due date. I arrived at the hospital in the early morning hours of that day. After only a few hours of labor, my Dr. informed me that things were not moving the way he had liked and that I would have to have a c-section. Before I knew it, I was whisked away into the operating room. The c-section began exactly at noon and at 12:14pm Presley Edward Ryan was born. I'll never forget the joy and happiness I felt the moment they held up my baby boy for me to see. The nurses whisked the baby away to be cleaned and weighed and motioned for my husband to follow.
Just a few short moments later, my husband walked over with Presley in his arms and sat down beside me. I took one look at him and knew immediately something wasn't right. He had tears in his eyes and had a look of sadness and fear on his face. This is where our "Trip to Holland" would begin.
WELCOME TO HOLLAND
by
Emily Perl Kingsley
Emily Perl Kingsley
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.
A few minutes after I arrived in the recovery room, my husband came and stood by my side. He looked at me with red, teary eyes and said, "He has Down Syndrome." All I could say was that it was OK and that everything was going to be OK. The next few days came and went in a blur. I remember the insane amount of visitors (I am still surprised we didn't get in trouble) and the various doctors coming in and out. Overall Presley was in great health. No thyroid problems, no heart issues, no hearing problems. The only thing "wrong" was the assumption he has Down Syndrome. I, however, was not 100% convinced....I was going to wait until we got the definite results of the genetic testing before I talked about it.
A few days later it was time to go home. Five days later I got the call from the pediatrician and he confirmed that Presley has Down Syndrome. I cried.
Fast forward five weeks to today.... I still sometimes cry, but then I look at the little boy in my arms and my heart just fills with love. I know everyday is going to be a journey full of smiles, laughs and sometimes tears. For this reason I will write...
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