Daisy

February 10, 2012 Leave a Comment
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Daisy is a smile of hope for everybody that knows her. She is beyond sweet and is an angel in our family and community. One spring morning in 2010, we felt the urgency to find our daughter with Down syndrome. One day later, we were notified of her situation and adopted her on a beautiful summer day. When one receives the news that they are having a child with Ds or any disability there are many emotions, fears, and feelings of uncertainty. This is when I’m reminded of the comforting words in Psalms 46:10… “Be still!” There is hope! Don’t give up! There are many resources and support groups in every community wherever one lives, or on the world of on-line. Knowledge is power and as one finds out about all of the support and mingles with families like theirs…they can find themselves with a breath of fresh air. If the situation still feels as if it is more than one can handle that is absolutely respected and gratefully understood. It is a beautiful thing to know what one can handle, and to be honest with ourselves. If this is the case, hope still smiles brightly. There are thousands of couples hoping to adopt a baby and welcome them into their family forever. However the situation turns out…in the end…all lives will be blessed by the experience of this angel with “special needs.”

Daisy’s mommy blogs at Adoption Is Love In Motion

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Max

February 7, 2012 Leave a Comment
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“We often think that having a child with T21 {Trisomy 21, aka Down syndrome} is like gaining membership to a secret club, a club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen.” I love this quote by fellow blogger, Nicole Maher. It describes exactly how I feel about adopting our son, Max, who happens to have Down syndrome.
This is the story of how he came into our lives:


We witnessed so many small miracles that amounted to the amazing miracle of Max joining our family May 1st, 2009. I’m not going to list them all here, but I wrote a lengthy post with many more details on our family blog, Two Dogs And A Fish, if you would like to read more.
I have had several inquiries as to what made us say ‘yes’ to adopting a child with special needs. That wasn’t our intention when we started the adoption approval process, but God had other, better, plans for us. We had intentions of adopting a “healthy, Caucasian, newborn” to be the perfect match for Piper, our then 2 year old. We talked a lot about what type of child we would prefer. Honestly, we were really picky at first. As time went by, we thought of new ways to ‘promote ourselves’ in the adoption world. We sent out pass-along cards, put our profile on adoption websites, and told everyone we knew that we were looking to adopt.

One day, I got an email from ParentProfiles.com advertising a class on alternative ways to adopt cheaply outside of LDS Family Services {LDSFS}. My hubby, Steve, is more the “you research and then tell me what I need to know” type, so I went to the class by myself. It changed our lives! This class was incredible. I cried half the way home. I was moved. Kelly, the class presenter, has adopted 6 children from various countries. She had a way of explaining that “special needs” isn’t as scary as it might sound. We weren’t planning on going out of the country to adopt, but there were other criteria that I realized we would be open to, broader acceptance of ethnicities and learning disabilities, etc. Kelly recommended several websites that specialized in special needs and also a couple of books to read. I went home and told Steve about the class. What really struck me the most, is that we were approved through LDSFS along with around 2000 other couples across the US. There aren’t that many babies being placed for adoption. We needed to think outside the box. We needed to be more open. I could just feel it. Kelly mentioned that there are millions of children already born in this world who will die if someone doesn’t adopt them, bring them to the US {or elsewhere} where they can get the proper nutrition and medical care they need. Contrast that to sitting and waiting to get “matched” with a birthmom locally. If someone were to “turn down” an infant through LDSFS, it would be adopted by someone else immediately. That hit me. There was a way to make a bigger difference in a child’s life. Kelly felt that raising her ‘special needs’ children is a calling from God that she is so thankful for. They may not even be alive today if she and her husband hadn’t been there for them.

So I told Steve about these agencies we had discussed in the class. One specifically I had mentioned was Reece’s Rainbow specializing in children with Down syndrome {Ds}. Steve commented that although he was willing to adopt a child with Ds, he wasn’t specifically seeking one out. I felt the same. We talked about being more open on some other criteria, and I went on our adoption profiles and checked some additional boxes of what we would accept. I believe Ds had always been checked, but I can’t remember. The class was on a Friday night. Monday, I went to the library and checked out the two recommended books from the class.

I decided to read the shortest book first. It was titled, “One Tattered Angel” by Blaine Yorgason. It was a tear jerker. It is the true story of a couple who adopts a baby without a brain. They soon realize that this infant is truly an angel. There is also a character, Fred, who “had limitations” and I assumed he had Ds, although it didn’t ever specifically say. ‘Fred’ helps the author realize that Jesus loves us and knows our needs, and especially loves His ‘tattered’ children. As I finished reading it, I remember thinking, wow, we have to be open to whatever is in store for us. The next day, Thursday {less than a week after attending Kelly’s class and changing our criteria on our profiles}, I got a call from Angela at Abrazo Adoption Associates in Texas. I was driving down to the Tulip Festival at Thanksgiving Point so I didn’t answer the phone. She left a message asking me to call her back if we were interested in a three week old, multi-racial, infant boy who had Down syndrome and a heart defect. I started crying as I listened to the message. I called Steve and asked if he was really ok with the whole Ds part. {We didn’t know enough about the heart defect to be scared of that part, and maybe that was a good thing!} He was, and wanted more info. So when Piper & I got to the Tulip Festival, I let her run around for a bit and called Abrazo back. It was really windy and I couldn’t hear a lot of the conversation. What I did gather, was that this little “baby Noah” was in foster care and needed a home right away. Angela told me their website had a picture of “baby Noah” on it that I could see when I got back home. The first step was to fax them our home study and we’d go from there. They had seen us on Parent Profiles and therefore, knew we had our home study and background checks completed. I called Steve and asked him to go to LDSFS and have them fax our home study to Texas that afternoon.

Friday I called Abrazo to make sure they got our fax, but they were already closed for the weekend. So we knew nothing more over the weekend. I searched Parent Profiles to see how many other couples would also accept Ds – 10 of the 300 would. So I assumed they had contacted all 10. Steve & I prayed a lot over the weekend, talked pros and cons, researched more about Ds online, etc. We decided that if we were “picked” we would say “yes”. How could we not? An angel was being sent to us to care for. Who wouldn’t want an angel living within their home?  That’s how we feel about Down syndrome. We knew this baby would be more special than any typical “healthy, Caucasian, newborn” we might be matched with later.

Monday I talked with the adoption agency and they said we were the only family they were considering. When the agency asked me how soon we could get there, that’s when the reality set in. They wanted us there that week. One afternoon as Piper and I were driving all over town running errands, she said from the back seat, “Mommy, do you know why we’re getting a baby?” “Why?” I asked. “Because Jesus loves us.” Tears. Piper was so excited to finally be a big sister. We told her to the best of a 3 year old’s understanding what was happening. She knew we had to fly on a plane to get our baby. But in the couple of days before hand, she kept asking, “Am I a big sister yet?” She began telling everyone that she was a big sister.


We experienced many more miracles that week getting everything in place to go get Max. Thursday morning I called and booked our flights for 5:00pm that evening. I packed for me, Piper, and “baby Noah” in about two hours. The only things I forgot were my cell phone charger and my camera USB cord. Not bad. We somehow got the dogs to the kennel, got packed, and made it to the airport on time. But then our flight was delayed. That wouldn’t have been such a big deal, except we had to connect to another airline in Dallas – the ONLY way to get to San Antonio by 9:30am Friday – the time we were suppose to pick up “baby Noah”. The flight was delayed an hour, yet was only 15 minutes late on arrival in Dallas. We had plenty of time to make the connecting flight. Another miracle. We made it to the hotel around midnight on Thursday, exactly one week after the initial phone call from Abrazo. Of course we didn’t sleep. We kept looking at each other with that ‘is this for real?’ look.

The Abrazo adoption agency was fabulous. They took Piper to meet Max first. {We decided to re-name him Max and keep Noah as his middle name to honor the birthparent’s original choice.} They helped her carry him in to us. It was the cutest thing ever. And when we met Max for the first time, it was love at first sight. We had talked about what it might be like, wondered if we might feel like we were just ‘babysitting’. But we knew he was ours. And Piper and Steve pretty much fought to see who could hold him the most that first hour or two at the agency finalizing paperwork. Piper asked, “Do we get to keep him?!” She kept kissing him and telling him she loved him. She would look at his hands or nose or whatever and say things like, “Oh, he’s so cute. His hands are so cute.” She kept ‘petting’ his hair.

I had a wonderful experience meeting Max’s birthmother, Melody. She had a lot going on and was having an emotional time with learning that the agency had picked us after a couple of other families didn’t end up working out. When we finally met and were able to talk about our respective journeys up to this point, we were both reassured that God had His hand in this process. She had wanted a family in Texas to adopt her little Noah so that she could have a more open adoption. She couldn’t understand why that wasn’t happening. Now we both know. Max was intended for us. We talked a lot about stuff and a lot about nothing. Personal stuff. She is part of our family now, too. Adoption is bittersweet. But there was a peace about our meeting. Max is loved by so many wonderful people.
Fast forward almost 3 years.


We learned quickly that Max had a serious heart defect and needed open heart surgery at 5 months old. And the hospital where he had surgery, just happened to be the same one in that “One Tattered Angel” book I read. Oddly enough, I felt very at peace with all this. My husband was a wreck though – ha. Max spent a week in the hospital, and the repair was 100% successful. Over the last three years, our lives have been fairly normal. Sure, Max has various therapies throughout the month, including preschool skills, speech, & physical therapies. And he has been hospitalized once each winter with respiratory crud. He was diagnosed with mild sleep apnea and had his tonsils and adenoids removed a few months back. But none of that taints the amazing, loving, happy, giggly, snuggly, and destructive true-blue boy we have in our family! What amazes me even more, is the love that his sister, now 6, has for him, without truly even understanding what “Down syndrome” means.
Would we change anything about Max? No, well, actually, I could have done without the reflux he had for the first two years!
The best part about being a mom to a special needs child? It’s that quote – “the club you never knew you wanted to be in or even existed, but once you are in, you are so thankful that you were chosen”. That club consists of a community of other parents and children who ‘get you’. They understand not to bring a snotty nose kid to a playdate because it could send yours to the hospital. They get that your child does things a little slower and needs a little more patience in learning new skills. They get that your life has been changed for the better, just like theirs. That most siblings with brothers or sisters who have special needs, tend to be more compassionate on the playground, tend to accept others who look or act differently. And there is an instant bond when you meet them, whether by blog-o-sphere or in person. There is a ton of support online, through blogging, facebook groups, local UDSF chapters and playgroups.
It’s not all easy peasy. Hospital stays are hard. Watching your neighbor’s kid run and ride a trike at 2, when yours is barely walking and doesn’t say a word yet. That can be hard, but only for a moment. Because then you look at your kiddo and realize how lucky you are to be ‘in the club’. A club your neighbor will never experience the way you do, making the lasting friendships, appreciating the milestones, watching all the hard work in therapy pay off. It’s a joy. And if we ever decide to adopt again, yeah, it’ll be another kiddo with Ds. ‘Cause they’re particularly awesome!

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Jack Gunner

January 20, 2012 3 Comments
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Jack Gunner Morrow was born on 6-6-11.  Jack would be my fourth child. His siblings were born in 02, 09, and 10. To say that I was a busy mom before Jack arrived is an understatement! When I was pregnant with Jack we got a call when I was almost 20 weeks along saying that I had a higher percentage for having a baby with Down Syndrome. I was a mom with three perfectly “normal” babies so this was a shock. I guess I took for granted that what God has planned is very different than my plans! We did the level 2 ultrasound which showed nothing except our third boy was growing in the most sacred of places. On June 6th with Down syndrome and child birth far away from my mind I had Jack almost 4 weeks early! Tears of joy and relief flooded my eyes when Jack was born with no problems! I was overcome with emotion when I finally got to hold this tiny miracle! I have c-sections so I always have to endure that agonizing hour in recovery. I knew as soon as I held him something was different. I pushed Down syndrome to the back of my mind until the following day when my husband said they were testing him.

All this did was bond me with that tiny life even more. It would be a week before we got the results. In that week everyone had their own opinion. No he doesn’t have it to yea maybe’s. I honestly didn’t think it mattered until, home alone, I got the phone call. I groaned and cried at the top of my lungs. I think my mind was going through all the difficulties we would face. Mostly though I thought about my child’s life being hard and all the things he couldn’t do. I researched and looked high and low for support groups. I learned the difference between possibility and reality. Then I decided as long as he was healthy he’d be just fine. Not long after that we discovered he had two holes in his heart. I walked out of the cardiologist office that day ready to scream, cry, and possibly hit somebody with the flip flop I was wearing! Other than that small defect he was healthy. With medicine he could wait until he was 2 for the surgery. The day Jack was born he looked at me as if to say,” I know you!” He always looked like he knew something I didn’t. He loved to talk to me! He loved to kiss! I’ve never had a better baby. If he woke up before me he’d wait patiently. If I had to deal with his crazy brothers first he didn’t mind. He knew once I picked him up and started talking to him it was all over. I couldn’t quit kissing or talking to him after that. He was setup with Early Intervention and I absolutely loved the world of special needs. I loved the connection the parents shared and the love they were all willing to share! I had Jack for 6 1/2 months. I’m crying as I write this because its still surreal that my sweet man is gone. Our last two months together were spent in the hospital. He died December 27, 2011 from pulmonary hypertension complications. I will never forget the short time I was allowed in the special needs world. Jack accomplished so much in his short life that this momma is left in awe!

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Meaghan

January 13, 2012 4 Comments
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“I have gone through a lot in my life but I have never thought I would go through this ”

My special needs journey started on October 16, 2011 when I went in to labor with my beautiful baby girl Meaghan.I was somewhat nervous to be having a baby but not too much since I already had a child that was 1 1/2 at the time. When I was in labor I recall going out of it like I was not there all. I could remember being put on oxygen because my baby was not breathing inside of me. I heard Doctors telling people to get out of the room and I heard people talking. I did not know what was going on at the time. My baby started to get oxygen and was breathing normal again, two hours later gave birth to her.

I immediately knew something was wrong when I did not hear the “oooos” or awwws or how “she is so cute” like I had with my older daughter when she was born. I looked around and family and friends were staring at my beautiful little girl like she was not what they had expected. No one said or did anything the nurses took her to give her a bath and get foot prints which was normal to me but when the nurse came back she had a Doctor with her I thought to myself maybe that’s the way they do it in Oklahoma since my older daughter was born in Kansas. I thought that until the Doctor started to speak. He started naming all these things wrong with my daughter like she was some kind of monster.

He said she looks like most of the kids he has worked with Down Syndrome. I began to cry and I blamed myself for her disabilities even though the doctor said its in genetics and I could not of controlled it, I still blame myself even today. A couple of weeks after bringing her home, people from my old town began to say horrible things. I was already hurt and what they had said broke me down even more. I looked up Down syndrome and everything it came with. I saw things I have never seen. I heard things I have never heard. I was horrified and felt a sense of pain I have never felt. I asked GOD to help me, and I prayed every day that if she was going to have this that it did not hurt her in any way.
A month later we had to take her to Oklahoma City Children Hospital where they poked her and poked her numerous times. The Geneticist did evaluations on her, and did things that made me so sad because if she did not have Down syndrome, then she would not have to be thrown from one doctor to the next. She was being looked upon by all doctors because she was different. It broke my heart!

About a week ago, the hospital called and told me they found Meaghan’s diagnosis positive for Down syndrome. When they said that, it hit me hard. It felt like I had been hit by a truck and didn’t know it was coming. That day everyone shut down on me. People asked, “why are you crying, you already knew she had it?”. No one could possibly understand that in my mind there was a maybe there, or I thought that maybe the doctors lied to me. When they told me it was confirmed, I no longer had that. Meaghan’s Physical Therapist has been doing so good with her, but they have noticed something different about her, so they set her up an appointment for her heart in Oklahoma City. They are worried about her sleeping all the time, and being too exhausted to do anything. The therapist said that usually babies with a hole in their heart do that, I am so scared and have been crying every day because I love her and I need her.
If i was asked about my experience with a Special Needs child I would definitely have to say that my daughter has changed my world!!! Meaghan has brought so much hope and happiness into my life, and she teaches me something new everyday, I don’t want her to go to special schools, or special anything. I will treat her as if she was no different from my older daughter,my nieces, my cousins, or anyone for that matter. I HOPE ONE DAY MEAGHAN CAN CHANGE EVERYONE’S WORLD LIKE SHE HAS MINE!:)

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Beau

January 10, 2012 Leave a Comment
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I have been trying to write this over the last year and saving it for today (his 1st birthday). It wasn’t always easy but it is the brutal truth. I wanted to share our journey to Beau with you all. Warning: There are some things that may be hard to read but these are some of the strong emotions that we went through that day. Here you go…

We had been married for four and a half years and together for ten. We were high school sweethearts! We tried and tried to get pregnant after we got married but it just wasn’t happening. We went through lots of fertility testing and everything looked good but it still wasn’t happening. We decided to try Clomid and took that for three cycles but still nothing happened. We were very discouraged and decided to turn to a clinic that combines the personal touch of old-fashioned medicine with the best that modern medicine had to offer. We met with Dr. Yew P. Ng. He did some routine blood tests and set me up with a natural diet consisting of flax seed, fish oil, magnesium glycinate, and vitamin D. I began taking that for a month and we were to return in a month to get our blood results back on all my hormone levels.

We had just went to my parents house for Thanksgiving and on the way back I began craving Spicy V-8 juice and pickle juice. We stopped at a gas station in one of the small towns on our way back home to see if they had either of those. To my luck, they had Spicy V-8 juice. My husband was joking around and said you must be having a boy because they say you crave spicy things with boys. We were laughing and wishing that this was the truth. What we didn’t know at the time!! (I was actually pregnant!)

We got home and figured that I hadn’t started for awhile so maybe I should just take a pregnancy test to make sure. I came out and said to my husband, “well I’m kind of excited.” It was just two faint lines but nothing to convincing. I figured I would take another in the morning to double check. Sure enough the same exact thing. I still wasn’t convinced. We decided to get one of the pregnancy tests that said pregnant or not pregnant. We would know for sure with this.

I woke up at about 4:30am and really needed to use the restroom. This had been happening for awhile but I wasn’t putting two and two together. I thought I could never get pregnant. I told my husband I was going to take the test right now. He said, “It’s 4:30 in the morning, just wait until later.” I had to go and couldn’t wait any longer so I took the test anyways. Right away it read pregnant. I had to tell someone because I was so excited so I decided to call my twin sister in Japan because it was 8:30pm her time. I said, “I’m pregnant….but don’t tell anyone because we are going to wait to tell people maybe at Christmas.”

We went in for our one month checkup with Dr. Ng and told him that we think I’m pregnant. He said, “I didn’t even do anything in his foreign voice.” Well he gave us hope and that must have been all we needed. He drew my blood and told us that the results will be back in a couple of hours. Hours??? We didn’t want to wait that long but we had no other choice. He said he will call us with the results as soon as he gets them. We got a call on our way back home. Sure enough, we were pregnant!! However, he did find out with all the tests that my progesterone levels were low, so he started me on progesterone cream for the first three months.

We decided to keep it a secret from our family and friends until Christmas because we wanted to surprise everyone and just be sure. It was the longest month of my life. I just wanted to tell everyone but we knew that it was better to be cautious because it still was early. We went to the doctor and got an estimated due date of August 6th. I was so excited that this had truly happened. I’ve dreamed of this all my life. Everything went well for the next couple weeks and we were able to spill the news to our family and friends. They were all very excited & shocked.

At our first ultrasound at 15 weeks, the doctor saw some soft markers of down syndrome. They said there was some thickening of the babies neck and a small white spot on the babies heart. We were shocked, scared, sad, upset, and in disbelief. This really couldn’t be happening to us?? Could it?? We kept asking ourselves, what if?? They sent us up to a perionatologist for further review. We got in about a week later and they looked and looked but couldn’t find anything concerning to them but asked us if we wanted an amniocentesis done. They said they couldn’t guarantee everything was perfect unless the amnio was done. I was so scared of needles and having a chance to miscarry outweighed my fear of the unknown. We knew no matter what the outcome was we were going to keep and love this baby we had tried and tried for. We declined the amino, so they sent us on our way. They said we needed to return when I was around 20 weeks for a routine checkup. When we went back they said that everything looked great and questioned why we were even there. We headed back to Lewiston once more with some more reassurance that everything was fine.

I was teaching the morning of May 15 when I felt a huge gush of something and told my aide I would be right back. I headed into the bathroom to find it was tons of blood. I was so scared I didn’t know what to think. I just sat there and started to cry. I thought my worst fear was coming true. I had lost this beautiful thing that had been growing & moving inside me. I told my aide what was happening and before I knew it we were off to labor and delivery. They kept me in the hospital overnight hooked me up to monitors and told me that sometimes this happens and it is unexplainable. They said to rest over the weekend and that I could continue back to regular activities on Monday.

I went back to work Monday, Tuesday, and Wednesday morning at the same time (9:00am) the same thing happened. I knew I wouldn’t be returning to work this time. I had met with my doctor that Tuesday and he said he has a low tolerance for something like this and wanted to put me on bed rest. I begged him to let me continue working because I only had 8 more days of school left. He told me if this happened again it would be a guarantee. I knew that was the end of teaching for the year. I was so disappointed and sad. However, I knew that this would be the best for Baby Beau.

I headed back down to labor and delivery to go through the same thing I did the week before. They did ultrasounds, hooked me up to the monitors, and kept me in bed all day. Have you ever had to use a bed pan?? Oh man, that wasn’t pleasant!! They were going to send me home on the 23rd if everything continued to be ok. Well the afternoon of the 22nd the reactive sheets weren’t looking right. Beau was becoming pretty quiet and not moving around. They decided to start me on the first steroid shots just in case they would have to deliver Beau they would like to get at least two doses in. I couldn’t believe what this shot did to me. She gave it to me in my right arm and the next thing I remembered was I couldn’t even move it. My arm hurt so bad!! I just wanted to cry but remembered this was good for Beau so I sucked it up. The next one, I made sure they gave it to me in my backside. It was much more pleasant as it really can be. My doctor had went on vacation for Memorial Day and told me that the on call doctor will be updated on what is going on and if things change I will be flown out. Before I knew it the on call doctor was back in our room and said they were flying me to Spokane in about an hour. I was shocked, terrified, and confused all at once. I didn’t know what was going to happen. I was scared this was the end and we were going to lose our baby boy. I cried and cried. Kyle and I met with the pastor and we prayed together before Kyle would leave to go get our stuff ready and try to be somewhat close by the time I touched down in Spokane. I knew this probably wasn’t possible since it was a 2 hour trip in car and probably 40 minutes by helicopter.

The next hour went so fast I can hardly remember what happen. The only thing I do remember was looking over and seeing a ladybug sitting on my window seal. I told Kyle that they are good luck. After we both got a glimpse at it, it was gone. It kind of put me at ease…a little. I was getting IV’s shoved into me and thousands of questions thrown at me. The Medstar nurses came in and strapped me in this thing that felt like a blown up blue sleeping bag. Then they wheeled me down the halls, down the elevators, down more hallways and loaded me up into the back of the helicopter. I literally felt like I was stuck in the trunk because the inside of the helicopter was so small. We were off. They put me on magnesium sulfate which made me a little drowsy and made me extremely hot. I remember my hand burning so bad that I just kept making a fist to try and get it to flow through a little easier. The Medstar nurse kept asking me if I was ok over the headset and I could barely answer. Yes I was physically ok but mentally I was in a dream. Was this really happening to me?? I couldn’t believe things changed so fast. The ride was bumpy and I felt like this was the end of my life. I still couldn’t process what was really happening. I closed my eyes most of the time and prayed the whole way to Spokane.

As soon as we landed in Spokane, I was unloaded and we were off for labor and delivery. The Medstar nurse said when we get close to the fish you know we are there. It seemed like hours going through the back ways, elevators, and hallways until we arrived. There were nurses, doctors, and ultrasound techs ready to check me out. I was loaded onto a new bed and next thing you know they were wheeling me off to an ultrasound room. About five minutes later, my mom showed up. They were doing another BFP (Bio Physical Profiles) to see how Beau was doing. Once again, he flunked. They were pushing and prodding at my belly to try and get him to move, but he had nothing to do with it. I didn’t know what was going on at that point. Still highly drugged up and I think he was to. We were wheeled back to our room and had more nurses and doctor meet with me. Kyle made it about an hour later. By that time I was already settled in and still not really knowing what was going on.

The next day the neonatologist met with us and explained what to expect if we had to deliver Beau early. He gave us paper work with lots of statistics and said that 29 weekers do fairly well. For the next couple days, we went through lots of BFP’s and he slowly started coming around. He was passing all of them now! The doctors kept saying how they wanted to keep me pregnant for as long as they could. Everyday seemed to get better and better until they told me that they were going to discharge me on Saturday if I had a quiet week. Kyle decided to head back to work for the week and was planning on coming back up on Friday to pick me up so we could go home. I was just not ready to see him go. I was still a nervous wreck and just wanted him by my side. I knew that wasn’t possible and cried as I thought to myself how hard it was going to be sitting there in that hospital all by myself for a week. I did have family & friends come to visit but it just wasn’t the same as having Kyle’s comfort.

Everything went smoothly until that Wednesday morning: May 27, 2009! I got up and opened my blinds because I wanted to see outside and see what the weather was like. I remember standing and looking at the high school across the way and just wishing I was at home with Kyle. I made my way to go to the bathroom in those lovely hospital gowns. We weren’t prepared at all for this trip so I had nothing. I walked into the bathroom and sat down. Next thing I remember is I felt like I had to go again but once I stood up and looked it was all blood. I instantly started crying because I knew today was the day they were going to take him. I sat and cried by myself for a minute and then pulled the emergency cord.

The nurse said over the speaker from my bed, “Alaina, are you ok?” I just remember sitting there crying not wanting to answer. She said it again. Finally, I responded back. I’m in the bathroom and I’m bleeding again. Before I knew it there were 2 nurses and a doctor there. They put me back into bed and Dr. Kelly checked me. I was 70% effaced and dilated. I just remember the horrible feeling because I was bleeding so much. Dr. Kelly kept asking me if I was ok but I wasn’t. I was scared and alone. I wanted Kyle or just a familiar face there to tell me it was going to be ok. I asked Dr. Kelly if I should call my husband. He said just to wait until we get to labor & delivery so they can do another ultrasound to see what was going on. I called him anyways and told him what was happening.

Dr. Kelly took an ultrasound but couldn’t see anything just like before. They couldn’t figure out where all the bleeding was coming from. Then his mentor Dr. Sigmund came in and checked me as well. As soon as he checked me, he said, “we need to take the baby right now.” I was clotting and they needed to go in for an emergency c-section right now. I remember looking at him and asking him, “How long do I have?”. He said, “20 minutes.” I called Kyle right away and said, “there taking him right now.” Just get here as fast as you can. I also called my mom but she didn’t answer so I called home and got my dad. I told him what was going on and he said, “he will try to be there as fast as he can.” I called my sister in Japan and I remember her saying, “just tell them to wait.” I replied back, “It’s an emergency sis…they can’t wait! I’ll be ok. I was calming her down! I just cried and cried. I knew my friends Crystal and my sister-in-law, Kellsi, were coming but I didn’t know how close they were. I called Crystal and she said she would hurry. They put more I.V.’s & wires on me and we were off. They wheeled me in to the c-section room and I remember all the people setting out tools, machines, & gadgets. I just kept crying. They gave me my spinal and I was so nervous and scared for everything else that I didn’t even remember what it felt like. Before I knew it my legs were going numb. I went to lay back down on the bed but I couldn’t move them. The nurses had to help me get them back onto the table.

I was so scared of the unknown but for some reason I never feared that Beau wouldn’t make it. I never thought… I wonder if he has Down syndrome. I just remember thinking. I hope he is at least 3 lbs and has lots of hair. I also hope he cries when he comes out so I know he is ok. Don’t ask me why I hoped he had hair but that is what was going through my head at the time.

I was set and ready to go. My sister-in-law, Kellsi, made it just in time. She came and sat by my side as the time had finally come. My arms were laid out horizontally and my face looking at a big blue sheet hanging in front of me. This was it. I was about to meet my son, Beau. The doctors started working. I could feel the pressure of there hands but nothing else. The spinal made me extremely itchy. I just kept itching between my nose & mouth. Oh… I still remember that to this day. It was the worst. I ended up itching myself raw, it was so bad. They tried to give me some stuff for it but it worked only for a bit.

Toward the end, I remember hearing the doctor ask the nurse (she was the one controlling my numbing medication) by my head, “How much longer do I have?” She said, “you’re good.” I think it was because they had so much trouble getting him out. The would say, “bed down”. The head of my bed would go down. Then, “bed up”. The head of the bed would go up. This happened for several minutes. Finally, I heard him cry just a little. I looked over to the warming bed where the NICU team was waiting to receive him and there he was. I remember crying and just thinking to myself, “I’m a mom.” The next thing I wanted to know was how much he weighed. I didn’t ever question if he was ok. I look back now and wonder why but that never crossed my mind. He was laying there all wrapped in this plastic stuff with a little white hat on. They held the oxygen mask over his face but before I knew it he was gone.

I kept asking Kellsi, how much he weighed. They finally announced he weighed 3 lbs 3oz and was 15 in. long. I was so relieved, and I couldn’t wait to go see him. However, I was still stuck laying there as they were stapling me up and getting me all ready to head down to the recovery room. The next several minutes are just a blur. I vaguely remember being rolled from the operating room to the recovery room and on my way some of our family had made it and were waiting. I think I waved to them but I don’t really remember. Then the next thing I remember was when Kyle finally made it.

He walked into the recovery room and I remember asking if he had seen Beau. He said he hadn’t yet. He was heading there right after making sure I was ok. He went in to see Beau with my dad.

Kyle had returned and in walks the neonatoligist with him to update us on Beau. He asked if we wanted family there or not and Kyle asked everyone to leave the room. The door was shut behind him and then the news came. I don’t remember all the details but I will try my best to remember. Kyle had asked him what he thinks the chances are that Beau has Down syndrome. He said that they believe that our son has Trisomy 21 also known as Down syndrome. My heart sank, my mind shut off, and everything else around me stopped. I remember thinking that this all had to be a dream. I was going to wake up soon from this and go back to my normal life. This can’t really be happening to us… can it?? I’m sure the doctor said much more but those were the only words I remembered… Trisomy 21 (aka DOWN SYNDROME).

I remember sinking in my bed, burying my face in my hands, and sobbing. I cried and cried. We now just had to wait for his chromosomal study to come back which could take weeks. I remember looking at Kyle and telling him that he doesn’t have to stay. He can leave and I’ll do this on my own. I felt like I had failed him. I didn’t give him that perfect child we had both dreamed of. It was all my fault. He looked at me and I still remember what he said. He told me that this doesn’t change his love for me. That still runs through my head everyday.

The next thing I can remember is wanting to go see Beau and determine it myself. I was wheeled down to the NICU where they wheeled me up to his incubator. I couldn’t believe all the wires, lights, & machines that he was hooked up to. I looked at my baby and I instantly knew….he had Down Syndrome. Kyle kept looking at all the positive things and was still in denial but I knew. I remember after we had left and everyone kept saying that it isn’t a for sure thing. I told my mom, you can’t tell me when you look at him that you can see it. He has Down Syndrome. Just look at him, I kept saying. I tried so hard to look past the Down Syndrome and see my baby but I couldn’t. I was devastated. This isn’t how it is suppose to be. Everyone I have talked to said that you will instantly fall in love with your baby and I didn’t. I knew that I loved him but it wasn’t the feeling I had expected to feel. The fear of the unknown was so much greater that it took over everything else.

I was released from the recovery room and wheeled downstairs to the mother & baby unit. This was where the families are suppose to go with their baby. We were going alone. I would sit in my room and you could hear the other babies crying around you. I remember thinking was I being punished?? There was many sad & lonely nights on that floor. I was up every 3 hours pumping and listening to the other families around us rejoice & celebrate while we were stuck away in the corner to think and think.

Kyle and I struggled with accepting this all. There came a point we both wanted to leave the hospital and leave Beau behind. We wanted to go home and pretend this had never happened and go back to living our “normal lives”. We kept questioning if we really could do this. We questioned why us?? Every time that question came up, I kept thinking in the back of my head….why not us? I wanted to believe we couldn’t do this so it would be easier. We both also thought it may just be easier for us all if he didn’t make it. I sit here and cry just writing this. Were we really that selfish?? How could I have ever thought that about my baby? These feelings didn’t seem normal, so we finally asked to talk with a social worker. Our doctor asked if he could stay in our room with us when we talked to her. We didn’t mind at all. We just needed some reassurance. She told us that if we didn’t have these feelings then they would be worried. She said it is ok to grieve that “perfect” child. She kept reassuring us that these are normal feelings. She gave us some literature to read on babies with Down Syndrome. I remember sitting in that hospital bed reading and reading trying to find all the answers. I wanted to read that they can outgrow this, that their is a cure, that he may just have “a little bit” of Down Syndrome. I never found any of these answers, but I did read that they are babies first and that they still need to be loved like any other baby.

I would lie to you all if I said this happened overnight because it didn’t. The more time I spent with Beau the less I looked at the Down Syndrome and the more I found my baby I had always dreamed about. The 99 days in the NICU made me question who I really was and what my purpose in life was. No longer did I worry about my needs. I realized that I needed to give Beau all my love & energy so he could get strong and come home. I just wanted our family to go back home together and start our “normal” lives.

The NICU journey was far from easy. I spent the next 99 days living in the hospital. Beau had scheduled care times every 3 hours. I first would go in and let the front desk know that mom for Beau Stevenson was there and they would page his nurse in his room to let them know. I would walk to through the double doors and go straight for the handwashing station. I would have to wash up before I grabbed a white robe to put over my clothes to keep as much outside germs away from my little man. Then I would walk back to his room where he usually had about 3-5 other little neighbors. He was always so peaceful laying there in his isolette. We would have to get permission from the nurse to open his isolette. Who has to ask another person for permission to see their baby?? He was my baby but it didn’t feel that way. I would put my hand over him and hold it over him for awhile and tell him that his mommy was here. For the first 9 days, that is all I could do was gently put my hand over him for a couple minutes before he had to be closed back up. At 9 days old, it had finally come. I held my baby boy for the first time. He was so tiny! He laid in my arms and I finally was starting to bond with him. There was no turning back now.

I lived for every 3 hours to roll around so I could head back up stairs to sit beside him and watch him. I would get a phone call from the neonatologist every morning giving me an update on Beau. Some days were good and some days were bad. It was a roller coaster ride the whole time. The hardest part about the NICU journey was being away from home and living at the Ronald McDonald House for the summer. I just wanted some normalcy but it was all stripped away from me. I layed in that room all by myself for many hours wishing we were home.

I had several breakdowns through out the journey but when it was finally time for Beau to come home, I couldn’t have been happier. We were ready to take him home and start this new life together as a family.

~~~ Now a year later, we are back in the hospital and I can’t believe it. Spending his 1st birthday in the hospital. One of these days our lives will be “normal”. After these last two weeks, I have said several times how there would be no way we could live our lives without him. He has brought such joy in our lives this last year, and I couldn’t be more thankful. I can’t believe that a year has passed and how much we have all changed just because of you Beau. Happy Birthday baby!! We love you!!

Beau’s mommy, Alaina, blogs about his journey at Blessed By Beau.

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Isaac

January 9, 2012 1 Comment
isaac

Our little man, Isaac, came into the world at 33 weeks gestation weighing in at only 2 pounds 8 ounces. He was the cutest peanut ever!

So many uncertainties went through our minds right before the c-section as the doctors prepared us for the worst case scenerio. They had seen many unusual markers on an ultrasound…….they were certain that be born with a disorder incompatable with life. We were still very hopeful after he was born that the doctors were wrong about him having a disorder, but when he was a week old the tests came back saying that he had a deletion on a portion of chromosome 10 and a duplication of chromosome 14. There was very little information about it so we didn’t know any important things such as how long he would live or if he would able to walk someday. Isaac spent a total of 7 months in the hospital his first year of life. It was a wild rollercoaster as he had one respiratory infection after another. When he was 3 months old, he had several airway abnormalities that required him needing a trach. It was quite an adjustment learning how to take care of the trach and all that came with it, including nurses coming into the home.

Since our situation was so unique, it was hard in the beginning to find anyone going through a similar journey. I began finding support networks online such as a trach board and a message board for parents with children who had rare chromosome disorders. Other things that helped me were poems and books about children with special needs. It inspired me that these parents found so much joy with their children that they wanted to write a poem about them. Of course I kept a copy of the “Welcome to Holland” poem taped to my wall for several months. I couldn’t of said it better as we landed in this unknown territory. Later on I found a few Moms in our area who were in similar situations. We occassionaly meet for coffee and talk about things that most people don’t relate to, such as Doctors, surgeries and home nursing. I also discovered that I’m not superwoman or stronger than anyone else in this world. Many people have told me that I must be so strong or a special kind of person. I’m an ordinary person who has to take care of myself in order to take care of others. I had to learn that the hard way and to remember to take a time out when life gets to be too much.

We have heard it all from doctors over the years such has he wouldn’t recognize us or know who we are. He is a very interactive boy with a smile that lights up a room when he sees his “people.”

I would also say that Nobody can put an expiration date on your child either. We had heard so many speculations on how long he would live. We came to the conclusion that everyday that he’s here is a gift. Now at 4 years he’s doing better than ever!

Isaac’s mommy, Colleen, blogs about his journey at One Day At A Time.

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Colin

January 7, 2012 1 Comment
colin

Every night when I am going to bed, I sneak into each of my children’s rooms and kiss them goodnight and say thank you.  Now that Colin has a twin bed, I might sneak in to lay with him for a minute and whisper into his ear “you are so special and I am so lucky”.

…and I really am.

However, the day he was born and we found out that he had Down Syndrome we didn’t initially feel we were so lucky.  Our journey into the world of Down Syndrome hasn’t necessarily been an easy one, but we wouldn’t trade it for anything.

Colin was going to be our first baby and my husband Chris and I were so excited.  We went to all of the doctor’s appointments together, planned and organized.  At our 20 week ultrasound, we were referred to a specialist because of a bright spot on Colin’s heart that they just wanted a level II ultrasound to look at more closely.  We didn’t think anything of it but sat through an extremely long session with a doctor that had a horrible bed side manner who went through explaining the anatomy of the heart only to throw at us that it could be a marker for Down Syndrome.  He slapped a paper on the table, said the only way we would know for sure is through an amnio and asked what we wanted to do.  We turned it down.  When we followed up a bit later, the bright spot (echogenic cardiac focus or calcium deposit) was gone and he said to us “see, your baby doesn’t have Down Syndrome”.

Despite some issues during labor and delivery, Colin quickly joined us and he was the most beautiful baby I had ever seen.  However, as soon as I saw his eyes, I just knew something was different.  They were so distinct.  Because of the craziness surrounding his birth, we are not exactly sure of the time frame, but we remember very shortly after that his pediatrician said to us that they were going to test him for Down Syndrome because he had some traits that were consistent with that diagnosis.  I was stunned and shocked to say the least.  However, since we were completely surrounded by the love and support of our family, we just were like any other proud parent.  I don’t think our “world came crashing down” until exactly a week after Colin was born when it was confirmed that he did have Down Syndrome.  I have never cried as hard as I did that day.
I think we were just really scared of the unknown.  We had so many things running through our heads and unfortunately, we were fast forwarding to far into the future.  Despite living in an emotional fog for days, nothing changed how much we loved Colin.  We just didn’t know how to handle it; what we should tell people, how would we do it, if a stranger stopped us and told us he was cute, did it mean we had to tell them?  There were so many things we just didn’t know then.

But guess what?  We have a little girl now that doesn’t have special needs, and there are many times where we still don’t have the answers.
If I could tell myself something from that time, I would say most importantly that it’s ok to grieve.  I think I felt so guilty for being upset that we were facing this diagnosis because I was scared.  But it’s ok because it IS a loss from something that you expect to be a certain way.  The other thing I would tell myself is to take it one step at a time and slow down.  I thought I needed to have it all figured out right away, but really, it’s just a long journey with many steps.
The hardest thing we face now are some challenges related to Colin’s eating (this has been an issue since day 1) and gaining the strength to walk independently.  We have tried many avenues and have just realized it’s something we need to continue work really hard on.

My FAVORITE thing about this journey is feeling like I am a part of something really big and special that most people will never get to experience in their lifetime.  We have experienced SO MUCH JOY because of Colin that it makes my heart swell.  We are part of a lucky group because each skill that our kids accomplish is so wonderful because they work so hard to get there.  And most especially, our lives are more fulfilled because of the friendships and connections we have made.

If you are just starting on your journey, just love your little baby, and take it one step at a time.  I promise you that each day will get easier.  Welcome to the journey…

Colin’s Mommy, Kelli, blogs about his journey at Love For Colin.

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Carter Jay

January 4, 2012 3 Comments
carter

I can still remember the phone call from the Geneticist like it was yesterday.

“The testing showed something. We should meet to talk about the results as soon as possible.”

Our baby boy, Carter Jay, was born on March 27, 2009.  We immediately knew that something was different about him.  To start he was a term baby, but weighed under five pounds.  He also had a cleft lip/palate and was missing his right outer ear. Carter was whisked away to the NICU where he had to be intubated and the doctors began running additional testing.  As the physical differences kept piling up, we were hopeful that these would be the extent of his condition because living in the world of Special Needs was completely overwhelming to us.  We had ZERO personal experience with kids like Carter.

After being transferred to our local children’s hospital, Carter was only a few weeks old when we got the news that he had a Chromosomal Disorder.  To be exact he had a duplication of his number two chromosomes which had attached themselves to a deletion on his number ten chromosomes.  There were no other known cases of this exact diagnosis, so Carter had to write his own book.

Some of the unique traits that Carter picked up from his chromosomal difference were mild to moderate hearing loss, cleft lip and palate, Kyphosis of the spine, and global developmental delays. He also had the most adorable long fingers and toes. Bubba Jay spent ten weeks in the NICU before being sent home on Oxygen and a G tube. I was scared to death to bring this little baby home.  I had no idea what to expect from the world of Special Needs, and to say I was terrified would be an understatement.

If I could go back to the very beginning, there are two big pieces of advice that I would give myself.  First, I would tell myself to not be scared. Just because having a Special Needs child is different….it doesn’t mean that it’s a horrible thing.  As we continued our journey with Carter we soon discovered that it was nothing short of AMAZING.

Carter changed EVERYTHING about our family, and in the best way.  He made us see what is really important. He brought us all closer together…and I’m not just talking about our immediate family, I mean ALL of our family and friends came together to support our little guy.

Every single skill that Carter mastered was cause for huge celebrations. We watched him work hard to perform even the simple tasks which made us appreciate them even more. Of course I had moments when I wished that Carter would have just been born healthy, but only seconds later I would realize that Carter would not have been Carter without his challenges.

The second piece of advice I would give myself would be to realize that doctors DO.NOT.KNOW.EVERYTHING.  There is definitely a reason why they call it “practicing medicine”.  Nobody ever perfects it. I had to be the voice for Carter because if I didn’t speak up for him, then who would?

The toughest part about being a Special Needs mommy was feeling like I wasn’t making the right decisions for him. I guess that I have those feelings at time with my “typical” children, but it seems as though the decisions I had to make for Carter were much more profound.

My heart breaks that our family only got to spend fourteen months in the world of Special Needs.  Unfortunately, our little guy was called to Heaven after his trachea collapsed while recovering from a routine surgery. Somehow I know that Carter completed his job while here on Earth.  He continues to change our lives, and the lives of many others to see that the world of Special Needs can be a wonderful, WONDERFUL place to live.  You just have to give it a chance.

If you are new to the World Of Special Needs, and would like to contact me, please feel free to email me at cartershope@gmail.com.  I hope that you will also consider sharing your story by clicking on the Submit My Story link at the top of this page.

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