Embracing Every Gift from Above

Learning that I was pregnant for my second child started a great adventure in our lives.The moment the doctor confirmed the results, the comparison procedure started. In my mind, there was not the anxiety and fear I felt the first time around and there was an air of confidence surrounding both my husband, Roman, and I. We had the thoughts and attitude that "We have already done this once, now we are pro's and this is going to be a piece of cake." The only thoughts that filled me were excitement. My daughter Kaira, now 3, was becoming more and more independent and I was anxious to be needed again.
As the end of my pregnancy neared we had no fearful thoughts of anything. Kaira was just as excited as we were about the new baby and we knew she was going to be a great big sister. The only feelings I had were the uncomfortable feelings that come with the third trimester. I found myself urging the baby to hurry, and now looking back it makes me feel guilty trying to rush it along. We had known Kaira's sex and chosen to let this baby surprise us. I had felt for a long time that the baby was a boy though and could not wait to see if Roman would get the son that he dreamed of so much.
On Thursday, September 14 2000, I was in labor and it was just two weeks early so I knew they would let me have the baby. At 10:00am I was in the hospital contracting 3 minutes apart and 6cm dilated when the baby's heart rate dropped. Two nurses, the midwife and the doctor rushed in and started repositioning me to get the heart rate stable. They kept a close monitor of the baby's heart rate and stated that if it did not improve they were going to take the baby by cesarean section. I was still quite calm considering my labor with Kaira progressed much the same way and she remained fine and I delivered naturally. They wanted to hurry the delivery along, so they ruptured my membranes, only to find that the baby had used the bathroom in the womb. They feared meconium aspiration and flushed around the baby. At 11:20 the baby's heart rate dropped very low and once again they all rushed into the room. The midwife checked my cervix and the baby was crowned. My husband was dressing in the infamous scrubs, and we were advised that a neonatologist was going to be present in the delivery room because of the meconium and that they were not going let the baby to cry. I pushed a total of two times and our son was born. The look on my husband's face when the midwife said "It's a boy" is something I will never forget as long as I live. His whole face smiled from ear to ear and I think I might have even seen a joyful tear. He leaned over and kissed me on the forehead as we waited to hear how Roman James Wesley Jr was doing.
I remember now that I was shaking and I didn't know why I couldn't stop. I didn't feel cold, I didn't lose that much blood. I didn't know what was going on, but I could not stop shaking. They covered me with heated blankets and it helped a little. We were listening to the doctors taking care of our son to see if there was any news. He came over to us wrapped up and I kissed him on the cheek and Roman held him. I was laughing because when the nurse reached to take JR back, Roman did not want to let him go. He did not look sick to us, he looked fine. He hadn't cried, but they said that they weren't going to let him cry. The nurse took him and said that he was going to the NICU (Neonatal Intensive Care Unit) for an evaluation. I was wheeled into the recovery room and Roman joined me soon after. We were both glowing in the fact that we now had the ideal family. Most families try for a long time to get a boy and a girl.
Knowing that I was going to be in recovery for a while, I tried to get some rest. Roman came in and said that the baby was not breathing like they wanted him to and that they had him in an oxy-tent. A few moments later the doctors came in and said that Baby Roman was not doing well, that the blood pressure in his lungs was not strong enough to pump oxygen throughout the rest of his body. They had him on blood pressure medicine to stabilize the pressure in his lungs and his heart. The chest xrays came back negative; there was no sign of aspiration and no sign of pneumonia. They told us that he was breathing assisted at 90% and he should be at 100%. They were going to watch him a little longer and if it did not increase, they were going to ventilate him.
They then told us that he had failed his strength test and that he was showing characteristic traits of Down syndrome. They explained to us that it could only be determined by a chromosome test and that it would take at least 7 days to know the results.
I remember feeling overwhelmed; not believing that it was happening to us. All that I wanted to do was see my son. Whenever you hear stories, the cliche pops into your head thinking it won't happen to anyone I know. Only later to find yourself in the middle of a bad dream; if only it were a dream, you could wake up. I listened to the sounds in the room around me and it was sheer happiness. The other mothers had their babies at their bedsides. All I could do is lay there in my bed and pray that I would get to see my baby soon and that he would be all right.
At least an hour passed before I could walk into the NICU and see my son. As I walked through the door and showed the nurse my armband, I still retained this sense of calm. I didn't know where it was coming from but that it was somehow guiding me. I stood at his bedside, which really was an infant crash cart, and I looked down at that feeble little body. He was surrounded by wires and had a plastic hood over his head. The doctor walked in the room and she came right to me and explained the current situation. I remembered listening but not hearing. She was talking but my thoughts could not leave that little body that just a few hours earlier had been so safe inside of me.
He looked so fragile and sick, I was afraid to touch him. I was afraid to talk too loudly. I was afraid of not knowing were this was going to lead us. The doctor asked us what his name was and my husband said, "Roman James Wesley, Jr." I remember feeling something that right now makes me feel very guilty. But I thought that my husband was a very proud man and that he was saving that name for his first son. I looked at the tiny baby on the cart and thought to myself that this baby may not be the football player that he dreams his son to be. I wondered if saying what was on my mind would be insulting or hurtful or wrong, but I said it anyway. I told my husband that I would understand if he wanted to name the baby something else and save the Junior for our next son. I cry now thinking I had such shallow feelings like that. That somehow in my mind I thought they same way that other children will think years from now, that Roman Jr. is different and isn't good enough. I hate that I was so blind and foolish even for a minute. Although he was just a few hours old and didn't know what I was thinking, I felt that I had betrayed him.
Roman and I went back to my room and talked. And he kept reassuring me that everything was going to be okay. I prayed and God gave me the sense of ease that HE had brought me this far and HE was not going to take my child from me now. We stayed out of the NICU for a couple of hours; they were doing some tests and it felt better if we were not in the room.
When we were called back into the room, things had gotten worse. As we walked through the door, we noticed a sign that said Low Stimulation Area. Please Talk in Low Voices and Do Not Let The Door Close Loudly. The nurse met us at the door and told us that Roman Jr was not breathing well enough in the oxy-tent and that they had to ventilate him. We were told that the ventilator was only assisting his breathing, not breathing for him. That they had to put two catheters in him, one for the medicine going in and one into a vein so that they could draw blood without having to keep sticking him. He was on antibiotics. Roman and I were told not to be surprised if his condition deteriorated in the night and that he would then have to be flown to the Neo Care Center in San Antonio. I sat there and looked into Roman's eyes. And for the first time in the 6 years we had known each other, saw fear. I stood up to say goodnight to my baby and was not prepared for what I saw. I was not allowed to touch him because he had become so agitated during the procedures that his breathing had become erratic. He looked lifeless; all of the tubes and monitors that were sticking out of his tiny body, yet he didn't move. Only the tiniest rise and fall of his chest, a sign that the ventilator was pumping oxygen into his lungs. The nurse saw my concern and explained that because of his agitation, he was heavily sedated, the equivalence of a medicine induced coma. It was then that I shed my first tear, but it did not stop at once. I cried like I had never cried before. The only thing I could think of was that they weren't even giving him a chance to fight. My son was too sick to fight on his own, man and medicine had to take over.
Roman led me down the hallway to my room and I felt sick. Not even once in the entire time I was pregnant, did I ever conceive this to be possible. That something so frightening would occur when I gave birth to this wonderful baby. I rose to say goodnight to Roman and found myself weeping uncontrollably. All that went through my mind was that I needed him to go home and give Kaira a kiss and hold her tight and tell her how much I love her.
As he walked down the hallway, I prepared myself for the feelings of lonliness that would accompany me throughout the night. I was not able to sleep and so came the dreaded task of informing my family back home in New York. I knew that at all costs I must keep the impression going that everything was going to be all right because they would already be worried about the baby; I didn't want any extra worry construed on me. I wanted everyone's focus and prayers to be on my helpless little child.
My first shock came when my father, a man who was raised in the church, but had never taken us to church and had never spoken about God or that such thoughts crossed his mind, said to me "Our prayers are with you right now." I was floored, I was not even aware that he prayed. Another reaction that surprised me was from my grandfather. Some time later when I talked to him he made me aware of the thoughts that crossed his mind at this time. He was thinking about our family and how we had always been fortunate with death. No one has ever been taken from us prematurely, we all lived into wonderful old ages; my great-grandfather and great aunt are both well into their 90s and fully functional in society. We have experienced death in close social groups, but nothing that has hit our family directly. It has started to seem too good to be true. It was almost as if we were somehow due for bad news. My Papa thought that this was the time, when we heard of my son's condition. He thought that he wasn't going to be the one that wasn't so lucky.
I walked into the NICU in the wee hours of the morning and looked at my son through a different set of eyes, eyes of hope. I realized that he may not be like typical children or typical adults. But isn't that what we have been fighting for all these years? To see people as people and not as a color, race, or handicap? I looked at my son with eyes of love, of a mother's love and I saw the most perfect little being that I ever could have imagined. Instead of his stillness scaring me, I found it as a sense of calm. He was at peace and regardless of the outcome, I knew that it was not my will but God's will that would determine the fate of Baby Roman. Allowing myself to realize that was difficult because it meant that I had a very limited role inthe next few days of my son's life. I had to step back and let the nurses, the doctors, and God handle my son. I am a very independant woman and to be in the situation of not being able to help him was not something I was used to dealing with.
There was another part of my life that was affected by this that will change the way I think about life forever. I am a planner and a control freak. Roman Jr in this life threatening situation was forcing me to live my life minute by minute. I found myself hoping and beliving in a positive outcome, but not daring to think where my life would be tomorrow or 6 hours from now.
We had made it though the night and there were many promising signs that his condition was improving. The doctor arrived that morning and received the night status report. She decided to remove the ventilator and to just leave him on the oxygen tubes into his nose. I remember feeling so proud of him and all fears I had the night before, about him not being able to fight on his own, were removed.
I had given birth to a fighter. He still had a long way to go, but somehow the battle had just gotten easier. His morning blood test showed an increase in white blood cells and they had heard a heart murmur. We were told that a murmur was quite common in babies and that it may be just a duct that isn't closed all the way. But because of the diagnosis of Down syndrome, they feared a heart defect and wanted to schedule a consult with a pediatric cardiologist. His color had improved, he did not have that grey tint to his skin that way there the day before. Then we were told that he had not yet gone to the bathroom. They were not jumping to any conclusions as it could just have been because of the sedative, but they were just preparing us for any unexpected problems.
The news flashes began to take their toll on me. With every bit of good news came two bits of bad news. The process went on like this for days. They tried to acclimatize him and he did not respond well; he could not hold his own body temperature, therefore causing him to be placed in an incubator. They wanted to start feeding him and he would not nipple, they had to put a gauvage into his stomach to feed him. He remained in the incubator until day 12 and on oxygen until day 13. On day 15 of Roman Jr's life, we were finally able to bring him home. I was never so excited in my life.
With him, came my new found appreciation for life, the wonder and excitment of having a special child in our home. One whose personal accomplishments in life would mean just a little more because of his limitations. In our minds, we hope that our son has been through the most difficult time of his life and that he will not be hindered by his limitations, but that he will surpass all of his goals. That he will enjoy the life given to him by God and that he will do something productive with that life. We want him to understand that he is an asset to our family and in no way a weakness, for he will make us all stronger. That he has a sister who has unconditional love for him, a father who is already proud of him, and a mother's love that will guide him through anything that steps into his life's path.
Many people have asked me if I was ever angry. Being a woman of God, I could not hide or help that feeling of why. Not necessarily the feeling of why did this happen to me. But that feeling of that all these women who bring children into this world that don't want them. They don't care for themselves during the prenatal period and they have healthy children that they throw away. I took care of myself, exercised, took my vitamins, went to my doctor appointments. And here I was facing something that seemed so unfair. It was then that I remembered the voice of one of Baby Roman's nurses told me, something that will echo through my ears forever, "You are blessed. God would only put a child like this into the hands of someone that can love him." Tears filled my eyes and my heart filled with truth. We were the perfect family for this child to be born into, a family full of love.
Of all the pain and fear and heartache that I have felt, I do have to admit that not ever through the situation did I feel that he was going to die. I was scared for him and I knew that God was at my side the whole time. I often refer to the poem The Footsteps in the Sand, I enjoy that poem. But until this time I had never felt the effects that God's love can have on your life. The first two days of my son's life, I felt like I was gliding through my life. I don't remember any of the steps that I took, as if my feet somehow never touched the ground. I know however that not once during that period did I ever feel that I was falling. There were angels with my son and they kept him company while his little body fought off the infection that threatened his life.
For that we thank the angels, we thank his nurses and doctors, we thank God and we thank all the parents of children with Down syndrome who have made the process of learning about our son's condition easier.

One night a man had a dream.
He dreamed he was walking along
the beach with the Lord.

Across the dark sky flashed scenes from his life.
For each scene, he noticed
two sets of footprints in the sand,
one beloning to him and the other to the Lord.

When the last scene of his life flashed before him,
he looked back at the footprints in the sand.
He noticed that many times along the path of his life
there was only one set of footprints.
He also noticed that it happened at the
very lowest and saddest times in his life.
This bothered him and he questioned the Lord about it.

"Lord, you said that once I decided to follow you,
you'd walk with me all the way.
But I have noticed that during the most
troublesome times in my life there is
only one set of footprints.
I don't understand why when I needed you most
you would leave me."

The Lord replied "My precious, precious child,
I love you and would never leave you.
During your times of trial and suffereing,
when you see only one set of footprints in the sand,
it was then that I carried you."

Trevor's Blessing

May 10, 2007
When me and my husband Jeff found out we were going to have another little one running around we were like wow pregnant? We really weren't trying but were very happy that we were having another little one so our oldest could have a brother or sister.

We were having some marital issues and Jeff just moved back in after being out of the home for a week. We had decided to work things out when we found out I was pregnant.

The pregnancy was very similar to my first, except with Trevor every once in a while I felt nauseated but only got sick one time. At my ultrasound appointment we were ecstatic to find out we were having another boy!

We asked the lady doing the ultrasound if she noticed anything out of the ordinary that would be of concern, since my brother just lost a baby in Oct of 2007. She informed us that the only thing she noticed was an enlarged kidney but when I spoke with the Dr. he reassured me that this is common among boys and to not worry about it. The Dr. after the ultrasound informed me that things looked great and everything was developing great.

During the pregnancy I was diagnosed with gestational diabetes, and had to go on a calorie diet. Other than that there was minimal problems.

Trevor was born 2wks early due to the Dr. doing an ultrasound and having a concern of him being 9lbs. We also induced with Zach since he was also big. So the next day we went in to have our little angel.

The delivery went normal and I actually was not in labor as long as I was with our oldest Zach. He was not 9lb but 8lbs 4 oz. When the Dr. handed me Trevor and I first looked at him his eyes looked different to me, but I just blew it off, thinking heck he was just born.

We were in the hospital 3 days and the pediatrician had seen him and everything was fine no problems reported. I had Trevor in my room the whole time we were in the hospital.

As we were leaving the hospital on the third day our pediatrician at the time informed us that she had concerns that he may have Down Syndrome. She pointed out the characteristics of him having extra skin on the ear, his pinkie was smaller and his slanted eyes. At this time I was taking it all in and did not say anything to her. She stated that she was going to have lab come and draw blood to have him tested, and was going to have his thyroid checked and his hearing. Of course she informed me all of this when my husband was out of the room!

So when she left I broke down and was like not my baby. The nurses stated that they did not see any characteristics of DS in my little boy. I was calmed down, but until I received the report of whether he did have DS I was always looking and worrying.

At my f/up appt with the pediatrician I asked her how long it would take for the tests to come back as to whether he had DS or not. She said did you want me to have lab come and draw blood to determine if he does indeed have DS. At this point I was spitting FIRE!

I said to her, "I thought you said in the hospital you were going to have lab come and draw blood?" What was done to my son when he was taken from my room? Her response, "I thought we decided that since you said he looked so much like his brother we were going to wait a few months for him to fill out to see if there were any more distinct characteristics."

She reported that he was taken to have his throid/hearing checked and this was all. Also at this appt we found out our Trevor was jaundice and his levels were low so we had to have him in a billirubin blanket for 3 days. His jaundice improved but to say the least we FIRED our pediatrician and located another one after the tests were ordered.

We did not get the test results back until Trevor was a month old.

When I went to the lab to pick up the results I just looked at it and said to myself I don't know what this means, when in actuality I knew what it said, but did not want to accept it. I was thinking, "Not my angel".

When I got home I informed Jeff that I think our son has DS and I lost it. Me and my Hubby cried together. I had tried looking at things online, but it only made me more upset so I stopped reading.

Speaking with family members/friends really helped me realize that things were going to be okay and we were trully blessed to have him in our lives. When I spoke with my brother who lost a baby with DS in Oct 2007, just a few months before, I informed him that God obviously wanted us to have a DS child in our family because he was unable to save his little Cody but he created Trevor so Cody could live also inside of him. We made them Trevor's god parents and they were ecstatic.

After getting the results of Trevor's diagnosis we were really upset, but when I woke up the next day I informed Jeff that we truly are blessed to have this precious gift given to us. Trevor has had no health issues/medical concerns associated with the DS. He is a healthy happy almost 8 mo old who is a joy to everyone he meets! His brother Zach loves him to death! He is developmentally on target for all areas and we as his parents are going to be the strongest advocates for him throughout his life. We don't know what we would do without him in our lives and he truly is OUR ANGEL.

Acceptance and Love

I knew when I was pregnant with Gavin that he had DS. Those days I think were one of the hardest times, I knew I wanted him and I loved him but mourning my perfect child made my heart break each time. Going to research and speaking with parents with children with DS as much as I tried to keep it together I was in pieces inside. I just wanted the best for him and I would do what I needed to to give him that. When he was born and for the first six months of his life he was in and out of the hospital I didn't feel sorry for me for the lack of sleep or for the anxiety and so forth. I felt sorry for my son because he had to get the multiple lab draws, CT scan, barium swallows, medications, breathing treatments, IV sticks and so forth. He was the fighter my little 5 lbs. little man and with that I learned that life was too short and to appreciate every moment we had with him and to me the DS became secondary he was my son before anything else. I'm happy to say that he is pretty healthy now (knock on wood).
I was in the car with my husband and Gavin, Gavin in his car seat playing making sounds and I just started to laugh and I look at him and I love him with every being of me. It's funny because the DS is so secondary in my thoughts we still go to his therapies weekly and go to functions for the organization. I read a sentence once and I never really got it until now that said something like, "Down Syndrome is a condition your child has it's not who your child is."

Lifes Curves.....

I remember watching the look on my husband and our doctors face when I had my first 2 contractions and hearing Chases heart beat on the monitor slowly stop. The next thing I know a nurse was riding on the bed with me and my bed was push though OR doors. I was screaming and crying for my husband. The last words I heard just before I was put to sleep was my doctor telling me Rose it will be okay but I have to get the baby out now and I felt myself drift into darkness.
A few hours later I awoke to my friend and Doctor holding my hand sitting next to me telling me that my son was in the NICU. He was doing good and weighed 3 lbs 5 oz. I could hear in his voice there was something else but he was not going to say or maybe it was just relief that both the baby and I had made it and he was just so grateful.
I felt my prayer had been answered and my baby was going to be health. After all that is all I asked for when I was caring him inside of me. I knew what the risks where when I found out we were going to be blessed with our little surprise. I was 40 and I asked about the risk of my child having Down syndrome . We even went for the Amnio test at 16 weeks and both times that we went there was always something that prevented us from having it done. My doctor being the wise man he is and having known me since I was the age of 12, asked me what I would do if the baby had Down syndrome? I told him “We would do nothing”. As we left the doctors office to my horror my husband said “I am not sure I could handle a child with Down syndrome, look at the kids Charlotte takes care of .“ My husbands sister has been doing respites care for many years and most of the children who come to her home are in wheelchairs and have sever disabilities. I think that he was scared. For the rest of my pregnancy his words replayed in my mind, I thought I knew him better. We never talked about it again.
After going to my room I begged the nurses to please take me to see my son. I had an overwhelming feeling he needed me, my soul ached to hold him and make him my own. As I stepped out of the wheelchair ever so slowly and peered into the bed Chase was in I could barely see his small frame. He had more IVs and tubes coming out of his tiny body than I could count. He was on C-pap to help him breath. As I bent down to give him a kiss I noticed it. In his eyes, the slightest upward slat . My son has Down syndrome I thought to myself. When I got my lips close to his warm cheek and could smell the scent of heaven on his skin, I whispered to him “ you are my angel and I will love you with all of my heart, you are the baby I have carried in my heart little one”
We where asked to leave as the doctors wanted more time with him. A few hours later while Dusty went home to check on the other children, our doctor came in and sat on my bed, took my hands in his. He then asked me where my husband was, I told him and he wanted me to call him. I looked into this mans eyes who had stayed all night with me and my son caring for us and said “ Chase has Down syndrome doesn't he? He looked at me with surprise and said we are pretty sure he does, and he also has a heart defect that will need to be repaired when he is older.” I thought WHAT, I never expected this. My prayers where not answered as a matter of fact. I felt I was just slapped in the face and everything I believed in was a lie. Then I went numb as I thought how am I going to tell my husband and Chases 5 brother and 3 sisters.
My doctor stayed with me until Dusty came back to the hospital. My doctor told me something that helped to give me strength that morning and helped to bring a ray of hope and light to me. He said though his own tears “ You are a great mother and this little boy came to the right home, of anyone I have ever known you can do this.”
When Dusty arrived back to my room I told him and we had a good cry, then arm in arm supporting each other we went to the NICU where we got to hold our son for the first time and Chase became Daddy's little boy. Dusty never missed one visiting day out of the 5 weeks Chase was in the NICU, he got up early to take breast milk to his little boy every morning. He told me on our way to see Chase one night that he was sorry for ever thinking he could not handle it if Chase was born with Down syndrome, I held his hand tight and said “I know and I love you too”.
Chase had his Open Heart Surgery when he was 5 1/12 months old and he is the star of our large family. Cody said it best a couple of days after we brought Chase home from the NICU he looked deep into his tiny brothers eyes and said simply “ What took you so long to get here, I told you I would be here waiting”. I don't worry about the things I can't control and I know Chase will always have someone to love and help him and care for him even after we are gone. He has 8 other siblings who are his best advocates and love him.
Chase has shown are family how to come together in things we believe in and brought our family closer than it was before. Every child born to us is just as special as the other and just because Chase has Down syndrome it doesn't make him special, he just is.

Chase is just about to turning 3 years old and is just as wild and interested in everything as any other 3 year old. He is healthy!
I have made my peace with God and I do see things in a different light than I did 3 years ago.

The Lord gave me what I prayed for, I have a healthy son, it just took some work on my part to get him to the point of good health.

It was my cross to bare, no one else's and has gave me a new way of thinking when it comes to faith. Faith is sometimes the only thing we have to help us bare life's curves and we become stronger. Being a parent of a child with any kind of disability is not for the weak of heart, small of voice, short of temper, or understand the word no. That is just who we are.

My prayers are answered everyday I have with my now healthy son and I know I am blessed.

She Brought Happiness

Mina.....the most unexpected and most appreciated gift of my life . Her middle name is Ahyoka, which is Cherokee for "She Brought Happiness." Little did I know how perfect that name was going to be. But it wasn't like that the day she was born. That day was a day of fear, uncertainty, and sadness because she did not fit the image of what a child "should" be. In fact, she was born with the exact disability my husband and I feared the most....Down Syndrome. I cannot speak for my husband, but I had never felt comfortable around the mentally disabled, so this was the ultimate test of my ability to love unconditionally.When I became pregnant, I knew I would never terminate my pregnancy, so I did not have the testing done to check for chromosomal abnormalities. The only test we did do was a second level ultrasound to check the gender, and it indicated one weak marker for DS, a calcium deposit on the heart. That put our chances at 1 in 145. The doctor also checked the length of the nasal bone to check for a shorter one, which would indicate DS as well, but it was normal. We went home that day with a clean bill of health, so we thought, newly appreciative of the girl we found out we were going to have (my husband was hoping for a boy at the time.) Boy were we surprised when soon after the delivery we discovered that not only were we having a girl, we were having a girl with Down Syndrome. I wish I knew then what I knew now, because I would not have gone through the absolute despair I felt at having a child with this disability.
After spending the last two years of my life with this child, I've discovered that she is nothing like the stereotypes in my mind, and she is a "real" child, which I embarrassingly admit I thought she was not going to be. She is so normal it's ridiculous! Mina chases the cats and grabs their tails, laughs at us when we dance silly, throws a fit when she can't watch Barney and loves to jam out to music! She loves to pop bubbles, eat chocolate doughnut holes, car rides (she signs 'more' when we pause in traffic!,) and has mastered the art of stalling bedtime. I'd say that is a very normal, typical American child if I do say so myself.
And yes, she does have therapy, and yes, she does take longer to do some things than kids without DS, but I would not trade a thing even if I could. She is our joy, and frankly, for us, it has now become Mina's world....We're just priviledged to be in it!

Charm, Not Flaws

Aiden is, well.... Aiden is Aiden.

It has been 10 months since Aiden came into my life. He was 41 days early and have very significant heart defects. Since then, he has battled a heart surgery that he was given only a 3% chance to survive, complications from his heart surgery that landed him in the hospital for 5.5 weeks. Another complication from the heart surgery that landed him in another hospital for a month. He sees more "ists" than I thought possible for someone his age. However, it just goes to show how strong he is and that his name is appropriate. Aiden means "fire".

Many people comment on how strong I am. I'm not strong, I just do what I am supposed to do as a mom. There are other trisomies that are harder to deal with than Down syndrome. And when I came to the realization that we both "have" Down syndrome, it was a lot easier to swallow. Yes, I said WE have Down syndrome. It isn't something that is going to go away. Aiden will always be in my care. I go to all the doctor appointments with him and when he is admitted, I get admitted as well.

As a 10 month old, Aiden does things a little slower than most. He was 9 months old when he held his head up for the first time without support. He has just learned to sit with support. Those are things every baby does at some point. No baby does things on the same time line as the next. His foot goes into his mouth, thankfully not at the same time is thumb does. He rolls around on the floor to get to his toys that have been placed strategically around the room. When his therapists come to the house, he acts like he hasn't learned anything. It's like he knows the more he shows them, the more they make him do.

Everyone who meets Aiden, falls in love with his smile and his bright blue eyes. He charms nurses and therapists. He has more people wrapped around his little pinkie than he knows what to do with. He loves to hold hands and gives kisses and hugs to anyone holding him. He will sing to you when he is tired but doesn't want to go to sleep.

It has been one year since we got the diagnosis. Yes, Aiden has Down syndrome. But that mutant gene isn't a flaw, it is part of his charm. And I wouldn't change that charm for anything in the world. I always thought that it was a parents job to teach their children. However, I have learned more from Aiden than I ever imagined.

Stephanie, Aiden and family live in northeast Oklahoma. Aiden's favourite past times are watching Lilo and Stitch, singing with the radio, and amazing everyone on a daily basis with his new "tricks". Aiden was born with an atrial-ventricular canal defect, tetralogy of fallot, and hypo-plastic right ventricle.

The Birth of Addison

Well, we had been unofficially trying to get pg over a year and a half. I say unofficially because we never had a talk or announced we were trying.....we just stopped being safe. We found out at the end of Oct. That was approx 2 months pg. WOOO HOOO!!! I had your mild morning sickness....your unordinary cravings...and the tiredness...but in all, it was the perfect pregnancy.
My due date was June 13th.......Friday the 13th....Not superstitious...but who wants to deliver on Friday the 13??? Well a week prior my doc says "You're ready- you'll have him this weekend...if you don't do you want to set a date?" UHHH NO...I WANTED TO GO INTO LABOR (DUMB!) So I said I would wait---His exact words is "You'll never make it til Friday"......GUESS WHAT?! YEP! I MADE IT- NO BABY!....So we set up an induction for Tues the 17th.
We show up ready to have a baby. The pregnancy was so great I was waiting for the other shoe to drop...I figured I would have a 2 day painful labor... or something.
I got all hooked up to the monitor and i.v. & all...Then the nurse goes to her desk and Jamey goes out for a cig... All of a sudden, the nurse flies back in and turns me this way and that....Poor woman was scared to death! Finally the heart beat goes back up... She decided to wait on the Pitocin until the doc gets there...2 hrs later, he shows up!... Looks at the paper.. "Oh everything is looking good. I'm going to break your water now." Then discovers I don't have any!! Here we go -- amnio-infusion!! That's why the baby's numbers were off , he was laying on the cord!!
Alright, time for an epidural!! YEAYAH!!! MY NEW BEST FRIEND!!! At 11:00 I start pushing...The best moment for me was when Jamey looked down and asked the nurse "Was that the head?" He excitedly starts telling me to push!! LOL!!
The doc shows back up about 1. About 1:25, he puts the suction cup on my child's head and rips him out of me! I can see he is purple... that's ok... that happens, I read.I hold by breath - then he cries. WHEW! That's a relief ....OR WAS IT? The nurse wants to take him to the nursery. I said, "Well, can I at least see him?" So she turns around briefly at the door... then takes my baby away.
We know something isn't right. After an eternity passes, a pediatrician finally comes in. He said he color just is not coming.. we suspect it is a hart or lung defect. We also suspect it is from a syndrome (At that second in my mind, I say NOT DOWNS). A SPLIT SECOND LATER MY THOUGHTS WERE NOW MY REALITY.
He had to be transferred to the Children's Medical Center. I sent my hubby w/ him shortly afterwards. My sis worked a couple minutes from the hospital, so she came and stayed with me. We has sooo little hope -- until Jamey called me from the hospital. Their doctors had high hopes of him making it. They thought he would need a heart/lung bypass ---AND HE DIDN'T! He was in the NICU for 18 days. He came home on the 4th of July.... HOW APPROPRIATE!!!
I have shed MANY MANY MANY MANY MANY tears over my dear, sweet Addison. I have had normal, natural, uncontrollable reactions to circumstances beyond my control. Today if I had to do it over again, I would. I cannot imagine a world without him in it. After an experience like that, I decided I didn't want to chance going through that again... but I also said I wanted to keep things as normal as possible. I had always wanted to children... I didn't want the "what ifs" to rule my life. So we did.. another boy! 21 months apart!
My first born is nearly 4. My how time flies by when you slow down! He is thriving! He does learn somethings a little slower, but he is learning. and teaching me more about who I am and want to become! I tell ya what, nothing in this world has ever tested my spirituality like his birth. I never stopped believing - I was just FURIOUS!!! HE sent in HIS cavalry!! I don't think there was another baby there that was prayed around like Addison was. he is truly a gift straight from God!!!