Mrs. Phyllis Jones
Rural Route 1
Box 138
Keytesville, MO 65261

Dear Phyllis

Thank you so much for writing to me via the Internet. I am typing you this letter instead of handwriting, because I want to cram as much stuff in about Noah and our family as I can without making it seem like a novel!!

I'll start at the beginning and I hope I don't bore you too much, but it's just nice to write everything down for others to read sometimes. . . . . . . it's my therapy. My husband and I got married in 1988 and immediately wanted a family. We tried unsuccessfully for 4 years. My OB/GYN doctor at the time kept having me try this and that, did minor procedures and came up with nothing and told me to relax and keep trying. I decided to see a fertility specialist and within 1 month I was in surgery and was found to have advanced endometriosis, something my GYN doctor never suspected. Needless to say, he is not, my GYN doctor any longer! After 6 months we still weren't pregnant, so we decided to go through Invitro Fertilization (IVF). The first attempt failed. The second attempt failed. On the third try we were pregnant with twins. I was thrilled. I wanted to tell the world, but I didn't. I told those close to me, but was afraid that if I got too happy or told too many people something bad would happen. I don't think that I was confident that this was truly happening and that everything would be all right until the day I delivered. Peyton Olivia Weikert 6 lbs, 4oz, and Sophie Alexis Weikert, 4 lbs 6 oz were delivered on December 29, 1993. I was so excited. I had everything I had always wanted . . . . . a family of my own!

It wasn't until January of 1998 that I started thinking about babies again. My sister was due in June of that year and it started the baby wanting process all over again for me. I really wanted 1 more baby, but didn't know how possible it would be unless we went through IVF again. We had different insurance now and they would not cover any of the costs of this procedure. My husband and I had been pretty careful in the past 5 years, always using protection. I didn't feel that I could get pregnant on my own, but my new GYN doctor kept telling me that it WAS possible. We started trying in January of 1998 and in March I was wondering why my period was 2 weeks late. It wasn't until I was standing in line at the drug store that I glanced over and saw pregnancy test kits on the shelf. I had never bought one in my entire life. I had never been 1 day late in my life and I was now 2 weeks late!!! What was I thinking? Didn't I realize I could be pregnant? I started sweating. I ran over and grabbed the test kit and put it on the counter. I felt like a 16 year old girl doing something so secretive. I wondered if anyone was watching. My twins and I went out of the drug store and headed for Kmart to do some shopping. I could not get to the bathroom fast enough. . My twins were in the stall with me and one of them yelled loudly " Mommy why are you peeing on that stick. My heart was racing. The stick immediately showed 2 lines. . . . a positive result! I thought I was going to faint. I had totally forgotten why I came into Kmart in the first place. I felt like going through the entire store and showing everyone my little stick. I had never been more excited in my life.

The excitement lasted less than 2 months. In my 7th week of pregnancy I started bleeding. Each day I prayed that the bleeding would stop. It didn't. It only got worse. I started having cramping and was at home with my girls alone. I drove 45 minutes to my GYN office and they sent me to do a sonogram. I could barely walk. My husband met me at the office and we all went together. On May 21, 1998 just as I was preparing to have this sonogram done, I lost my baby. I saw the whole thing. I saw a little cord; a little kidney shaped piece of tissue, dark spots for the eyes and everything.

I was so devastated. I had to go out in that waiting room and tell, not only my husband that I lost our little baby, but also tell those precious little girls who, by now, were so excited to get a baby brother or sister. It was horrible. I came out of the office to see a waiting room full of pregnant people. My husband looked at me and I kept walking until I got outside. I felt like I couldn't stand it, like I wanted to just run away from this, but it was following me wherever I went. We all sat outside that building and cried for the longest time. I didn't care who saw us. This was the saddest moment of my life.

The weeks and months that followed that miscarriage were horrible. To this day I still think about it. I can barely get through the theme song by Celine Dion from the movie " Titanic, the words " every night in my dreams, I see you, I feel you, that is how I know you go on, and " near, far, wherever you are, I believe that the heart does go on. It just kills me. I am crying now just thinking about it. Those weeks following the miscarriage were so very hard on my girls as well, especially Peyton. She is the emotional of the two, just like her mommy. Some of the questions that they asked me were almost too much for me to handle. I was trying to heal myself, but also had to be strong to heal their hearts as well. They asked me if I saw the baby, and if the baby cried, and if I held the baby and where the baby was now. This lasted for months. In August, 3 months after the miscarriage, we decided to try again. I immediately got pregnant. This time, I didn't allow myself to get so excited. I didn't tell my girls until way after that 7th week mark. At Halloween I was getting my girls dressed in their costumes and I told them I had a secret. Peyton immediately said, " your going to have a baby. Sophie said, " you're getting us a kitten. Peyton was right. Sophie was wrong. Sophie was so sad that she wasn't getting a kitten!! Peyton had known for a long time and didn't say anything. I thought that was so sweet for a little 4 year old to keep such thoughts in her head without saying anything.

I never had 1 green day with Peyton and Sophie. I was green until the 14th week of this pregnancy and was sure that it was a little boy. I thought that all that testosterone in there was making me sick. In my 18th week, the sonogram revealed what I had suspected, a little boy. We were so thrilled. My husband Denny has 4 daughters, 2 from a previous marriage, Sarah age 16, Becky age 13 and Peyton and Sophie. This would be his first boy!! He was thrilled. After the initial morning sickness went away, the rest of the pregnancy went extremely well. Every sonogram that I had was completely normal, with no indication of possible complications at all. The baby was kicking so hard that, at times, I thought he would kick right through my stomach. I was 35 years old at the time and they wanted to do the triple test, which can help detect Down Syndrome. It is just a blood test, so at first I was going to have it done, but the nurse said that sometimes a false positive comes back and then they would require an amniocentesis. I then decided not to have the test done. By the time the amniocentesis report came back, I would be about 20-22 weeks pregnant. What would I do then, have an abortion. I don't think so. Noah's heart beat was always so strong when they listened to it in the office and all of the sonograms seemed normal, so I really felt that if this baby did have Down Syndrome, at least he was going to be healthy. But I must say that I really didn't feel that he would have it. I feel, now, that if I knew at this stage of my pregnancy that I was having a baby with Down Syndrome, I would have pictured the worst. Never in a million years would I have pictured the sweet little angel that I have been given. Not only that, I would have probably been so upset and would have read all this material about some of the possible complications that Down Syndrome children have, and would have convinced myself that Noah was going to have all of them. I probably would have lost him due to having a nervous break down. I am glad I didn't find out.

Noah Seth was born on May 16, 1999 at 38 weeks gestation. He weighed 7 lbs, 11 oz and was 20 \'bc " long. He was absolutely beautiful. He had meconium present at birth so my OB doctor said that when his head popped out that she would have to aspirate his throat and nose before I could push him out. I will never forget her words. She said " this baby is going to be a good little nurser for you because he is just sucking my finger like crazy. She was right. Immediately after he was born he started nursing. He nursed so hard that I thought my breasts would rupture!!! He had such a strong suck. He was so very beautiful. He had so much black hair that stood straight up on his head. Everyone in the hospital came by to see the baby with all the hair.

It wasn't until the next morning that one of the doctors who had helped in the delivery room came in. She walked over to me while I was eating breakfast and said, " we are going to have Noah tested for Down Syndrome. I almost threw up. I asked her why. Noah looked completely normal to me. Wouldn't I have recognized the symptoms? She said that his eyes were a little slanted and that the tops of his ears folded just slightly and that these were the only signs he had. From the neck down , she said there were no clinical signs and she was 95% sure he probably didn't have it, but they needed to test before I left the hospital to be sure. Immediately I remembered that Peyton and Sophie had folded ears, like my dad. Noah looked so much like Denny, and when Denny was small his eyes were a little slanted. This could not be happening to us. Why had she waited so long to come in and tell me. I immediately called Denny and my mom and they came right in. A genetic doctor came in named Dr. Rosenbaum (a doctor I hope I never run into again in my life, I'll tell you about him later) and said that he did suspect Down Syndrome and took us into the Chapel to talk. I started to panic. I started crying uncontrollably. The hospital moved me into a private room that they keep available for situations like this. Our whole family came to see the baby and I was such an emotional wreck. I just kept Noah in my room as much as I could. I didn't sleep or eat anything, I felt too sick. He was so precious. How could he have Down Syndrome. This was so unfair. I would try to sleep and then wake up and pray that it had been a dream. At this point I knew that I loved this baby so much already and I wasn't sure how healthy he really was, whether he had any heart problems or not. I remember saying to my mom that I loved him so much right now, and by the time I really get to know him and love him the most of all, I'm afraid God will take him away from me. I remember her saying " You will love him for as long as you have him.

Through this entire thing my husband Denny never batted an eye. You would have thought that the doctor told him that Noah had a hangnail. To this day he has never shed 1 tear over this. His whole attitude is that God has given us this child for a reason. He loves Noah so much. I can tell when he looks at Noah that this is a " differentkind of love; a love that he has never felt before. I cried for the rest of my hospital stay. My mom stayed with me and Denny took the girls home. Peyton and Sophie knew I was upset, but didn't say a word. All they knew was that they had a beautiful baby brother who was here and looked healthy to them. This would be the next step. Noah seemed to be healthy, but like Logan, they found a valve that was open in his heart and a small hole. We would go in 1 month to see if the valve had closed or not.

After 2 weeks of crying, I decided to concentrate on my little Noah. I started reading and reading. I read all about the things that Down Syndrome babies do and don't do. I read about all the signs and symptoms. I was amazed that he was so strong. All of the babies I read about had low muscle tone, and would not nurse and didn't gain weight. He was nursing every 2 hours, day and night. He had the strongest kick ever. He pinched so hard that I had pinch marks up my arms. He rolled over by himself at 7 weeks and to me seemed perfectly normal. Where were the Down Syndrome signs?

At 4 weeks we took him back to the cardiologist and had another echo done. GOOD NEWS!!! The valve was closed. The cardiologist was so excited. He said that it is rare for him to discharge a patient so soon, but he thought that Noah only had to come back one more time in 6 months to see if the small hole had closed or not and if it didn't it was no big deal. He explained that 25% of all people are walking around with this same condition and that it is not serious.

At 5 weeks, after I had stopped crying and was now totally happy with my healthy little angel and all the milestones he had accomplished, the genetic doctor, Dr. Rosenthal, called me to confirm his diagnosis. He said that Noah did, indeed, have Down Syndrome. At the time, I did not ask what type he had and I still don't know. I asked Dr. Rosenbaum if there were different degrees of severity with Down Syndrome children and he said that there were. I told him that the cardiologist found that his heart was fine, and that the pediatricians at our doctor's office were often surprised at his accomplishments. I told him that he was in the 50% range on the " normal growth chartat his doctor's office. He was rolling over, his hearing was fine, he was alert and aware of mommy and daddy's voice, he didn't have all of the typical signs and symptoms like the low ears, the single crease in the hand, clubbed feet or the large soft spot on the head. I was so happy to tell him of all of Noah's accomplishments. Do you know what this doctor had to say to me? He said, " this is all good, but don't get your hopes up too high, for when he has a downfall you don't want to fall too far to the ground. I stood there with my mouth hanging open. I could not believe this guy. I mean, I know that there might be times that he will need some help, I am not stupid. But doesn't that include all children? What am I supposed to do, sit around and worry about all of their downfalls that they might have in the future and ignore all of the good things that are happening now? I don't think so. He should have said " these things are all wonderful, but keep in mind that it might not always be this way, he may have some downfalls. I would have felt much better, but since he said it the way he did, I cried for 2 more weeks. I got totally depressed again. It took me awhile to get out of it this time and I have to admit that sometimes I still cry for the Noah that could have been. I remember when I brought him home from the hospital; I took him in to change his clothes and felt as though I was putting another baby's clothes on him. The clothes that I had bought were for the Noah that I thought I was going to bring home and this wasn't that baby. I felt so guilty having these thoughts. At the time I was also feeling guilty about all the time I was spending with Noah, and felt like I was ignoring my girls. Peyton and Sophie had been mommy's only focus for so long, and they had received all of my attention for 5 years. Now this new baby comes along and needs me more than I had expected. I just felt like they were being pushed aside, and I could tell that they were starved for attention. I still feel guilty that I don't get to spend as much time with them. This is absolutely one of the hardest parts about being a parent. . . . . . dividing your time equally. Peyton and Sophie love their brother though. They call him their little " honey bunor " special angel. They will be good for him. He will learn a lot from his sisters

My biggest fear is that people will make fun of Noah. To me, it doesn't matter if he isn't as smart as the other kids or that he needs help in doing something, or that he won't be on the football team at school. These things can be easily overlooked, much less than when a child looks noticeably different. I don't want to be following him around all the time wanting to beat up everyone that picks on him. I was recently in Walmart and this older guy with Down Syndrome was sitting on a bench. He was pretty bad with a lot of noticeable signs, and he had that typical " Down Syndromelook. I hate saying that, but it is true. A little girl, about 7 years old, was standing in between the clothes just staring at him. Her parents had walked up the aisle, but she couldn't take her eyes off of him. I started hyperventilating. I pictured Noah at this age and wondered if people were going to stare at him too. Sometimes it is more than I can take.

Noah is 5 months old now and I still catch myself crying a lot, but now I cry for a different reason. I cry because he is so beautiful and because I love him so much. I love Peyton and Sophie more than anything, but there is something about Noah that makes me feel different. I guess it's because I feel he needs me more. I never thought that I could feel this much love inside. He is truly a gift from God and I find myself actually feeling sorry for others who haven't felt this kind of love. To me he is so perfect.

Noah is doing really well. I really see no differences in the way he is developing compared to my twins. He had an evaluation with physical therapy at 3 months of age. They were all very impressed with his progress. They couldn't believe how vocal he was, using vowel sounds, cooing, and that he picked up toys by himself and transferred them from hand to hand. He was in the 4-6 month range in everything except for holding his head up, so he will be receiving a little therapy for this. I told the therapist that I feel it has a lot to do with me putting him on his back all the time. The hospital stressed to me that I should not put him on his tummy due to the risk of SIDS, so he spent the first 3 months lying flat on his back, with no need to lift his head. I decided to start putting him on his tummy and within 2 weeks he started lifting his head like crazy. The therapist agreed that this probably had a lot to do with it. She also said that probably all babies need a little bit of physical therapy, but are never diagnosed with anything so they never are evaluated. He is the little light of my life. He attracts so many people. He melts everyone's heart. I have not had 1 person come up to me and say, " oh your baby has Down Syndrome. This was my biggest fear. I dreaded taking him out at first for fear of these kinds of confrontations, but it has never happened. Another thing I hated is the " I'm so sorryresponse when I would tell people that he had Down Syndrome. I felt like saying, " why are you sorry, it's not like he died! I would get so mad. I guess people just don't know what to say. I can honestly say that I cried more and was sadder when I had my miscarriage than when I found out that Noah had Down Syndrome. I know in your letter on the Internet you mentioned you had a miscarriage also. It is such a loss and you come out of it feeling so empty inside. I don't know if this happens to you or not, but some days I look at him and I can't see it at all, and other days I think "boy he really looks like he has Down Syndrome today. It is so strange. He really does look like the rest of our family though. I noticed that Logan looks like his brothers and sister too. I also feel that the " Down Syndromelook has a lot to do with how a child is raised. I think that by putting them in institutions, not teaching them good hygiene, dressing them in mismatched clothing and not treating them like human beings makes them stand out more than ever. I believe that if you raise them like you do your other children, discipline them the same, dress them the same and make everything around them as normal as possible, that they will be accepted and fit in with the rest of the family. I totally look at the world with different eyes these days. The other day Peyton finally asked me this question, " Mommy, why did you cry in the hospital when Noah was born? I explained that Noah had Down Syndrome and that I didn't know how healthy he would be and I was scared. She asked me about Down Syndrome and I explained to her and Sophie that Noah might have a little trouble learning, but maybe not. I also explained that he might look a little different with his slanting eyes. They both looked at me and immediately said, " he's not different, he looks fine to us. If only the rest of the world could see through the eyes of a 5 year old. I think they were offended that I called him different!!!

Well, I wasn't planning on writing a novel, but it looks like it has turned out that way. I am enclosing a few pictures of Noah and our family for you. I would appreciate it if you would add it to Logan's list of friends for me. I'd love a recent picture of Logan to add to Noah's scrapbook. Below are the things that Noah likes and dislikes:

Noah likes:

1. to be tickled under his arms and back
2. Tweety Bird
3. to breast feed and play at the same time
4. to grab our hair (Peyton, Sophie and I have lost 1/3 of the hair on our heads due to him pulling it out
5. to be talked to
6. bath time, kicking water and sucking the water out of the wash cloth
7. sucking our lips as hard as he can to the point that you think your lip will split
8. snuggling
9. holding his left arm or left leg straight up in the air for about 10 minutes and staring at it - this is so funny to watch
10. his sisters; his little face lights up when he sees them
11. BEING NAKED!!!

Noah doesn't like:

1. for me to pick his nose and get it clean - he fake coughs every time
2. for me to pick his ears - he cries
3. cereal or second foods - he just wants milk
4. loud noises - when I raise my voice to correct the girls, or just when I yell for them across the house, he cries hysterically, we all have to use quiet voices around him
5. a big red stuffed animal that we got at Walmart - you push his hand and he giggles really loud - he gets quivery lipped and cries every time
6. blankets - he kicks them off all the time
7. the wind blowing in his face - it takes his breath and he gasps for air
8. strange people - he will often get quivery lipped and cry if someone strange tries to talk to him when he is not in the mood
9. being ignored - he feels that if you are in the same room, that you must pick him up!!!
10. having his nails clipped - he is in constant motion and won't sit still
11. having his hair pulled - he grabs chunks of his own hair and pulls it, then cries and looks at us like we did it!!

In closing this long letter, I would like to thank you for sharing your wonderful story and family with us. Writing this letter to you has been very helpful for me, and I know you will read it and relate to probably everything that I have said. I'd love to hear from you and keep in touch with you. Isn't it strange that if Noah or Logan would have been born " normal we would have never met? This truly is a blessing in disguise.

Sincerely,


Vonda Weikert