I'm glad you are here and I hope you enjoy our story. However this is just the BEGINNING of our journey. I wanted a place that new Mommies could share our journey and that wouldn't get buried in new posts, so I created Tarenne's Tales.

Please visit our family's current blog at:

The Beginning of Our Journey

My Story

Written for friends and family during my pregnancy with Tarenne

I guess God has been preparing me for this my whole life. He has always given me the ability to be comfortable around those who are different from myself. I always felt that one of the reasons He put me here was to combat racism specifically and prejudice in general. Funny, but the one group whom I never really felt an affinity with is people with mental disabilities. I am not sure why, I’ve never had a bad experience, but perhaps it is because I’ve never had experience period. I guess it is not so strange then that this is the biggest challenge He has ever put before me.

You see I wasn’t really ready to get pregnant again. I was still nursing Darrah my first born and most beloved daughter. I enjoyed our time alone, but still felt the stress of being a stay at home mom, living away from my family and dear friends. However Joe had other plans. Maybe because of our age, maybe because of his bad knees, whatever the reason, he was really ready as soon as Darrah entered this world. Being the compliant wife that I am (big laugh from those who know me), I decided to go along with his wish. We threw caution to the wind and after my first real cycle, post pregnancy, we made love without our version of safe sex. I really thought I was just making Joe feel good by giving in, after all it took us four months of precise planning and timing to conceive Darrah.

Knowing that Joe is spoiled and always gets his way, ~ tongue in cheek~ I should have known that that would be all it would take. Two weeks after our night of unprotected passion I started feeling that I was coming down with the flu. We were home for a wedding and I took a pregnancy test just to be sure. I am not the type to take any health risks when it comes to my kid, or kid to be. The test was negative, but since I wasn’t feeling tiptop I only had one glass of wine in celebration anyhow.

We returned to Rochester and I checked my calendar for dates. You know; when had my “real” cycle really been, when exactly was it that we weren’t so careful? Aha, I still wouldn’t be late yet, so I decided to wait and retest. Somehow I knew. We had tried so hard to conceive with Darrah, but each month I had felt the same as when I actually became pregnant. I never had morning sickness or fatigue even. Maybe I just didn’t notice because I was living my life’s dream of becoming a mother. This time was different right from the start. Joe’s sister was visiting us and so I decided it would be neat to do the test while she was there so that she could share in our news. We were all overjoyed when on July 2, 1999 the test showed a definite positive result.

The nausea and fatigue I had already been feeling didn’t let up at all. I even gave in and started letting Darrah watch 2 hours of TV in the morning, something I had sworn never to do. Since this whole thing wasn’t my idea in the first place, I had to give Joe a hard time. I blamed my illness on him while I lay on the couch feeling pitiful for weeks. When I saw his alarm and concern I told him not to worry. I knew that this was God’s baby. Jeez, our timing couldn’t have been anymore precise, too precise for human planning. My first cycle, our first time throwing caution to the wind, it was too uncanny. So I started saying things like “this baby is probably going to annoy me its whole life. This is your child, yours and God’s, you will have to care for it”. Flippant and a little self-pitying, but these comments were made by me on more than one occasion.

When feeling good, I did say that I knew this baby was given to us for a definite reason. My reasons at the time were based around Darrah. I knew she was a little spoiled and a sibling would do her good. I also knew that a second child would mean Joe and I would have to pull together to care for them, and that would strengthen our marriage. In my heart I loved this baby from the start, it just wasn’t quite the same as the first time when I had so desperately wanted to become pregnant. I also had never been away from Darrah for more than two hours, and really needed some time for myself. This was a result of living away from family and Joe traveling a lot. My plan was to have her weaned and have my body to myself for at least 6 months before trying to conceive again. And yea, in my wildest dreams, maybe even a good vacation before expanding our family.

Knowing that I was lucky with my first pregnancy, and a bit unusual, I didn’t worry about the nausea or fatigue at all. I still felt lucky that I hadn’t had to vomit as a result of the wild hormonal changes your body undergoes. I did start to worry when I was confronted with Down syndrome time and time again. I never went looking for the information or people, they just found me. About twice a week something would come to my attention. It may have been an article in a magazine, a show on TV, an internet site, or that beautiful little boy that Darrah so enjoyed playing with at Barnes and Noble one day.

I had had a similar experience for about a week with my first pregnancy. At the time I just prayed for a healthy baby. I guess though that it never left me. A good friend I had made in Rochester recently told me that she remembers me telling her last fall that I thought someday that I would have a kid with Down syndrome. This time when I was bombarded and it continued for several weeks I started really praying hard and asking God what message He was trying to send me. A few years ago I discovered that the best way to pray is not to ask for what you want but ask for the strength to accept His will, because He knows what is best for your life. I trust that He sees the big picture, which I am blind to. So this time I just asked for strength. I felt an overwhelming presence telling me that this baby did have Down syndrome and that that was His will if we could and would accept. Not realizing at the time that it was really Him I was talking to, I said, as I have tried to do the few times in my life I felt I was hearing his voice, “yes God”.

I asked Joe’s sister to pray with me about this specifically. I told Joe my feelings, although I can’t remember with how much detail. After all, this is his child too, and I didn’t want to frighten him. I also know that he is aware that I tend to worry a lot about sometimes-silly things. I mentioned it to a few other friends in passing, always just asking for prayers for our precious baby.

Then for a week or two it left my mind. We went for the ultrasound and were joyful to find out I was carrying another little girl. I had always wanted more than one girl, and Joe is so smitten with Darrah and her incredible personality that “we’ll take two” seemed like a great thing to us. He had already agreed at the beginning of the pregnancy that we could have three children no matter what this one’s gender. We were both thrilled that Darrah would have that sister that I think is so essential to a woman’s life, after all I have four wonderful ones that I feel I couldn’t live without.

The day after the ultrasound I returned for my last doctor’s appointment in Rochester. I was sad because I was extremely crazy about my doctor there. She not only has a great bedside manner but specializes in high risk pregnancies as well. I always knew with her that I was in great hands. She came in and we took care of all of the normal things first. I had Darrah with me, which always makes a doctor’s appointment challenging. We listened to the great sound of a strong heartbeat, and doted on the fact that I would have “another smart little girl”. You see I have been very overly proud of Darrah’s obvious intelligence. Then she proceeded to go over the ultrasound results with me. She questioned my adamancy about our conception date because the baby was measuring about a week off. Then she told me that Tarenne had fluid in her kidneys and that we would want to request another ultrasound to monitor that. Her daughter had had the same thing. It just meant if it didn’t clear up Tarenne could be plagued with frequent urinary tract infections. But usually, she reassured me in her loving way, it clears up on it’s own in utero. She said that both of these things could be nothing.

Then she pulled out a chart. She continued on. She needed to let me know that these “things” together were also indicators of Down syndrome. She showed me on the chart, how my odds went from being one in 452 for a woman 33 years old, to one in 72 with these “things” factored in. She again reassured me that it was probably nothing, but she wanted me to be aware. I looked at her straight in the eyes and said “no, this baby has Down syndrome”. She asked what I meant and I told her about my feelings throughout the pregnancy. She told me that she is a big believer in women’s intuition and that if I wanted we could schedule an amnio. I asked her if she could do it in the next two days if Joe and I wanted it, as the moving truck was coming on Thursday. She assured me that she would fit me in.

I walked to the car thinking “no, I don’t need the amnio”. I knew the answer in my heart and didn’t want to put the baby at risk. By the time I got home I was very upset and honked for Joe to come outside to the car because Darrah had fallen asleep and we were on our way to playgroup. The rational side of me had also kicked in and knew that I would worry needlessly if that voice in my head was really my own. That was my hope. Joe gave me time to think it over and he did the same. I got on the internet that afternoon and learned that the risks of miscarriage due to an amnio are really directly related to the doctor’s skill. Also the risks of miscarriage looked pretty good, 1 in 300, to my odds of 1 in 72 for Down’s. I also knew that a lot of our family and friend’s wouldn’t accept the diagnosis on my conversation with God and would probably be more comfortable with a scientific diagnosis. Plus, if it really was God speaking, He would never let anything happen to His baby. And if Tarenne did have Down syndrome we would need to learn everything we could before hand to prepare for her arrival. I remembered reading about difficulties breast feeding a baby with Down’s and that would be very important to me. It is hard enough I’ve heard bringing the second one home when he/she doesn’t have special needs. I also realized that I couldn’t handle people’s well intentioned sympathy after the birth of our little girl. After all, we will still be having a precious baby. We had to think quick. We decided for both of our sakes, as well as our families that we would have it done.

I called Dr. Howitt’s office that day and scheduled the procedure to be done the next morning. The day before the moving company was coming to pack up our home that I so dearly loved. Shannon, a dear friend, agreed to forgo sleep (she works the night shift at the local hospital on the labor and delivery floor) and watch Darrah for us so that Joe and I could go alone. We were both thoughtful and hopeful on the way to the doctor’s office. The procedure went okay. It was refreshing seeing our baby again, looking just as healthy and precious as she did to us just two days before. I asked if they thought that it would be best for me to just close my eyes. Dr. Howitt said she thought I would be comforted watching the monitor to see that the baby was not near the needle. She informed me that I might feel cramping. Throughout the very short procedure she kept asking if I was okay. I would just nod my head and grunt an affirmation. When I saw really just how close the needle was to Tarenne, and how she reacted to it, looking at it and reaching up, I became quite upset. I wondered if we had made the right decision and was terrified of losing my little girl, because we wanted to be prepared for her. I silently cried. Dr. Howitt at that moment asked if I was cramping because she was losing fluid (not getting any to flow out into the tube). I realized that my tears and trembling stomach were the cause and just focused on God and the thought that He was in control of this from the beginning.

After the procedure I questioned her about the baby’s size. Everyone kept saying, of course she was small, she belonged to Joe and I after all. She and the ultrasound tech informed us that all babies are the same size up until I think it was 24 weeks, then genetics kick in. She asked me again about my firmness on the due date, and in the midst of our conversation I realized that I perhaps had counted my cycle wrong. When Joe and I got home I rushed to the calendar and recounted. YIPPEEE. July 2nd would have been almost 35 days, not 28 as I had insisted. So that night I was pretty high thinking perhaps the voice was an overworried pregnant version of my own.

The next week was difficult. We were not only moving from a city I had grown to love, with friends I knew I could count on, but we were waiting for the answer as well. The answer that would determine our future. In actuality, the waiting made moving easier. Leaving a city that really wasn’t home suddenly was in proper perspective when compared to the health of our daughter. Joe’s Dad and his wife Linda were coming to meet us in Lansing to help us get settled in our new home. What a blessing that was. Linda and I had gone to Target when Joe got the phone call. Upon our return he met me at the car, pulling me out of the drivers seat away from the car in a full embrace. He was crying and said “I’m so sorry.” “She does?” I asked, not sure if he had received THE phone call or if some other “tragedy” had befallen my family. “She does”, he replied. We hugged for a long moment. Then I asked if I could go be alone. I wasn’t crying yet, and I knew someone needed to take care of Darrah during this moment of intense revelation. I needed to process this by myself and I called one of my best friends who I shared my first pregnancy with and was yet again sharing our second. I knew she would know how this felt to me.

In the end I know no one can know how this feels to me. The utter joy in relishing the fact that God did indeed speak to me. That He treasures me enough and I trust Him enough to sometimes be included in the plan before it happens. To know that this baby is in fact His child. Not really the will of two parents desperately trying to conceive but the meticulous plan of the creator. That I am carrying a child who will appear to be flawed to the outside world, or at least to those that don’t know He is in charge and does not make mistakes. But I do know that. Those are the good feelings.

The bad feelings come fleetingly, and I thank God for that. But when they arrive, they do so with such force that it nearly knocks the wind out of me. Whether it be jealous feelings I get when looking at a healthy newborn. Or the medical establishment asking me if I plan to continue with this pregnancy. Would they be asking me that if she was blonde and blue eyed, thus unlike me? Or yesterday at the doctor’s office when I handed my paperwork in at the end of the appointment. The paperwork had Down syndrome marked all over it, a bitter piece of reality for me. The receptionist took it and loudly proclaimed “Oh my god”, while placing her head in her hands. Electrical shocks went through me and I calmly said “sorry to put you in a tailspin, it can’t be harder for you than it is for me”. I wasn’t quite sure what exactly her problem was, but was infuriated just the same. She yelled for the girl to come help her as she had to make SEVEN appointments for me. Okay, so she wasn’t being judgmental, but still a little compassion for me would have been nice.

I also sadly have realized what an anomaly Joe and I are. It seems that most couples opt to have the amnio done so that they can abort their “imperfect” pregnancy, not to prepare for their special child. 9 out of 10 preterm babies diagnosed with Down syndrome don’t get a chance to live. This happens even though there are over 100 families on a waiting list to adopt these exact kids. It seems that white America is the only ethnic group in which Down’s is decreasing. This sickens me. I don’t even know my baby yet in the world’s sense of the word. Yet I have seen her face, her heart, her hands and feet, and I have felt her move within me, more than I ever felt my “normal” child. I love her and feel protective of her more than I could have ever imagined.

If someone were to ask me what I would want for my children my answer would be quite simple. I want them to know God, to know happiness, to be loving and accepting of all individuals and to accomplish their own goals so that they can be proud of themselves and have self confidence. Tarenne will be able to achieve all of these things. And at the same time teach others how to accomplish these ideals for themselves. So please don’t feel sorry for me. I don’t.

Definitely a Baby

She reached out to grab the needle during the amnio. How can anyone say she was not a baby?

The Red Dishes

He Keeps Talking to Me!!

A few weeks ago I was having a bad day. Darrah was being unusually ornery and I just kept thinking "how does God think I can handle a child with special needs when I can't handle a "normal" one?".

My good friend Tracey called and we talked about our spiritual lives and she also encouraged me to get out alone that evening. So I started conversing with God and took Tracey's advice and went shopping alone.

On the way I was teary eyed, just generally feeling sorry for myself. I was feeling very alone in a new town, and just heavy hearted.

I stopped in Pier 1 first to look for red dishes to replace some of our cracked ones. I bought a few and then headed to Marshalls.

I saw a really cute man about our age and his adorable little boy who was about one year old. They were having a great time shopping together and I became jealous, a feeling I hear I should expect to happen fairly often for awhile. I was thinking poor me thoughts like "oh isn't that nice, he has a healthy kid, probably a beautiful wife and cute kids. Why can't we have another healthy baby".

I then continued my shopping heading back to the kids clothing section.The man crossed my path again, and I watched as he went over to his wife. I could only see her back and a cute little girl about 7 walking beside her cart.

She then swung the cart around and there sitting in the cart was another adorable little girl about 5 who had Down syndrome.

I started laughing and crying all at the same time, realizing that God was right there with me showing me that this man did indeed have the perfect family. The family that He wanted him to have. I got chills all over my body. As my high continued I thanked God and said "okay if it's really you, then give me some red dishes".

I was walking back to that section just to check. Now keep in mind that my dishes were one of my splurges while working at Toyota and I have never seen them anywhere other than Crate N Barrel and Spiegel catalogues. As I turned the corner to the aisle, there in front of me were four red dishes exactly like mine. Same brand, same color. Amazing! They were just the salad plates, which we really didn't need but I bought them anyway. He didn't want to spoil me. Again I laughed and thanked Him for being so present in our lives.

My father told my sister "well God didn't know those plates were going to be there". My answer to him was "if He can create the universe He can stock red plates at Marshalls knowing I'd be in there."

He is wonderful, we just need to really listen to Him when He tries to talk to us. Already Tarenne has given me the gift of drawing closer to His love because I need him so much. I can't wait to see what other blessings she will bring to our lives!

Our Birth Plan

Requests for Labor and Delivery-For Nicole M

Special circumstances: Our baby has Down syndrome-heart ultrasound revealed 90% chance of a healthy heart, no other known existing health problems, so the delivery should be uneventful for the baby.

We are doing the cord cell savings. Instructions for the nursing staff as well as the doctors will be provided upon arrival. Extra blood will need to be collected from me at admission.

I have tested positive for Strep B and will need to be given the appropriate antibiotics. I would appreciate having a heparin lock or any other technology which enables me to remain mobile.

I would like to have an electric double breast pump in the room, as babies w/Down syndrome often times have problems latching on. I would also appreciate a visit w/ a lactation consultant during my stay. Under NO circumstances should the baby be given water or formula. I would also like to try to nurse immediately at birth barring any medical problems for the baby or me.

I am going to attempt a natural birth, as I was not satisfied with my first delivery in which I had an epidural. Please do not offer me pain medication. My husband or I will ask for it if I change my mind. I will also be open to my doctor’s guidance along these lines. I would love to avoid an episiotomy and would appreciate any guidance or methods used to do so.

I would like to have a squat bar in the room. I have been advised that my first labor may have progressed more quickly had I changed positions. I would love to have reminders to try different positions at appropriate times.

With my first pregnancy, my placenta was manually extracted and a piece adhered. My previous doctor has advised me that I have a 40% chance of this happening again. I would appreciate being given the appropriate amount of time for it to deliver on it’s own. I also wanted my caregivers to be aware of this so that proper treatment could be given.

We have 2 sisters who are flying in for the delivery, and I would love it if they can both be in the room at the time of delivery. We would like to take photos and video as soon as we are able.

Most of all I want the nursing staff to know that we are overjoyed with our special blessing. We welcome any questions and/or visitors who are interested in our situation. We are aware that it is a rare occurrence for a couple to know ahead of time about their baby having Down syndrome. One of my best friends is a labor and delivery nurse and expressed to me that even after years of being in her profession, she has remained uncomfortable with these circumstances, until she has been through this journey with us. Please do not feel any hesitation to rejoice with us in our daughter’s new life. Thank you!

Welcome To Holland

2 of my best friends sent me a vase of tulips in honor of this poem at the hospital after Tarenne was born. It has become a tradition for our family to reach out to new families in the same way.
byEmily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved

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

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

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

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

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

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

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

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

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

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

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

Birth Announcement Note

We included the following note in Tarenne's birth announcements:

Dear friends and family,

As many of you know Tarenne was born with Down syndrome. We want to thank all of you who helped us with prayers and support during our pregnancy. We are so blessed that she is a very healthy little baby.

We want everyone to be comfortable enough to ask us questions. We have learned a lot in the past five months, but before we found out about Tarenne we didn’t know much about Down syndrome either. We are doing everything we can to provide her with the best start. That will only be possible with the love and understanding of our family and friends. So please don’t hesitate to ask us anything, or share information you have heard.

Tarenne’s name sounds like Karen, after Joe’s mother, and is spelled like Nicole’s maiden name Turenne. She is doing really well, except is having a hard time learning to eat because she is often very sleepy. But when she is awake, she is very alert and sweet. Everyone who has held her has been touched by this special angel- and she can’t even talk yet. We can’t wait for all of you to meet her.

Much love, Joe, Nicole, Darrah and Tarenne

The Down syndrome Creed

My face may be different, but my feelings the same,
I laugh, I cry, I take pride in my gains.
I was sent here among you to teach you to love,
As God in the heavens looks down from above.
To Him I'm no different, His love knows no bounds.
It's those here among you, in cities, and towns,
That judge me by standards that man has imparted.
But the family He's chosen will help me get started.
For I am one of His children, so special and few,
That came here to learn the same lessons as you.
That love is acceptance, it must come from the heart.
We all have the same purpose, though not from the start.
The Lord gave me my life to live and embrace,
And I'll do it as you do, just at my own pace.
~Author Unknown~

This was included on Tarenne’s birth announcement.

Breastfeeding Tarenne

The primary reason that my husband and I decided to find out prenatally, if indeed our daughter had Down syndrome, was to prepare. Out of all the things that we learned, it ended up that the only difficulty we had to deal with was feeding our baby. The simplest, most basic task became a battle for us and for her. I remember thinking that if we were doing this is the cave man days she would have perished, and my heart broke. I constantly asked God why we had to go through this struggle, and I never got an answer, however in the end He did answer our prayers and she learned to nurse at 14 weeks old.

I often wondered if I “cursed” myself by knowing too much, by even having the knowledge that this might be an issue. Upon birth she latched on and nursed like a champ for several minutes. That was one of the benefits of knowing her diagnosis beforehand; no one was able to steal those first precious moments of joy from us. We were able to dictate every move that the hospital staff made with a carefully written birth plan. She was immediately handed over to me and we established skin to skin contact as she suckled at my breast and received the ever so important colostrum that my body offered. We were off to a great start!

However over the next few feedings she refused to latch on. It was almost as if while her brain took over her basic instinct was lost. She was a very sleepy baby and it seemed as if that need for her was stronger than the need for nourishment. The lactation consultant came in to guide me at each feeding, even though I was currently still nursing a 22 month old toddler at home. My expertise quickly fell to insecurity as my attempts were met with failure for this special child of mine.

A hospital pump was brought into the room so that my body would be told to continue to produce milk even though my child refused to partake of it. A nurse came in with a 6 pack of sterile water bottles, and instructed me to fill those up as I pumped. I looked at her as if she was crazy, and told her that no new mom would be capable of filling up the bottles and instructed her that your milk doesn’t come in for several days. Later the lactation consultant told me that she had implemented training sessions on pumping, so that no new mom would be discouraged by incorrect information given by the staff. That was to be Tarenne’s first influence in the world.

The lactation consultant also educated me about advocacy. I was exhausted and just wanted to go home after the 2nd day of hospitalization. However the hospital’s pediatrician refused to dismiss Tarenne until she had a bowel movement. The lactation consultant went head to head with her, trying to educate the doctor on bowel movements of breast fed babies. Tarenne’s tests had assured them that were no issues with her organs, and the lactation consultant said it wasn’t fair of them to treat her differently because she had Down syndrome. So quickly already I was learning the different standards my child would face. We finally agreed that they could give her a little bit of formula so that she would produce a bowel movement. This would be the only formula that would pass by our child’s lips.

With the lactation consultant’s help we decided that we would use the Hazelbaker finger feeder to get my pumped milk into Tarenne’s system. We wanted to mimic nursing as closely as possible, and this feeder would provide her with our touch, while we could use our finger to stroke her palate and promote the sucking response. We went home with a hospital grade pump and this special feeder.

Once I was home, Darrah my 22 month old, immediately wanted to nurse, after 2 days of Mommy being away. My milk had dried up during my pregnancy when I weaned Darrah the first time. However I was truly her attachment object and she had started to nurse again for comfort during the stressful time of our move, and had kept it up until now. She continued to nurse over the next few weeks until my milk came in and my supply was fully established. The surprise of having a new element to her “dry pacifier” confused her and she quickly lost interest and weaned herself shortly thereafter. Looking back I think God knew that I would need her help to establish my milk supply for Tarenne.

In preparing for her birth, we had developed a network of people to support us in Lansing, a city to which we had just moved. God gave to us a pediatrician whose son has Down syndrome, and his wife, who had been a nurse practitioner and successfully had nursed their child. She became my cheerleader, and Dr. Froehlke whole heartedly endorsed our efforts to give our baby the best nutrition possible. However due to her sleepy nature and lack of a sucking response she wasn’t gaining weight and office visits and weigh-ins became a routine of her first few weeks. My husband sweetly took over the middle of the night feedings, but during the day I usually insisted on putting her against my bare skin to use the feeder so that we shared that skin to skin nursing experience. The Hazelbaker finger feeder was a very slow and time consuming method of eating for our daughter, but we were insistent on doing everything it took for her to transition to the breast when she was ready.

After 5 weeks of exhaustion; from pumping, around the clock feedings, and using the finger feeder, we decided to introduce bottles of breast milk for our girl. This was much easier for her, and provided some “free time” for my husband and me. She was also gaining weight appropriately so we were then able to finally sleep through the night. I would still put Tarenne to the breast at each feeding before giving her the bottle. Sometimes she would latch on momentarily; sometimes she would nurse for a few minutes, and sometimes not at all. After I fed her the breast milk in a bottle from the prior pumping session, I would keep her on my lap as I pumped so that the emotional bonding that is so important to breast milk production remained intact. It worked amazingly well as my body produced enough milk to feed about 3 babies each day.

Joe and I saw our freezer filling up with breast milk and decided that a deep freezer would be a wise investment of our money. My Father-in-law about died during his visit when his trip to get ice from the freezer was met with bags of milk which we offered to allow him to place down in his drink. He politely refused. During our trip to Sears to get our new freezer the salesman was embarrassed as he assessed our needs and Joe told him our planned use was to store breast milk. Our reasoning was that if Tarenne never did learn to nurse, we could store enough milk in the first 6 months so that she would have Mommy’s milk for her first year.

We had only been in Lansing for a few months and did not know a lot of people in the area. Our families sweetly took turns visiting during the first several weeks, to help us with Darrah and to meet Tarenne. In order to keep up the rigorous schedule of pumping and feeding the baby, we let a lot of the housework go and just focused on our girls and their basic needs. We kept up with Darrah’s Gymboree playgroup schedule but only ventured out otherwise when necessary. Since Tarenne was sleeping so soundly we didn’t have to worry about her demanding to be fed, and we could plan her feedings around our occasional outings.

I was talking on the phone to Dr. Froehlke one afternoon when Tarenne, who was 14 weeks old by then, started to fuss. I put her at my breast, and she started to nurse. She continued to do so as he talked to me about some tests that they had run on our girl. I whispered to him that she was nursing, and he said he didn’t want to hang up and continued to talk to me about his family and his son. Before we knew it she had completely a full nursing session at the breast. He hooped and hollered with me, and told me to hang up and call Joe and then to call his wife! By the time I called Joe and my sister, he had already called his wife. He couldn’t wait for me to call her to give her the news myself!

It was that kind of support and encouragement that kept Tarenne and I trying to establish the nursing relationship. From my husband, to our pediatrician, we were surrounded by people who knew that nursing was the best thing we could offer our little girl who needed that nutritious edge more than anyone. Tarenne nursed until she was 18 months old, but I would have nursed her forever after our hard won battle!

Tarenne and I with Dr. Froehlke. He was an angel for all of us!

Therapies Started Early

Because we knew prenatally we had everything in place for Tarenne to start physical therapy as soon as she was born. We desperately wanted to help our girl thrive any way we could!

The physical therapist came to the home a few days before Tarenne's due date to meet the family and talk about what we could do. She was surprised to meet Tarenne instead. T was three days old and the therapist was thrilled with her strength already.

Darrah, our 2 year old, was always graciously included in therapy sessions. I laughed because when we were out and had to rush home I would tell Darrah, "Come on honey, we have therapy at 10", I always thought the people around us probably thought we were already in counseling. LOL

This is Ms. Jane working with Tarenne in those early days.

The Work Outs

So little and yet so strong!

Meeting Shirley

November 1, 2000

About a week ago Joe and I stopped with the girls at Wendy's for lunch. He stood in line with Darrah as Tarenne and I went to find a seat in the crowded restaurant. As I made my way through the tables I noticed a lady who worked there was looking at me and chatting away. Actually I wasn't sure at first if it was a man or a woman, she reminded me of "Pat" on Saturday Night Live. I also wasn't sure if she was talking to me, but I quickly became uncomfortable. She came over and started asking questions about Tarenne and telling me all about her nieces. I realized that she was mentally disabled and my comfort level remained uneasy. I quickly started thinking about Tarenne and how most people were inevitably going to react this way to her as she becomes an adult. I checked my emotions and made myself become open to having a conversation with this interesting lady. She told me about how she couldn't go home for Easter, although her family had invited her, (she repeated this part 4 times, it was obviously very important to her), because she had had a cold. She didn't want to be blamed for getting the kids sick. She told me the names of her family members and would pause after each one to be sure I understood her and I think to make sure I was really listening.

About this time Joe came over with Darrah and the food. As he walked towards us he had a big grin on his face. He calls me the storyteller and constantly gives me a hard time for talking to strangers. What does he expect moving me all over the country? By this time I knew my companions name was Shirley. Shirley loudly said to Joe before he reached us, "You sure have a nice personality!". He laughed and said "You do too". Well that's all she needed. She stayed around our table while we ate. She explained to us that the world is in too big of a hurry, that a lot of people don't like to talk to her. That people are just too busy. She told us things that made us laugh, and she laughed with us. Darrah kept saying "she's funny". The whole time she engaged us in conversation, she never stopped working. She was cleaning that restaurant like it was her own home. We found out that in October Shirley will have worked at that Wendy's for 10 years.

As we left some men came in that were obviously regulars. They knew Shirley by name and she knew theirs. She immediately went to them and made them laugh just as she had us. She brightened our day.

Before Tarenne I probably wouldn't have given Shirley my time. I would have politely answered and then quickly looked the other way, preferring to eat my lunch in silence, even if dining alone. But because we have had to think about our baby's future so deeply, Joe and I have been changed. We have a whole new world of wonders open to us, with people who see the world differently than we do. Possibly even better. Our boundaries have been stretched. The values we hold as important for human lives have shifted. And thanks to people like Shirley, maybe before Tarenne becomes an adult we will have already gotten it right.

Visiting Aunt Kel in Colorado

Tarenne is just 6 months old here and her little legs were so strong she loved to stand and look at herself in the mirror. Look at the joy on her face! What a gift!

From Tarenne's Journal on her 3rd Birthday

To My Dearest Tarenne on Your Birthday,

I can’t believe this day is here. I have waited with great dread for the day that you would turn three. I don’t know why exactly. I think those feelings began to evolve with the fact that at three you graduate from the First Steps program. Your services are now the responsibility of the school system. And I think because I knew at 3 I would lose control of a part of your day, of your activities, I have not wanted this day to come. I wanted to protect you from the “real” world for as long as I could. I used to say I wished I could carry you on my hip forever.

And that is just not to be. Actually it hasn’t been for quite some time now. You see you learned to walk at 18 months old and you have never looked back since. Your independent nature was actually really evident from the time you learned to crawl. You would crawl to the snack cabinet and open the door, find your desired snack and come to me with it in your hand or your mouth. Your father and I laughed because Darrah never had the initiative that you had. She was happy to be treated as a princess and waited on hand and foot. But with you life is so different. It is as if you realize that the world will see you with jaded eyes and you have wanted from your birth to prove them wrong. I know you will too my baby angel. You already do!

In some things you have to try a little harder to meet your goal. And what is so wonderful is that it almost always is YOUR goal. YOU are the one who wants to do everything alone, with out help. This strong will and determination helps you to achieve and be so proud of yourself. Your pride is evidenced on the look in your eyes as you accomplish what you have set out to do. And also by the way that after I cheer for you, you immediately ask for “Dad, Dad” to show him too. You don’t want any of us to lose out on the chance to celebrate with you. Sometimes you act shy and cover your beautiful little eyes and face with your hands. But always I know you KNOW how much you are loved. I scream a high pitched, “YEA” that has evolved just for you. Your speech therapist worried that I would throw your brain into a state of panic and you would lose focus on the task at hand. Hee hee. I can’t think of the term she used at the time. But you have become used to the exuberance you bring into my life.

I could literally sit and watch you all day long. I have been accused of candy coating Down syndrome, by some online critics more than once over the years. I just laugh. If they could spend a day in our home, in your presence they too would walk away high on life. How could they not? It is not just me that you have this effect on. Your Daddy loves you more than anything on this earth. When he gets home YOU are the one he wants to join him in our bedroom as he changes into shorts and breathes in his own space for a few short minutes. I have to laugh because you are the one of the family who causes more chaos than anyone else. That is your personality. To make us laugh, and now sometimes even purposefully annoy is, is your goal of the day. But he delights in your antics and comes out with a smile no matter how bad his day has been at work. Even with your pesky, adorable personality, the peace your spirit brings out in us is your overriding force. It is a gift of yours alone, that is for sure!

Lately you have taken to growling at Darrah in a certain tone. You don’t need words to communicate that you are trying to annoy her as she has you so many times over the three years you have graced our family. It is so funny because your intention is so obvious with your tone, your body language….you lean toward her and growl, and then walk on by. She gets so mad at you. Your relationship with her is incredible. You know each other so well. You love each other so well too! Even though the typical sister antagonizing takes place you two can not go more than an hour without each other. You will ask for her, “Dawah”, and then promptly go to where she naps and try to wake her up by making noise in the hallway outside our bedroom. She just walked into the computer room and wanted me to type, “I love you Tarenne, and so does Mommy and Daddy and Marley. You are the best!”. I think that says it all. Your love for each other is inspiring. You help each other so much already and I know you will give each other invaluable gifts as you grow into adulthood.

So today you walk into another phase of your life. Today is a rite of passage for you, for me. And you know what? I don’t have dread anymore. I am no longer scared of the future, of others. It’s not that I don’t think ugliness exists out there anymore, I certainly know it does. But your personality, your gifts have helped me to overcome. You will help yourself. You will take care of yourself. You will change minds and hearts around you. Yes, you will be hurt a time or two. You are sensitive and perceptive. So was I, and I too have been hurt. We all get hurt through our lives. But I am more confident in your abilities, your strength, your determination, your intelligence, than I have ever been of anything in my life.

You are amazing. You have changed me in so many ways. My heart soars that you are mine, not to keep but to let go of. Not to hold on my hip, but to hold my hand. YOU have protected me Tarenne Aubrey. YOU have taught me. YOU have loved me like no other. YOU are so special, not because you have Down syndrome but because of who you are. I literally thank God each day for giving you to our family, for gifting us with your presence. I literally have my breath taken away more times than I can count through out each day by you. Your smile, your sparkle, your humor, your heart, your mind, your compassion, your love overwhelm me.

Thank you my girl for growing, for ridding me of my fear, for giving me more confidence than I could have ever dreamt of having before you. I look forward to this stage where we walk side by side, holding hands and helping each other, teaching each other. I will teach you the ways of the world and you will teach me the ways of heaven.

I love you! Mommy

“In My Daughter’s Eyes” Contest Entry

My relationship with my daughter began at conception with the love of any mother. However fear quickly invaded when we found out that Tarenne would be born with Down syndrome. I didn’t know what to expect and prayed that I would be strong enough to accept God’s will for this child’s life.

I needn’t have worried. Tarenne will never witness that fear in my eyes. Nothing could have prepared me for the changes she would bring. At 9 months old I said that if she never accomplished more than she had at that age, she would have done more than most; she had saved my soul. She indeed was sent to rescue me! I know strength and wisdom that God has given me simply through this child’s eyes, which I would never have known otherwise.

Tarenne is my light. It’s hard to be sad when you’re in the presence of someone who loves unconditionally. The world would be a peaceful place if everyone knew the love of another who loves in this way. When I do let the whisperings of the world cloud my judgment all I need is a few minutes alone with this child who has so many gifts to share. Her presence melts my heart and clears my mind.

Since Tarenne was born, she has made her own way. Her achievements are indeed on her own timeline, but the effort that she exudes and her spirit ensure that she never gives up. I used to dread the arrival of the day when I could no longer hold her on my hip and protect her from the world. However she has taught me that we will walk hand in hand. I will show her the ways of the world and she will show me the ways of heaven!

Tarenne and Our Aliza

Tarenne is such a joy in our lives we were thrilled when a couple asked us to adopt their baby girl who was born with Down syndrome.
She spent 2 weeks with our family until her parents changed their minds.
We will always love her!

Tarenne is now 8 Years Old!

Please come visit her at our daily family blog: