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!