The Demands and Sacrifices

I had breastfeed my son and was determined to do so with Ashlynn. I did not realize that Downs babies have low muscle tones and this would be nearly impossible to do with her. Plus how could I be at the hospital to feed on demand? I felt as though I was less of a woman because of this. I had also hoped for a VBAC, vaginal birth after c-section, with her, but this was also a farfetched dream, due to pregnancy complications and not knowing if Ashlynn's medical conditions could tolerate such a birth. I was heartbroken and did not know how to talk to my husband or anyone else for that matter. I felt like I was broken, what was wrong with me that I made my daughter's life so uncertain. Thoughts raced through my mind, it felt like a million at a time, what did I do. I knew, well thought that things would be easy, but was soon faced with all the demands and sacrifices. As a mother, we all make sacrifices, like sleepless nights, swollen breast, and need I continue to list. But when you have a child with special needs, it takes more. You are demanded to be more patient, to learn new things, and the most IMPORTANT demand of all is learning how to fight for your child. Your eyes are open to a new world, you never see how a family struggles to have their children seen as other "normal" children are. It sometimes feels as though you are fighting a war, to have people look at Ashlynn for Ashlynn, not like she is someone from another planet. The comments that some people can make, will make you wonder, "WHAT IN THE WORLD!" Here are just a few, "Is there something wrong with her?", "If she is one why is she not walking?", "Is she slow?", and there are a thousand others. Some of these comments is where the demands of your patients come in, when you really want to scream is, "Is there something wrong with you, are you slow?????" A lot of the sacrifices that you make with a special needs child is very similar to having any other child, but there are, what feels like, 100 times more appointments, your baby meeting simple milestones, more medical problems to face and deal with, and many other things. Even though I have to give into demands and there are more sacrifices Ashlynn Ja'Kobi Curista Nicole is worth every bit!

Why didn't someone warn me?

It was and in moments, still is, easy for a person to blame everyone around them for the problems in there life. I did like to tell myself, that mine and my husband splitting up for a period of time, was not my fault. It was the fault of all the other families out there who did not warn me about the toll that a special needs child could have on yourself and your loved ones. There were a lot of other issues that also caused the separation, but I am going to focus on demands that a special needs child can have.
I can not remember one person that gave me advice on how me and my husband could tackle all the obstacles my daughter has to face. No one warns you of the "ugly" side that this can cause in your marriage. This is what gave and gives me the courage to be so brutally honest with you. I am hoping that one mothers honesty can help others see that it is not and will not be easy.
The question was always stuck in the back of my mind, "Why didn't someone warn me?" I know that I am not the only person in a marriage, that has faced the issue of baring all the responsibility of appointments, hearing bad news by myself, having no one to talk to, no one to understand why I am ANGRY, no one to hear me cry and not judge me for my emotions. I know that a lot of us woman do not want to seem as though we can not take on the world, but let's face it ladies, when it comes to our children we can only bare so much. I feel empowered to let other woman know they are not alone in these feelings.

The Weeks That Followed

No one person or book can prepare you for the emotional toll that having a baby in the NICU and you can't help them. I read books, talked to people, and looked info up on my own and I still was unprepared. I know that one thing no person or reading material informs you that you and your spouse might react and handle things differently. My husband and I was like oil and water handling all of medical issues of my pregnancy, birth of our daughter and all of Ashlynn's new issues. I felt like he was not handling it all, that I was on my own. I also felt like he didn't love our daughter the way that I did. Let's face it ladies, all moms feel like no man can love our children the way we do, simply because this child grows in us. We feed the baby, protect the baby, and then give life to these precious gifts from God.
I soon came to realize, way after the fact, that men just handle things differently. I was going to the hospital, a 45 minute drive from our house, multiple times a day and my husband went only once or twice a week. For the life of me, I could not figure out why he did not want to see our daughter. I started to resent him and I could only think that if anything happened to my daughter, it would be his fault. What am I thinking, why am I angry at him? There was no reading material on how couples handle all of this together. Am I suppose to feel this way, am I suppose to carry all of these emotions on my own?
I was taking care of our almost 2 year old son, pumping breast milk every 1 1/2 to 2 hours, cleaning, cooking, going back and forth to the hospital. Then I started working when Ashlynn was a month old and still in the NICU. So on top of everything else I was working 3rd shift, hardly sleeping and continuing to do everything that was expected of me. I was tired and drained. I felt lonely and unappreciated and planning all of my daughters appointments on my own. I was depressed and felt like I was on the verge of a nervous breakdown. I didn't talk to anyone about my emotions and thoughts, mostly because I felt guilty.
I kept pretending that I was happy, I never communicated to my husband that there was a problem. I felt like I was in the dark and had no one. I even became angry at God, I could handle the Down Syndrome, but why everything else. I became almost bitter. Unfortunately, my husband received this ugly part of me. Maybe if someone would have been honest about there feelings towards everything, then I could have been better prepared. Maybe?

The Day of Surgery

I remember feeling sick and then feeling like I wanted that day to have never came or to hurry and end with good results, but as we all know to well time does not move at our desires. I remember them telling me to go see Ashlynn before they took her back and I felt this urge to hold her, I kept telling myself to be strong, don't cry this time when you look at her. Just be strong Sarah and you will take her home soon... Well, I went into the NICU and seen my baby girl, sprawled out in an incubator, I cried, the only thing that kept going trough my head was what if she doesn't come out of surgery?? I will have never kissed, touched, smell, or hold my baby before she has no more air in her lungs. (I am the type of person who prepares for the worst but expects the best). I cried even harder and then they told me it was time and that the doctors would let me know how everything went and when I could see my daughter post op. Ashlynn's surgery started at 12pm. I waited and waited, I felt like a nervous break down was coming, what do I do? I can't eat, sleep or focus on anything, but making sure I could pump enough breast milk for her was all I had. I mean I had to feed my baby. I called back at 2:45pm, I mean the doctors said she would be out by 2pm and I could see her at 2:30pm. I got a simple, she's ok we will call soon by a nurse.. Well here came 4:30pm, I called and received the same calm answer. I continued every 2 hours, until 9pm hit and I went hysterical. I called my husband, I was still a patient, and was on the verge of a nervous break down. He arrived and went straight to the NICU and demanded to speak with someone. I sat in my wheelchair fighting tears and horrible images and thoughts. Ashlynn's doctor came and spoke to us, explaining that Ashlynn had an allergic reaction to the epidural and that she had stopped breathing on her own and was unresponsive. They had to revive her once and they had been trying to discover why she still could not breath on her own. I was in shock, all my worst fears are coming true. He also explained that her case was more sever then they had thought and planned for. Not only did they corrected the Duodenal Atresia, but they had to untwist her bowels and remove her appendix. Oh my gosh, and I was numb again. The next 24 hours was going to be the indicator of what to expect of Ashlynn's life span. I was told to prepare for the worst. She pulled out that long 24 hours, she struggled and fought hard. It took them 2 weeks to get her to breath on her own and 3 weeks for her to come off of the Nitrogen. She was not allowed to eat, so she was given an IV and fed fat lipids. She went from being a baby doll at 5lbs 3ozs, to a sick puny 3lbs 4ozs. I was frozen emotionally with fear. The day I was discharged was most difficult because your baby is suppose to go home with you, what do I do now I asked myself?

Not Only Downs but a new Diagnosis to go with it!!!

I was required to go to the Genetics Doctor twice a month in the beginning and then one to two times towards the end. This was difficult because not only was I seeing them but I also had to see my regular OBGYN and with all my doctors appointments it was hard, especially since I was receiving amino drains and having an almost 2 year old son. I was going to get my routine level 2 ultrasounds,when they noticed a blockage in Ashlynn's intestines, this is called Duodenal Atresia. I was informed that she would have to have surgery right after birth to fix the blockage so she could digest normally. And with this condition came a lot more complications with the pregnancy. This is were the amino drains came in, at least once every two weeks, I had to go and have the amino drained. I was measuring way ahead of what I should have.. When I was 27 weeks i was measuring at 37 weeks, you talking uncomfortable..LOL.. The drains did not hurt, they were uncomfortable and they caused me to be on bed rest for the next 5 days every time, which was inconvenient with an almost 2 year old. Not including they made me go into preterm labor more than once and I had to be hospitalized to stop the labor. And then the contractions started at 25 weeks, until I gave birth and it didn't help to be in pain when I had morning sickness everyday!!!! I couldn't wait for my baby girl to be born and for me to no longer be miserable, but I also knew that once she was out of my belly I could no longer protect her and then I would be struck with grief and depression all over. I was scared to death of not being able to protect her from people and surgery.. I didn't know which was worse to be pregnant and miserable or to have my daughter and not be able to protect her. At 29 weeks, they refused to do anymore amino drains because they were uncomfortable with the risk of her coming to soon. So here I was in the summer, being WAY bigger then I should, and feeling helpless and alone. I had planned for a VBAC (vaginal delivery after c-section), but the closer I came and the more doctors told me how unsafe it would be I planned a c-section. Ashlynn was born at 35 weeks and 4 days on July 14, 2010 at 1:49 p.m. And weighed in at 5lbs and 3ozs. I couldn't touch or hold her because they stuck a tube right down her little throat and put her in an incubator. They wheeled her beside me and I could hardly see her and I remember crying tears of joy when I heard her LOUD scream. I think that I had some hope that the test were wrong and all of this had just been a bad dream. But after recovery and heading to the NICU, I was face to face with this little angel , that had sandal-gaped toes, and beautiful big brown eyelashes, a head full of hair, and the biggest feet I have EVER seen on a baby. LOL, I remember thinking no wonder the child wouldn't stay out of my ribs, she couldn't with those things..LOL...Then came reality, the doctors confirmed her Downs diagnosis and I didn't care, all I seen was my daughter, MY beautiful baby girl! I didn't see a baby with Downs, I seen a baby who needed her mommy to love and care for her as I would my other child and future children. And then the next day came and I felt like everything around me was crumbling.

The Hardest Part of My Battle

I remember the phone call I received like it was yesterday. I also remember the emotions running through me all to well. When you, as a woman, become pregnant with a baby, you have certain hopes, dreams, and goals for you little bundle of joy that is growing in your belly. You assume that your child, your creation, is going to be just like everyone. As far as being smart, growing and meeting all of their milestones. You never dream that you will have a baby that you can't assume what their mental capacity will be or when they will talk, crawl, walk, anything that you read in all these What to Expect When You are Expecting Books, or The First 5 years. These books do not prepare you for a special needs child.
I remember feeling numb for a brief moment and then filling up with, what seemed like a million, different emotions. I remember feeling like I was grieving over my baby that was still alive. What is wrong with you, Sarah, are you that selfish... This is what I was thinking, I still had a baby in me that needed me but I could not stop crying, being angry, asking why me, and what will my daughter's life be like. I became uncertain of my ability to care for a child that had an uncertain future and if I was capable of giving her a life that allowed her to become a successful person in life.
I became determined to be the person to offer my daughter everything in the world, as I did and do for my son. To know that if I did everything in my power to become knowledgeable in the "Downs World" and the resources available I would be fine, she would be fine. The Genetic Counselors and Doctors try to explain that the feelings you have are normal, they are to be expected. At the time though, you do not feel like these feelings are normal, you feel guilty for thinking these thoughts and then you feel even more guilty when they tell you "it's normal". I wanted everyone to shut up and stop telling me what is normal and not normal emotions for this upsetting news. To stop offering me advice on my options of adoption, abortion and keeping the child. All I wanted to hear was how do I support this baby, what do I do to help her grow and develop at an average rate, how to help my family understand all of this news. Help me know what my options are after her arrival not before. That is when even more bad news came from the Geneticist OBGYN....

When Our Battle Began

I found out I was pregnant on November 29, 2009. I was super excited and ready for another baby! My son at the time had just turned 17 months and, although it was a surprise, was ready for baby number 2! I went in April to find out the sex of our baby and was told IT'S A GIRL!!!! HOORAY is all I could think of, then the nurse asked if I was interested in being tested for genetic disorders in the baby. I said no, but my mother informed me it was better to be prepared then not to be, just in case.. I figured no matter what the result would be, this is my daughter, Ashlynn Ja'Kobi Curista Nicole Barnes. She's mine, no matter what. Then the daydreams of cheer leading, gymnastics, school, sleep overs began. As a mother, we all dream of who and what our children will be when they get older. I received a phone call from my OBGYN stating that I needed to come in and discuss my test results, their was some abnormal results. I then remembered telling my husband that their was something different and wrong with this pregnancy. I just thought it was nerves, until I went to hear what the doctors had to say. He informed my husband and I that our results for Down Syndrome had came back abnormal, that there is a chance it could have been wrong. He wanted us to go to a Geneticist to receive an amino. So, we went and waited and waited for the results. A week felt like a year to me and I was very uneasy and worried. I received a call back and was informed that my daughter would be born with Downs and that I had to continue to see the Geneticist because I was considered to be high risk now. Here are some ultrasound pics of Ashlynn and some pics of me being preggo.