Sometimes acceptance takes time and that is perfectly ok! We are thankful for the moms and dads who open up their hearts and share parts of their story that maybe are not all wrapped in rainbows and sunshine. Here is a hint though they always end with rainbows and sunshine. We welcome Carly’s mom, Kim to the blog today.
“I have struggled with infertility my entire adult life. My oldest son, Timothy was born in 1994, when I was 21, with no assistance becoming pregnant. My twins William and Joshua were born in 1998, with fertility assistance when I was 25 years old. Mark and I became a couple in December, 2001. For 10 years, we never prevent pregnancy. The day before we were to say ‘I Do’, we found out I was pregnant. I immediately went off all of my bipolar medications. Unfortunately January 4, 2012 at almost 19 weeks we lost the baby.
In June 2012, we began trying to conceive. On August 23, 2012, our pregnancy was confirmed; we opted out of any prenatal testing. The entire pregnancy I was off my medications for bipolar. I had bad mood swings, awful anxiety, and worried constantly that this pregnancy would also end in miscarriage. At 36 weeks, I went for a routine sonogram at the OB’s office. I was sent to the hospital as the sonogram had a bad score. As I recall, they score sonograms on a 7 or 8 point scale, and I had a 2. Up to this point, no one had mentioned anything about the possibility of the baby having Down syndrome. I was put inpatient for observation and more testing, such as a fetal echo-cardiogram. The baby was cleared of any health problems, but the doctor told me to prepare for a child with Down syndrome, in a manner that implied I should have already known.
I was discharged from the hospital with 2 weeks left until my scheduled c-section. However, my anxiety became so uncontrollable – due to the news that my baby would likely have Down syndrome – that my doctor decided for the sake of the baby due to stress, that he would perform a c-section at 37.5 weeks.
On April 15th 2013, I was admitted to the hospital to determine if a c-section was able to be done because c-sections are not supposed to be done before 38 weeks. Additionally a psychiatric consult was needed to approve the c-section as well. After a few hours of waiting and talking with doctors, a baby girl was born. I remember asking the nurse immediately after she was born, if she looked like she had Down syndrome. I recall the nurse saying that it looked like she had some markers for Down syndrome, but they would test her to be sure, then I remember crying. I do remember not wanting to hold the baby, but I didn’t know why. I think that holding her would have been accepting that there was something wrong with my baby. Based on discussion with the psychiatric doctor both before and after the c-section, he decided it was best for me to be admitted inpatient for psychiatric care. He began looking for somewhere for me to go, while I was still in the hospital with the baby. Shortly after her birth, the diagnosis of Down syndrome was confirmed by the pediatrician. The peds doctor at the hospital, Erin, who is currently Carly’s pediatrician, gave Mark a folder overflowing with material all related to Down syndrome. During this time, I did not want anything to do with her. I did not want to be around her, I did not want to hold her, she completely stressed me out, and yet, I still didn’t know why. One thing I managed to do, was give her the name Carly Ann. The psychiatric doctor told Mark that the only bed he could find for me was in Buffalo. Both Mark and my family felt that this was in no way beneficial for me or the baby as we did need to figure out how to bond. After a phone call from my sister Debbie, who worked for a very influential doctor at another local hospital with a psychiatric floor, there was a room available for me in Syracuse.
While I was in the hospital, the day Carly was born, after Down syndrome was confirmed, word started to spread through our families. Nobody knew what to expect, what to do, or what could even be done. Mark went home that night, and sat the three boys down at the dinner table and told them about her diagnosis, a conversation that went pretty well. There were of course some questions about what Down syndrome meant for Carly. The best Mark could answer at the time was just that she had no health concerns; she might just learn things a little slower or different than they did. My sister Debbie called Mark and told him that her boss (who was able to get the bed for me in Syracuse) also relayed the message that Mark absolutely needed to call “Early Intervention”. So as the night wore down, Mark called Early intervention and left a message, he also called the Down syndrome Association of Central New York.
After the typical three day stay for the c-section, I was transferred to the other hospital in Syracuse, thanks to my sister. I was inpatient for psychiatric care for about two weeks. During that time, Mark brought Carly up a few times to be with me. I still did not want to be with Carly, and I still did not know why. She made me feel very uncomfortable, one time, Mark put her in my arms, and I handed her back in less than a minute.
During my psychiatric stay, Mark heard back from Sherri Botego of DSACNY. According to Mark, Sherri was a wealth of support. She reassured Mark that everything was going to be ok. At the end of the day, she is just like every other baby, feed her, change her diaper, and love her, that’s all she needs right now. Sherri was able to calm Mark’s nerves down a bit as he had a million questions with no answers. She told Mark about some local resources, specifically The Buddy Walk, and GiGi’s Playhouse. She also advised Mark to contact Early Intervention. Mark did hear back from Early Intervention as well, and had scheduled a meeting with Louise, a service coordinator, for an evaluation of Carly, in our home shortly after I was discharged from the hospital.
Once home from the hospital, I did not want ANYONE at my house, not friends, not family, and especially a bunch of people that I didn’t know from EI trying to tell me what to do. We had Carly’s evaluation with EI, wherein she qualified for services, physical therapy at that time as a newborn. As much as I really did not want people in my home, I allowed the physical therapist to continue to come as everyone else in my life kept reinforcing how important it was for Carly. Mark arranged for a family member to stay with me all day while he was at work. Once he left for work, and someone was at home with me, I immediately handed Carly off to them and found “chores” to do. Once Mark was home from work, he would care for Carly. That was pretty much the routine from May through September of 2013.
On September 5, 2013, Mark was seriously hurt at work, which forced me to care for Carly. I started getting out more with Carly. I started talking walks, as I remember reading somewhere that the best thing to do was to go in public with your baby, so that’s just what I did. I had to take her on errands, like to the grocery store, because Mark physically could not care for her. I still couldn’t bond with her, and I still could not figure out why.
One thing is certain; The Buddy Walk of 2013 is the day where I met some of the most amazing people in my life. Before The Buddy Walk, my impression of people who have Down syndrome was not an accurate portrayal at all. In my mind, I believed that people with Down syndrome were not capable of everyday living activities. That they couldn’t care for themselves, they couldn’t go to the store, basically that they just couldn’t do anything independently. I met a 10 year old girl with Down syndrome, Emma, who I will never forget talking to for about 10 minutes. After meeting Emma, and then meeting Rich and Heather, and their daughter Ellie, and then Ally from GiGi’s Playhouse and her daughter Addison, I was overwhelmed with emotion. For the first time, 5 months after Carly was born, I felt like I could breathe again. We started attending GiGi’s Playhouse Programs when our schedule allows it. We have always enjoyed Open Play and meeting new people, where we could offer our support and knowledge to parents of children younger than Carly. We have also enjoyed the LMNOP program with Carly, as speech is one of Carly’s struggles. We have discovered – with the help of LMNOP – that music is a strong motivator for speech and language for her. When I look at Carly, I no longer see Down Syndrome, I see my daughter.”
Thank you Kim for sharing your story! We are so proud of all Carly has and will accomplish in her life. We are blessed to be on this journey with you.