Over the past 24 hours we decided to tell most of our family and friends the news by email or letter. Here is the message we are sending. It has been edited slightly since we originally wrote it.
Friday, November 21, 2014
Certainly I did not sleep much last night. Many tears were shed, which made my head hurt terribly, which made it more difficult to sleep. I read a lot about Down syndrome. Some of it was reassuring, some of it was not. I am concerned about the physical problems that can be associated with Down syndrome and am praying that he would have as few of these as possible. The main thing I am concerned about is his heart. 50% of people with Down syndrome have heart defects.
We have been looking at schools for our oldest, who will be starting kindergarten in August. There is one private school in particular that we like and were leaning towards sending her there, however we still needed to look at the public school we are zoned for. We have always planned on sending all of our children to the same school and not changing schools unless absolutely necessary. Since receiving the news, the public school looks all that more appealing, since most private schools do not have many options for special needs children. I had planned on visiting the public school today, and decided I still needed to do this as planned. I had met a lady at our neighborhood park several months ago who raved about the school. Her daughter is the same age as our oldest daughter. Her daughter has special needs and is in the preschool that has special needs children as well as typical peers and starts at age 3. It turns out that this is the only school in our small school district that has this program, and we just so happen to be zoned for it! Her conversation is playing back in my head today. I can feel the Lord working in our life already and feel like He will divinely intervene thru this visit today.
As I drive to the school, both girls in tow, I decide that I cannot leave the school without asking about the special education department. I will have to explain why I am asking, because both my children appear normal, so I am praying that I will not get upset in front of this perfect stranger. I decide I will ask at the end of the tour, since I expect other prospective parents will be on the tour and will not be interested in the special education department.
When I enter the office, I am asked to complete a form with name, prospective student's name, etc. on it. The last question ask if there is anything extra would we like to see on the tour. I am so grateful for this. I write that I am expecting, and my son has Down syndrome, so I would like to see the special education department. I am also pleasantly surprised that I am the only parent who has come for the tour today, so I can freely ask any questions I have, and I do! The tour guide read my form prior to the tour and asked me about the last question. I explain that we know this is God's plan and yes I would like to see the special education department. She has had some experience with it herself, because one of her children needed speech therapy when he first started school here.
Artwork is everywhere in the school--all over the walls and hanging from the ceiling. She takes me to visit one of the kindergarten classes. She wasn't aware there was a substitute teacher today, but despite that the substitute has them divided out in groups doing different things. I would have expected the substitute to just have them all seated doing busy work. I was also happy to see the desk arranged in pods, kind of like tables, instead of lined up in rows--after all these are little kids! One of the private schools I visited had preschoolers in individual desks in rows, and it seemed so sad to me because they were so little! We went thru the gym class. Music was blasting and the kids were running around taking turns throwing a kick ball thru a hula hoop--it looked so fun!
Because the tour guide felt that she could not answer all of my questions regarding the special education program, she ushered me in to meet the principal and ask him any further questions I had. I was hoping that I would be able to meet him. I asked about the possibility of having my soon to be 3 year old enter next year as a typical peer. He said that is determined in July and is mostly determined based on behavior, as my daughter is pulling stuff off of his bookshelf.
Two other things occurred today. I visited my grandmother in the nursing home and told her the news. She was the first person who was really not saddened by the news and instead told me what a blessing it would be. I also think she felt encouraged that I told her how important it was that she pray for us and that I was so thankful she was still living (as all my other grandparents are not) so that I could share this with her. I also contacted a friend from high school who has a son with Down syndrome, as she graciously called me, despite not speaking to her since high school. She only had encouraging things to say.
Thursday, November 20, 2014
I am fortunate that my obstetrician is my friend. We went to medical school together and worked together until she decided to open up her own practice. I've been waiting for her to tell me the results of the Panorama test I had drawn 10 days ago. It detects fetal DNA in maternal blood as early as 9 weeks! It is a prenatal screen that detects chromosomal abnormalities and also detects the gender of the baby. I decided to get the test done so that I could find out as soon as possible if I was having a boy or girl, but also if there was something wrong, I wanted to be prepared. Laura, my doctor, texted me this afternoon asking if I was working. I told her that I was, but wasn't busy and was hoping she was going to let me know if I was having a boy or a girl!!!! I was expecting her to call or text back, but she didn't. Well, she must be busy. When I left work, I called her and left a voice message. I started to worry a little as to why she didn't just text me back, and why the nurse wasn't just calling me to tell me the results. I was probably just being paranoid.
Then she called. We were having a boy...and he has Down syndrome. The test read that there is a 99 out of 100 chance that he has Down syndrome. The test is extremely accurate. The Panorama website quotes a false positive rate of 0%. I chose to believe that the test was correct, and not to focus on the 1 in 100 chance of there not being Down syndrome. My initial response was overwhelming grief--mourning for the loss of his life being how I had envisioned. However, I was also grateful that if there was a chromosomal abnormality, it wasn't something that meant certain death in utero or shortly after birth, as like some chromosomal abnormalities. I also was grateful that he had something that was well known and well researched instead of a chromosomal abnormality few people knew anything about. Overall I knew that this was God's plan.
Wednesday, November 19, 2014
Today we posted this picture on Facebook. We are so excited! The girls and I are hoping for a girl, mainly because I want to use all those cute baby clothes again and do not want to paint the nursery. Eddie, of course, wants a boy. We should find out soon.