I know its been a little over a month since I’ve written a post, its been a busy month! I like to devote a lot of time to each post I write and the time hasn’t been there recently. Trust me though, we are all doing wonderfully. Today I had the wonderful opportunity to be invited to a family meeting where a caring group of family members met to determine the fate of a child with Down Syndrome. I don’t know all the specifics, nor do I feel comfortable telling their own story on my blog. My job was to let them know what it’s like to have a child with Down Syndrome, to give them our story. I feel blessed to be able to share the amazing things I have learned about having a child with Down Syndrome, but this feeling is always saddened by how little people know about it. How few people have met a person with Down Syndrome and how scary a life that involves raising a child with special need seems. Time and time again I wish I knew what I know now at Ellie’s birth. I am hoping that by the time my children have kids people will understand that we are all different, and that a different life is never bad.
So knowing I would be nervous (there were about 45 people there) and possibly an emotional mess I typed out an essay to read to the family. Here is what I told them:
When I was 13 weeks pregnant with Ellie, at our first ultrasound, they detected a thick nuchal fold and we were told there was a possibility our child had Down Syndrome. I was devastated. I cried for two days. We told no one, not our family, not our friends, not anyone. I had never met a single person with Down Syndrome in my life. Abortion was never considered but there is no doubt that we were terrified. I had opted out of prenatal screening so we let that secret sit way in the back of our minds and looked to our 20 week ultrasound to confirm anything. At the 20 week ultrasound we waited with anticipation, anxiously looking at the ultrasound tech for any indications that she saw something. When the ultrasound was completed, we were told there were no markers for Down Syndrome. I vividly remember being told that there was no sign of a heart defect and no indication whatsoever that our child would be born with T21. Admittedly we were relieved by this information. We left the office feeling certain our lives would continue just as they had before and the vision of the little girl we had always imagined for our child would remain intact. I confess there was a tiny piece of me that never let go of the thought that our child had Down Syndrome. I would rarely acknowledge that thought and never uttered it to my husband, but it was there. And its existence possibly made Ellie’s birthday a little easier, if only a tiny bit.
Ellie was breach as I was approaching the end of my pregnancy so we made the decision to have the doctor perform a procedure to turn her and then if the procedure was successful they would induce labor. All went according to plan and 13 hours after I arrived at the hospital on September 29, 2013, Eloise Nicole was born. I remember when she was born that she didn’t cry. My husband kept asking the doctor why she wasn’t crying. She looked slightly more blue than my first child but the feelings of having her superseded any worries. I held in my arms and immediately noticed how floppy she felt. I tried to remember if my oldest felt that way but couldn’t. As the midwives were doing their initial assessment, I saw a worried look in their eyes. In a blur of emotions and exhaustion, I can see the midwife approaching me and saying the words Down Syndrome. Then within minutes she was taken to the NICU and the on call pediatrician was being called in. Sometime later the doctor came to see me and she felt confident that Ellie had Down Syndrome, she mentioned markers such as crease along her hand, and a space between her toes, things I had honestly never heard of. Flashing through the blur that was Ellie’s NICU stay can be hard to look back on. The information flooding my brain all while worrying about Ellie. We met with doctor’s, therapists, specialists. I received a call and email from our local Down Syndrome chapter. Two families who reached out to us when days felt hard, days I hate to look back on but acknowledge they were part of our journey. During Ellie’s weeks in the NICU it was also confirmed that Ellie had a heart condition that would require open heart surgery. We met with a cardiologist and were explained what words like heart failure meant and how to determine how badly her heart was failing her.
The morning after Ellie was born my husband and I sat in a room full of people. We were invited to join in a meeting to discus Ellie’s case with everyone involved. I was wearing pjs and slippers. I felt like I was going to cry during the entire meeting. I felt completely terrified yet completely at ease, all at the same time. The head NICU doctor looked at me, and I remember these words perfectly, and said, “this may be hard to understand right now, but you are lucky your child has Down Syndrome. There are a lot of diagnosis’ out there, but few that are so heavily researched as T21.” I didn’t see it then, but I do know. There are very few diagnosis’ that have so many outlets for support. We know what to expect, we know what to look for, and we know how to proceed. There are parents out there looking for answers and trying to figure out what is going on with their children, and I have a piece of paper that says my daughter has T21, and there are at least 6 specialists that we see on a regular basis who have spent their careers understanding what that means.
During Ellie’s first year of life she was very sick, they wanted to wait till she was bigger for her to have her heart surgery so the first 6 months of her life were very difficult. I will say that the circumstances surrounding Ellie’s life were difficult, but Ellie herself was not. She has always been a very easy going baby. She rarely cried and had a general sense of ease that was tangible when you were around her. We had a lot of doctor’s appointments and trips to the ER because her heart was failing her. Ellie’s heart surgery was at Sick Kids in March of 2011. I noticed a difference in her health after surgery while she was still in the ICU. Bottles had always been difficult for her, taking hours to barely make an impact, but while she was still hooked up to IVs and lines and confined to her bed in the ICU, I gave her a bottle that she finished in 5 minutes. She actually drank it so quickly she then threw up all over me as I was celebrating the victory. Once we made it past recovery I couldn’t believe the difference and began to realize how hard her body was having to work prior to surgery and how sick she really was.
Ellie is mainly a healthy child. My 5 year old is in kindergarten so when she brings home colds Ellie generally gets them and is sick a bit longer than the rest of us. Her symptoms are usually a bit worse, but she complains the least. Every morning she takes a small amount of medication because her thyroid isn’t working properly. She has been on this medication since right before her heart surgery and will probably be on it for the rest of her life. She has blood tests every 6 months to check her CBC levels as well as her thyroid levels. I believe most children with Down Syndrome have an annual blood test to check their CBC. She has a family doctor, a pediatrician, a cardiologist, and an ENT. She sees her family doctor when she is sick, her pediatrician once every 6 months, her cardiologist once a year, and her ENT every 3 months. She sees the ENT because during her hearing tests they detected fluid in her ears and want to make sure she doesn’t have constant fluid which would require tubes, a very minor procedure that a lot of typical kids undergo. However at Ellie’s last 3 appointments her ears have been clear. She has passed her last two hearing tests and has been discharged from the hospital hearing program. Due to the anatomy of the ear for people with T21, its just important to make sure fluid is draining properly. Ellie sees an eye doctor once a year, because some people with Down Syndrome have correctable issues with their eyes, so far there are no concerns with her eyes at all. Ellie started walking at 18 months (only 3 months later than our typical child). She climbs stairs, and furniture, and tables, and anything she sees. She has been self feeding herself since she was a year old and eats just about anything. She drinks liquid from a cup and uses a fork to eat her food. She has an indescribable relationship with her sister. A bond that is one of the sweetest things I have ever seen.
Ellie has a physical therapist, an occupational therapist, a speech therapist, and a developmental specialist. All of those people come to our house and usually coordinate visits to come together. She was discharged from the physical therapy program a few months ago as she is developmentally on target with typical kids physically. We see speech and occupational about every 3 months. They give us tips to help Ellie express herself verbally and help me with ideas to work her fine motor skills. Later on they will come to Ellie’s school and help her with what she needs on a daily basis. If she needs help with potty training, they will be there. If Ellie needs a stool to sit on during story time in class because she can’t see, they can get that for her. I actually wish they were there with me for my first child because they have wonderful ideas. A friend of mine has a daughter with Down Syndrome who attends daycare and the therapists alternate between going to the day care and seeing her at home so that the daycare provider can be using their tricks as well.
Everyone who is involved in Ellie’s care was set up at that very first meeting the day after her birth. I never called anyone. They all called me and set everything up. They are all covered by OHIP. Like the doctor said, they know what to look for and they know what needs to be done. At a later date I may decide to get outside speech care if I think its necessary but all of our needs are being met. I adore everyone who is taking care of us. They have all become part of our family. They cheer for her to succeed and worry about her if something goes wrong. They are with me when she does something great, clapping and yelling, and I truly believe they love her like family.
She is a little small for her age, but I’m pretty happy she gets more wear out of her baby clothes. She is in about the 16% percentile for height and weight and will most likely always be smaller than typical peers. Ellie does not have as many words as her typical peers but that doesn’t mean she can’t express herself. She knows several signs and uses them. She shakes her head when she doesn’t want something. If she is thirsty she will grab a cup, take it to the fridge and hold it up yelling “mom.” She will clap when she is excited, she dances perfectly to music, and throws a tantrum like a typical two year old when things don’t go her way. Our daily life is completely typical. When she was first born I feel like I said the words Down Syndrome several times a day, now I am focused on Ellie as a child and barely see her as anything different from a typical kid.
We attend a physical therapy group class every Friday with other kids who have disabilities. I know about 4 families with children in area who have Down Syndrome and are Ellie’s age. They are all different. They all have their strengths and weaknesses. They all have different stories, but they and their families are all amazing. Ellie has made us stronger as a family. She has made me a stronger person. I was so terrified of what her diagnosis meant for our life and didn’t consider the positive effect it would have on all of us. When my husband comes home from work, Ellie yells like its Christmas morning. She throws whatever toy she is playing with down on the ground and runs to give him a hug. When my oldest daughter is sleeping too late and needs to get up for school, Ellie races in her room and hugs her and kisses her and yells her name and throws her clothes on her bed. Every single morning she wakes up laughing. She is an angel I didn’t even realize our family needed. Ellie is not always happy, she has every emotion just like anyone else, but her happiness is so pure, so real, that it glows from her body.
I don’t know for certain if Ellie will go to college or be successful on her own, but I also don’t know for certain if my typical kid will either. Nothing is guaranteed for any child. What I do know is that the possibility is available for both of them. There are college programs all over the country for people with disabilities and there are many people with Down Syndrome who have jobs and bills and who are handling life’s responsibilities wonderfully. There is a savings account available through the government for people with disabilities that will match your donation 1 to 3. For every $1000 you put into this account they will add $3000. Children with Down Syndrome are attending classes with their peers all the way through high school.
Life may be harder at times and different with Ellie. But that doesn’t mean that it will be bad. Some things require a little bit more time for her but I’ve realized that isn’t a bad thing. From Ellie I’ve learned the value of taking things slow, the power of a smile, the need to take breaks for hugs, and that traditional success does not dictate the importance of a life.