You and I aren’t so different. We are both mothers. We both had to fight hard to conceive and deliver our kids. Like you, I had Asherman’s syndrome. I endured the hysteroscopies and the endless ultrasounds. I went through miscarriages. We both had our struggles, but we both ended up with beautiful children.
Unlike you, I ended up getting an extra surprise on the day of my daughter’s birth. You see, she was born with Down syndrome. I was completely unprepared for her diagnosis. I loved my child fiercely, as only a mother can do, but I struggled. I had to deal with a whole new set of worries in unchartered territory.
I am happy to say that today, I am an advocate for my daughter in every sense of the word. My daughter amazes me. She is brave, determined, and joyful. She has taught my family endless lessons. She is more alike than different. As her mother, I worry. I worry about how the other kids in school will treat her, and how they will perceive her. And my biggest worry of all is that someone someday will call her a “r****d”.
That word is now considered hate speech. Did you know that when you used that word live on social media yesterday? I know you said that you made a mistake. I give the people in my life grace when they use this word. I correct them and explain why it is so hurtful to myself and my daughter. But I give them grace.
However, I do not think I can grant you that same grace. Here is why. You are a public figure. You want the success that comes with being a celebrity, then do better. If you are filming, choose your words carefully. Choose them as carefully as you choose your wardrobe, because words matter.
Some teenager out there that worships you saw that video you posted and thinks it’s cool to use that word now. Who is the victim in all of that? My daughter and her peers. Mother to mother, I am begging you to remove that word from your vocabulary. I would not be the advocate I claim to be if I did not confront you about this. Spread the word to end this word.
If I had a mom/wife super power, it would have to be my laid backness. Is that a word? Anyway, I am not a huge planner. I live each day in the moment, and I have a tendency to let go of things that aren’t important. I plan the important things (therapy, doctor visits, advocacy work) but for the most part, we are very relaxed in my house. I used to appreciate this side of myself, until I became Sienna’s mom. There are days I have to fight every urge in me to try and be the cool mom. Occasionally, I have to tell another mom to keep her kid away from my kid. I hear the congested cough that is just a typical cold for your typical kid and my mind goes to sleepless nights, breathing treatments, nasal aspirators, essential oils, and dreaded hospital stays.
Last week, I yelled at a shoe saleswoman. She patted Sienna on the head. I handed her sanitizer and told her to use it before she touched my kid again. She just stared at me. My old self would stare at me too. Get over yourself and your germs, Shannon. Do you think you’re more important than everyone else? Well, not more important, but germs are different for us. I had to let go of that innate laid backness and embrace my uptight germaphobe side.
Sienna is one of the 40-50% of children with Down syndrome that has a heart defect. She has an Atrial Septal Defect or an ASD. It’s a hole in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. Sienna’s right side of her heart is enlarged due to this blood flow.
When Sienna was first born, we were told that her ASD might close on its own. We have since learned that it is on the moderate to large side, so it will require surgical intervention. The goal is to wait for her to be 4 years old. We hope and pray that she will qualify to have the procedure done in the catheter lab, but there is still a chance that she will need open heart surgery.
We have to be on the lookout for signs that she is struggling because the defect can cause pulmonary hypertension, congestive heart failure, and there is an increased risk of stroke. It’s also very important to try to keep her as healthy as possible. If Sienna were to get pneumonia, it could cause an array of health complications, and would require an immediate hospitalization.
A person with Down syndrome is 62% more likely to get pneumonia. They also are more susceptible to illness such as ear infections, tonsillitis, and upper respiratory infections like RSV. Why? One reason is due to abnormalities in their immune systems, usually the T cell and antibody-mediated immunity functions that fight off infections.
Another reason is their low muscle tone. Remember the post I did on hypotonia? As I mentioned, hypotonia can affect anywhere, including the lungs. It can result in difficulty coughing up mucus, which then settles and results in an infection. Sienna’s small passageways in her nose and ears can also make her more prone to infection.
This is why parents of children with Ds may be a tad over protective during cold and flu season. What may be a little cold for your “typical” child can and will turn into something a lot worse for our children with Ds.
When Sienna’s eye starts to goop more than usual and her nose starts to run, I know that it is the beginning of a cold. It never just stays a cold, and it always lasts months. I do everything within my power to keep it from escalating to pneumonia. Every morning and evening, we use a hospital grade nasal aspirator. This little contraption has helped us immensely. We are also a big fan of essential oils, probiotics, and bone broth in this house. Her doctor recently gave us the green light to add Zyrtec to our regimen, which is also helping. Let’s hope our methods continue to work through cold & flu season. I know quite a few parents who have lost their little angels to RSV and these types of illnesses. Please if you are feeling sick or have a cold, stay away from Sienna until you feel better.
I sit in my living room, which is now full of strangers, thinking that this has to be some nightmare that I will wake up from. I see Haley on the steps playing quietly by herself. Tears fill my eyes. Is this her life now? Will she have to sit on the sidelines while strangers come in our house and examine this baby?
I observe as they do test after test on my newborn. They move her arms and legs which instantly flop down. They make loud noises to see if she responds. They ask to watch her nurse to see if they can determine why she won’t latch. I was up all night with her trying desperately to get her to breastfeed. I am severely sleep deprived, and if I am honest, I am still in a state of shock. I cannot do this. Everyone keeps telling me that I can, but I am not sure I believe them. I feel utterly alone.
The therapists and coordinator leave after a couple hours with their recommendations for which therapies we need to begin. How can a newborn need therapy? Thank God, my cousin is here. She works in this field, and is familiar with the emotions I am experiencing. She tells me that this will become our new normal and that it won’t always feel this overwhelming. I still want to run out the door and never look back.
Fast forward to now. Those strangers I was talking about…. Well, they certainly are not strangers now. They have become a crucial part of our family. Our coordinator has been there for me since the day Sienna was born. She has provided resources, insight, and support at every turn. She has been a vital piece of our puzzle. She took the time to find the right therapists for Sienna. Not everyone was a great fit, and she assisted me patiently until I found the team that worked best for our family. And, oh what a team we have.
Imagine if someone visited your home on a weekly basis for over two years, with the intentions of helping your child. I don’t know if it is the therapists we have or the time they have spent in our home, but they are so important to our journey. They have been a support system for me. Sienna’s nutritionist was pretty much my therapist during that first year of Sienna’s life. I called and texted her so many times, and every time she responded immediately with a resource. I could not even tell you the amount of times she’s seen me cry. Then there’s our physical therapist. Every time she arrives at our home, Sienna’s face lights up with joy. This woman is one of her best friends.
Yesterday, our coordinator and physical therapist performed an evaluation on Sienna. It doesn’t seem so foreign anymore. In fact, my cousin was right….it has become our new normal. I expected this to just be another evaluation until our coordinator pulled out the Transition Handbook and started talking to me about Sienna transitioning out of Early Intervention and into the world of IEPs. An IEP is an Individualized Education Plan.
When Sienna turns 3, her EI services will be cut off. This is how it works. It is something that has terrified me for a long time. There will be a whole new set of challenges for us. I will have to fight for inclusion. I will have to fight for services. I will need to prepare a binder and insist that my child is seen as valuable. I will have to do all of this without the support team I have had in place since Sienna rocked my world.
When our coordinator mentioned it, a pang of fear hit me immediately. Again, eyes watering and tears flowing, but for completely different reasons. I cried at the idea of them being in my house examining my newborn baby and now I am crying at the idea of them leaving us. The irony is not lost on me. Until you have sat in my shoes, you have no idea how this feels.
I know I will tackle this new challenge and I will continue to advocate for my girl. I will learn all I need to in order to ensure her success, but I am still allowed to be sad and scared. Transitions aren’t just hard for kids.
“If you are successful, it is because somewhere, sometime, someone gave you a life or an idea that started you in the right direction. Remember also that you are indebted to life until you help some less fortunate person, just as you were helped.” -Melinda Gates