Meet Millie

When Mackenzie was twenty weeks pregnant, the doctor noticed irregularities on one of Mackenzie's ultrasounds, Mackenzie knew immediately that something wasn't right. Although her mother and husband believed she was crazy, she knew she wasn't. She thought that her picture-perfect family was destroyed because of the uncertainty that came with her diagnosis. Her pregnancy was largely spent battling these emotions and trying to make everyone happy about her birth, even if it wasn't what they had anticipated. Now Millie is 4 months old, and they feel very fortunate that Millie is as healthy as she is. It is typical for children with Down Syndrome to require additional medical care. Life is more normal than expected right now, but Mackenzie is concentrating on living in the present, even though she knows as she gets older, there will be more hurdles to overcome. 

Q: When did you initially find out about Millie?

A: At our 20 week anatomy scan we were told she had a cyst on her brain and was measuring small. The doctor said it could be nothing or a really long list of things, none of them were super great.

Q: What was your reaction when you found out? 

A: Not great. We went back and got the ultrasound. We were waiting to be taken back and I was looking at the ultrasound and I was like she has Down Syndrome. My husband was like “oh my gosh you always say stuff like that. You always worry they are going to tell you something you didn't want to hear.” Until you hear them say everything is gone, I think every mom is like what if? So, I think I knew. But even from the beginning I knew something would be wrong. I thought I would miscarry, I thought something. 

Q: And you went ahead and did testing, right?
A:  He [the doctor] recommended that we do a blood test for genetic testing and see MFM, so that's just a really detailed ultrasound. Actually, when we saw MFM they saw one marker, she didn't have a nose bridge, I just started sobbing. I was like great and put my face in my hands. She [the ultrasound tech] was like no no no that doesn’t mean anything. Given your health and your age and everything you have less than a 2% chance. We left that appointment, my mom and my husband were with me and they were in the parking lot acting fine. I kept being like so we feel good about this? They were like yeah, that's what we needed to hear, everything is fine. I don't know if i feel good about this, I need to see the blood result before I can be like we are in the clear… We got the blood result on Friday (four days later).

Q: How do you feel like you have coped with or handled this?
A: Lots of crying. Like lots of crying. I think the anticipation period was the worst part, for sure because there is such a wide [range of things that can happen], they can't tell you anything. and I think the doctors are so numb to stuff like this, there’s a lot of fear based stuff they tell you, and it's always “these babies we see xyz” or “we will see by 34 weeks we will usually see xyz with these babies.” It just felt like something was coming and it was my job to pay attention to how much she moved or whatever. The anticipation for sure. A lot of anger and a lot of everything. I felt like I was ruining my picture perfect family because I just didn’t know what was coming.

Q: Now fast forward to Millie being here, what do you feel like Millie has taught you?
A: It's been very healing to see my kids love on her because I also feel like they were obsessed with feeling her kick and whatnot and we kinda told them what was going on and it's almost like everyone backed off including myself, like totally detached from the situation. So the last half of the pregnancy was working really hard to get everyone excited again… Life is more normal than I thought it would be, she is super healthy which is like a best case scenario because it's not uncommon for them to have heart issues or health issues, so I'm very grateful she is as healthy as she is because just that alone has felt like a lot.

Q: How have you overcome hardships that have come up due to Millie having down syndrome or are overcoming them?
A: It's still pretty fresh. I don't know if I'm overcoming or if I am kind of ignoring. Honestly, things are so normal right now and I've had a lot of people telling me to join this support group or do I want my cousin's

neighbors' sisters' phone numbers because they know how you feel. I was trying to be polite and do all the things at first, but it wasn't great. None of those people had a 4 month old or a newborn and I wasn't there yet, I wasn't in a place where I wanted them to tell me that this would be the best thing that ever happened to me. They would tell me a lot of the hard things they have already dealt with, which didn't get me excited for my future. So I feel like I'm kind of living with my head in the sand, as long as I can, and I have to remind myself it doesn't all come at once. The hard things will slowly start to show up and I will deal with them as they come. Maybe I will be to the point where I want to connect with all those people, but right now it just seems more scary to me to be an outsider watching what they are dealing with versus just figuring out our own path.

Q: What is your greatest worry for your child's future?
A: Bullies. Even right now people see her in the carseat and I'm like do they know they are wondering, do they wonder why she looks like that? I get really self conscious because I don't want anyone to have one single bad thought about her, like momma bear comes out so fast. I know it happens because I see it on social media, people who have older kids. Some people are not nice and I don't know how I’m going to handle it. 

Q: So that would probably be your greatest hope that people are accepting, loving, and including?
A: That people are nice. I hope that her sibling wants to be her best friend and proud of her and not embarrassed because she's not doing all the other things that all the other kids are. I  want them to be so proud of her. I want her to feel normal, I don't want her to feel like she's different. Have a full life. She might have to work a little harder to do all the things, but I want her to feel like it's an option if she wants it to be.

Q: What does a typical day look like for you guys? Do you feel like it's fairly normal as of now?
A: Yeah it's pretty normal. We have an occupational therapist come to our house once every other week, but besides that it's pretty normal.

Q: Do you have to go to more doctor visits?
A: I think eventually they will start, but again I'm just living with my head in the sand. I don't really know when it starts. I know they are more prone to childhood leukemia, thyroid issues,  and sleep apnea, but so far nothing really. We have been to the cardiologist a few times checking on a little hole in her heart that hasn't closed yet, but nothing that they are doing anything about, just watching it .

Q: How can others help support you and your child?
A: I feel like it sounds really snooty of me, but honestly I don't want that stranger's number that you know of that might know how I feel. I just want my people. I know people have the best intentions, but sometimes the amount of people trying to give me resources makes it very unhelpful, I get very overwhelmed. A big concern was that this would become our identity. Oh you know they’re the family with the Down Syndrome baby. So I just want my normal people, and they have carried me a lot.

Q: What would you like people to know and understand about Millie?
A: I feel like I’m still pretty fresh, so I don't know how to say it, but for those going through it, the darker thoughts and the things that you are feeling are probably normal, and it doesn't make you a bad mom. I kept them to myself for a long time because I'm like if people knew they would think I was terrible, but I said it once and everyone was like yeah we would be the same way. I think like the disappointment and stuff isn't bad and I think it’s more normal than some people want to admit. So far in our journey, I feel like I'm so new to this situation, that like, I think the biggest thing I want people to know is that I'm not a bad mom because I don't want her to have Down Syndrome… I know everyone says I will never want to change that about her, or it's going be the best thing that has ever happened to us. I don't know if I am there yet, I don't know what her little personality is. I don't know those types of things, so I'm still kind of to the point where I'm like, am I though, am I going to be so grateful for this in ten years? Given what I know comes with it. 

Q: Especially where she is so young you don't see her personality, all you can focus on is what you've been told.
A: What I've been told and what I see on social media, and some of it’s not great. I feel like social media is the best of everyone's world, but there are some support groups, and it almost feels like that gives permission to them to post the worst of the things. So those pages become [negative] because all it is, is everyone posting the hard things. It's a support group so you post the hard things and people rally around you, but for someone who's not there yet it's like, is this my future? I don't want to do it.

Q: Is there anything else you’d like to share?
A: As far as what I’d want people to know, it’s a lot. Some days I don't even think about it one time and other days it hits me like I never knew she had Down Syndrome. I don't know if that’ll ever change. I've heard the gap gets bigger the older they get. So is it going to get harder or am I going to get used to it, and that's just our normal. I don't know if i'll always look at her and have the thought that she has Down Syndrome, ideally I just look at her and be like oh, that’s Millie. Lean on your friends. I feel like they are probably so tired of caring for me. It was a lot of months before she got here of me being like I don't want to do this, I wish it was different, like why basically. Even now that she's here it doesn't just disappear. But if you have friends like my friends they really aren't sick of you.

Mackenzie talks about how important her people were to her through finding out about Millie, her whole pregnancy, and still now on this new journey. If you have someone in your life that is in a similar situation, take this as your sign to reach out and lift them up. There are lots of ways you can do that! You can order a meaningful piece for them from our Strong Families line, you could offer to watch their kids, or even something as simple as sending a quick check up text. 

We love how raw and truthful Mackenzie was while sharing her and Millie's story. We are so grateful that she was willing to share with us. We hope that her story can help others who are in the same situation. To carry on her sentiment, you might not be ready to connect with others who have been there, but you can know that your feelings are normal and validated. It was such a pleasure having them and their sweet family. We can’t wait to see what big things Millie will do!