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Patti’s Party and a Reason for Regan

November 6, 2017 | Uncategorized

Patti’s Party and a Reason for Regan

It’s been a while, huh? I’m sorry for the absence. Life has gotten pretty busy, as it always does around this time of year. I spent last week with my family in Houston, celebrating my mom’s birthday (her grandma name is Patti). My dad has always said, “if there’s one thing this family knows how to do, it’s throw a party.” It was a night of partying and fun, honoring the lady who gave me life, and the lady to whom I owe my ability to mother.

My mom is hilarious. It’s an ironic kind of hilarity where she doesn’t even know the moments she is funniest. She always tells me not to repeat her moments to my friends, but I never keep that promise because I would be depriving the world of a belly laugh if I did. Her love extends to the ends of the earth, and she always told me when I was a kid that I would not understand her love until I had kids of my own. I remember thinking how wrong she was because a kid can’t imagine a love beyond her parents. Now I know, and now I have but a small taste of all the emotions she’s experienced in her life as my mom. My mom has often said that she never knew what she wanted to be when she grew up, but she stumbled into her calling in raising her three kids. I’ll never be able to thank her enough, and I think our human nature is to have humility when we receive grand compliments, but the truth is my mom was born to be a mother. She laid a foundation of strength, faith, perseverance and hope for our family.

What is it about moms that they are so wise when they least realize it? I remember as a kid realizing time and time again that mom is ALWAYS right. I remember my mom helping me with math homework one evening, and she was explaining the process of multiplying decimals. I misunderstood the math lesson that day, and my mom was teaching me the correct way to multiply. I argued with her, trying (unsuccessfully) to prove her wrong. I asked her how she was so confident she was always right, and she said, “because I’m the mom, and mommies are always right.” I remember thinking ‘man, I can’t wait to have kids so that I can always be right.’ To be fair, I also remember thinking that I couldn’t wait to have kids, so I could have some help cleaning.

My poor kids.

As you might imagine, I’ve spent a lot of time talking to my mom about Regan, the whys, the hows, the day-to-day mom questions, and the final understanding of the depth of mom love. I’ve mentioned before that for every emotion I experienced, I think my mom experienced it tenfold. It shouldn’t have come as a surprise to me, then, that my mom has reflected a lot on the “whys” of Regan in our life. I don’t mean that in a “why did this happen to us” kind of way. I mean it in a “what is God trying to tell us” kind of way. I don’t think I ever thought about Regan is this perspective. I’ve simplified it to an understanding that I am called to be Regan’s mom, and called to share her love and joy with the world. I think my mom is right in that there is a deeper answer. She said on the very day we found out that Regan has Down syndrome that Regan would be her salvation. I laughed, thinking that my mom doesn’t need Regan to provide her salvation (which I could still argue to be true). But my mom’s deeper explanation the other day resonated with me. She said, “I think Regan was sent to us to teach us how to love. I don’t think I’ve loved the right way in my life.” Again, I’d argue with the second half of that statement because my mom has a love that runs as wide as the state of Texas. But I agree that I think I could use a lesson on love. I’ve mentioned before that having Regan has given me a new perspective on the world, and that certainly includes learning a deeper love. This new love is part of my new mom love, but it’s also learning the true definition of “blessed are the meek.”

I feel like I say it on repeat, but thank you to all of our framily who love us and love Regan so unconditionally. You’re a part of this very special new world and new love, and I’m so happy you’re a part of it with us.

Happy 60^th, Momma/Patti! We love you!

The Questions You Might Be Afraid to Ask

October 20, 2017 | Uncategorized

I had the distinct privilege last week to speak to my friend Tara (Hi, Tara!) and her company. They are celebrating Down syndrome awareness month, and nothing makes me happier than to hear people are celebrating Down syndrome! As I was putting together my thoughts, I wondered if anyone would ask questions. I know exactly how it is to have someone come speak, especially in a professional setting. Sometimes it can feel like –OK, lady, I sat and listened to your spiel, now just let me get on with my day. Much to my surprise and pleasure, we had a productive and positive dialogue. I am always happy to share our story, but I completely understand that it can still be intimidating to ask honest questions at the end of the day.

So it got me thinking about some questions that maybe I would have if I was on the other side of this. It’s always my goal to be honest to the point of vulnerability, so I thought of a few things that have crossed my mind and maybe yours, too.

What are your hopes for Regan’s future?

My biggest hope for her is inclusion. I know the power that a support system can give you, and there’s something to be said for having a solid group of friends. I hope that wherever she ends up, she find friends and keeps friends easily. I hope that these friends push her to keep up, help her in areas where she struggles, and afford her the opportunity to just be a kid growing up. I have other hopes for her, too. I hope she gets a college experience of some sort (there are a lot more these days!). I hope she experiences a romantic relationship at some point in her life, and I hope she grows up knowing and loving her siblings. I hope she lives a life with limited medical issues, in fact let’s just make that limited issues in general.

What are your fears for Regan’s future?

My fears are almost the exact opposite of my dreams. I fear that she’s growing up in a world that favors hate and fear over love (though the Down syndrome community makes me feel so good about the world!). I fear that she will feel different from everyone else. I hope that she knows these differences in her are beautiful and exactly what make her the wonderful person she is. I fear she won’t know success in her life. I fear for her living a life alone. I fear her siblings will see her as a burden. I fear for those who won’t treat her with love and kindness.

How has this affected your family / future family?

In so many ways, my answer to this is “not at all”. Though Regan’s diagnosis completely rocked our world, it’s now rockin’ our world in a totally new, awesome way. It has not changed our decision about how many children to have in either direction. Thought I think we can all agree, our “control” over this is somewhat limited anyways!

Did you ever feel responsible for Regan’s diagnosis?

Oddly, no. But also yes! I never had a moment of “why us” or “why is this happening to us”, although I completely understand when other families work through these emotions. I feel responsible for her, but I don’t feel like it’s anyone’s “fault” that this “happened to her”. I feel more that this is so much a part of who she is, and now so much a part of our family that I wouldn’t trade it for the world.

Would you take away her Down syndrome if you could?

Along the same lines as the above, I would not change her diagnosis. I always say the only thing I would wish to change is any hurt she experiences because of her diagnosis. Also, I would probably change her heart condition – because let’s be real, no baby should have to go through all of that.

Lesser Known Facts

October 6, 2017 | Uncategorized

I sometimes can’t believe the progress we’ve made in only a year. I’ve gone from grief and despair to complete exhaustion to absolute joy and pride. Down syndrome has rocked our world in many ways, and Mitch told me the other night, “you know, it’s OK if we have a boring year in 2018…”

October is Down syndrome awareness month, and last year I shared some interesting facts related to Down syndrome. This year, I’d like to share with you some of the lesser known facts that I am now proud represent personally.

At our first appointment with a genetic counselor, she gave us a very generic pamphlet on Down syndrome (as a parent, you never want to receive a pamphlet to describe anything about your child). Anyways, I remember flipping through it while blinking through cloudy tears through my stages of grief. In it there were pictures of precious children and young adults, a happy reminder that this community is more like those of us with (only) 46 chromosomes than we realize. I was skimming through the text, not yet able to read the details of this new information, but one little fact jumped out at me. It said “parents of children with Down syndrome experience lower divorce rates than typical families.” I literally laughed out loud. It was one of those moments that you’re thankful that your sense of humor forgets grief sometimes and takes over. I’ve read a lot about this fact since then, and there is a scientific study that backs it up. I’m proud that Mitch and I have not only survived the newborn phase (truly every parent should give themselves a pat on the back for that), but we also learned a lot about each other and about ourselves in the process. It was tough, but we’re stronger for it. I read another mom’s perspective that maybe faith is strengthened when your marriage goes through a life event that puts you on your knees, begging for God’s mercy. Maybe that’s true, and maybe it’s a combination of these things, but there’s no doubt that Down syndrome has been a big part of our marriage this year.

The other family-related statistic is maybe my favorite; it’s the acceptance rate among siblings of children with Down syndrome. In one study, 822 brothers and sisters whose families have at least one child with Down syndrome were asked their feelings about having a sibling with Down syndrome. More than 96% of brothers/sisters that responded to the survey indicated that they had affection toward their sibling with Down syndrome; and 94% of older siblings expressed feelings of pride. Less than 10% felt embarrassed, and less than 5% expressed a desire to trade their sibling in for another brother or sister without Down syndrome. Among older siblings, 88% felt that they were better people because of their siblings with Down syndrome, and more than 90% plan to remain involved in their sibling’s lives as they become adults. The vast majority of brothers and sisters describe their relationship with their sibling with Down syndrome as positive and enriching. I don’t have a sibling with Down syndrome, but I do feel that I am a better person and better mother because of Regan.

The life expectancy for people with Down syndrome has increased dramatically in recent years. In 1989, the life expectancy was just 25 years old. Today, life expectancy for individuals with Down syndrome is 60 years old! This is thanks to many factors, including the availability of medicine to those with disabilities, the education system embracing those with cognitive disabilities, and our society realizing the blessing this community is to our world.

I hope I have at least shared a small peak into the world of Down syndrome via this blog. I am happy to share our experience and happy to answer any questions in this happy month of Down syndrome awareness!

Blogiversary!

September 29, 2017 | Uncategorized

Exactly one year ago, I started this blog as a way to keep our framily up to date with medical and emotional knowledge of Regan’s diagnoses. It has been a humbling, emotional, joyful year and I hope you’ll join me in this celebration! As a way to honor my one year blogiversary, I am humbly asking you to celebrate with me and donate to a new journey I’m embarking on.

My sister Bridget (also Regan’s namesake) and I will be running the Houston Half Marathon on January 14, 2018. We are running on behalf of the charity Friends of Down Syndrome, whose mission is to create lifelong education and learning opportunities for teens and adults with Down syndrome through education, socialization, and community outreach. It is organizations like these that see the great potential in the Down syndrome community and provide the opportunities for them to become active members in our economy and society.

If you have it in your heart (and wallet 😉 ), you can follow these links to contribute to BB or me. Thank you in advance! I offer you my continued prayers of thanks in exchange!

http://charity.marathonguide.com/HoustonMarathon/Donate/PersonalPage.cfm?MID=17453&CRID=40&CID=764

http://charity.marathonguide.com/houstonmarathon/Donate/PersonalPage.cfm?MID=17455&CRID=40&CID=764

Do They Know?

September 22, 2017 | Uncategorized

Have you ever been in one of those awkward conversations with a perfect stranger where you feel like, “sheesh lady, I just met you and now you’re telling me your life story..” You feel like there’s no way out of the conversation, but you simultaneously feel a sense of pity, because why would anyone feel the need to spill her guts out to someone she just met? Lately, I am totally that lady.

I’m coming to learn that while there are many hidden blessings of having Regan, there are also situations for which I’m completely unprepared. I’m talking about situations that parents of typical children will likely never face. As I come out of the newborn fog and become more of a normal person social again, I’m finding that there inevitably comes a time when Regan’s diagnosis must become part of my introductory conversation. It’s not something that worries me nor gives me anxiety, but it’s sort of a necessary awkward bump in the road in the middle of a conversation.

When I look at Regan, I see her beautiful blue eyes, her sweet dimples and infectious smile. I don’t know what other people see when they see her. Do they immediately know she has Down syndrome? Are the suspicious and afraid to broach the subject? I’m happy that I don’t know others’ inner thoughts because I’m afraid they might be hurtful. Lucky for me and for everyone who gets to meet Regan (and I do mean “gets” because it is an absolute privilege!), she is a sweet, cuddly, smiley baby and it takes her exactly 0.1 seconds to make you fall in love with her.

But still, the topic looms like a lone raincloud on a sunny day. It’s not scary for me anymore, but I know how scary it is for other people. I totally get it because I was the same way before I had Regan. It was a world I didn’t understand and quite frankly intimidated me. I have found that there are usually natural breaks in the conversations where I am able to share our story and Regan’s diagnosis. It’s not something I can throw at people right away. I was talking to my mom about this topic just this week and we compared it to a mom saying “This is my baby – she has diaper rash!” *cue the awkward cricket chirps*. It’s funny—after sharing her diagnosis, I always expect people to say “REALLY?? I had NO idea she had Down syndrome!” I don’t know why I expect this response, maybe because I see Regan for her flowering personality and sweet nature (and not her diagnosis). I’ve never received that response. Most people nod understandingly as I spill my guts and share our journey to date. I have yet to be able to share her story without crying, and suddenly I become THAT lady who doesn’t know how to stop talking.

I think most of the time, people mistake my crying for sadness. I quickly explain (more talking from the lady who overshares) that I don’t cry for grief, though there were days of those tears, too. I cry because I can’t contain the joy I have and I’m acutely aware that without the marvels of modern medicine, we would not have her with us. The only sadness my tears carry is for the possibility of missing out on this fabulous life with her.

Fairly quickly after finding out I was at high chance of having a baby with Down syndrome, I knew I had to get comfortable talking about it. I forced myself down (what was then) an uncomfortable path because I had to blaze a trail for Regan in this world. Now that Regan is blazing a trail of her own, my calling is to share the joy of Down syndrome with the world.

Hello world!

September 19, 2017 | Uncategorized

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