Welcome

I want to start this post by noting that if your heart is yearning for a child in any capacity, my heart is with you every day. I don’t know your pain, but I lift you up in my heart and hope that you feel joy and peace in some form today.

There is this beauty in the gift of time that can make one forget the pain of the past. When I think about my pregnancy with Regan, I remember it as an easy one. It was traumatic to say the least, but physically I felt great. This pregnancy has been so very different.

I can’t speak for other women, but it seems there is something about having Regan that has made me more cautious this time around. My awareness of the preciousness of life is heightened, and I now have a daily reminder that life is a gift to be treasured and not taken for granted.  The first several weeks of my pregnancy were exciting but I was cautiously optimistic. Mitch and I waited a longer time before sharing our news, and my anxiety started to kick in quickly.

For those who aren’t aware, we (by chance more than anything) elected to do NIPT (non-invasive prenatal testing) with Regan. It’s a simply process by which they draw mom’s blood and can separate the DNA sequences to determine baby’s chances for chromosomal abnormalities/differences. This topic is highly controversial, as some argue that these screening tests increase a family’s decision to end their pregnancies. I’m going to share our perspective to shed light on the positive impact these screening tests can have. We had it with Regan and it allowed us to process information, transfer our prenatal care to CHOP, grieve, grow and learn about Down syndrome while we waited for our precious child. I believe these screening tests can be an opportunity for us to educate the parents-to-be on the reality of life with a child with Down syndrome, which is beautiful and full of joy!

I got a little off track there, but now you understand why we chose to do the NIPT screen again with baby 2. Between waiting to have the screening done (I had to be 11 weeks along before the screen is accurate), waiting for the screen results (it took 8 days for the results to come back), and processing the “what-ifs” in the meantime, my anxiety this pregnancy has been higher than I’d prefer. The screen came back “low risk” (their words, not mine) for any chromosomal difference. I was at ease, but I’d be lying if I said my anxiety has completely dissipated.

I don’t consider myself to be a high anxiety person, and maybe that’s why these feelings feel so out of character for me. I’ve spent some time wondering how I’d react if we have another child with special needs, and I think no one can be sure how they’d react to a situation until you live it. Regan has obviously opened our eyes and hearts and we know how much joy she’s brought to our family, but there is still a part of my heart that longs for a typical child, too. I feel guilty even saying that, but I hope y’all will understand what I mean. At least right now, that seems to be the new path we’re on (the typical child path, that is)! Whatever joy comes our way, we are ready to embrace it with open arms.

Howdy, friends! I’ve been a little MIA lately and I’m finally in a place where I’m ready to share why! Our little family is growing by one in March 2019! We are so excited to share with everyone this very special news. Growing a family is not something I ever want to take for granted – life is so very precious at all stages!

Needless to say, I’ve not been feeling 100% this Summer so I took what time I had to rest, recover and relax. Isn’t that what Summer is about after all? Regan and I took a trip down to Dallas (and Houston!) and had the wonderful opportunity to attend the National Down Syndrome Congress. I went with high hopes, but honestly did not know what to expect. Friends, I was BLOWN AWAY. There are so many incredible resources for those of us in the Down syndrome / special needs community, and I got but a small taste of those. It’s my mission to always be one step ahead of the game in Regan’s life, specifically when referring to her educational rights and needs, her healthcare, and her overall development. My mom and sister went with me, and they were a great support system to attend conference talks and help me with Regan! It was a fun little girls’ trip, and I was SPENT by the end of it! It was a wonderful whirlwind of information and I’ll make it a priority to attend as many years as I can. If you are a parent or family member in the Down syndrome community OR if you work with those with Down syndrome in any capacity, I highly recommend looking into this conference. I was particularly impressed with the number of therapists, teachers and medical professionals who attended in addition to parents and siblings of those with Down syndrome. Raising a child with Down syndrome is a huge team effort, and it feels so great to be supported by those who will work with my child in the future.

Regan has been flourishing this Summer! Summer is such a great time for development, in my opinion. Even when you’re not in school, it feels like a more relaxed time when the days are long, and it seems there’s all the time in the world to play. Regan is still furniture cruising and bear crawling (no steps or free-standing yet), but we are working on it! She moved quickly from sitting (remember how LONG it took us to get to that milestone?), and then in the blink of an eye she was furniture cruising. She is at a little bit of a plateau but we are working on building strength and treasuring the time at this stage. Regan is in the middle of a BIG leap in personality and cognitive development. We’ve been doing sign language with her since she was about 6-9 months, and in a matter of a couple weeks she went from doing maybe two signs to almost 20! Although her speech is a little delayed at this point, it’s so great that she’s able to communicate her needs to us. Her receptive/understanding language is right on track for her age, so the sign language functions as a bridge until she’s able to start talking effectively. [It’s common for children with Down syndrome to have speech delays due to some cognitive delay, but also because of low muscle tone. The tongue and mouth muscles are the same as Regan’s other muscles in that they’re a little “looser” than a typical child, which makes it physically harder for her to talk]

I realized I haven’t given a tooth update since my trauma at the last dental appointment! Regan’s teeth are ALL coming in at the same time! There are almost no bare spots on her little gums, and her teeth take their time coming in. She has several molars, two top and two bottom teeth and the rest are not far behind. This has helped with her eating, although she’s always been a great eater (good genes in that area :D). We are STILL working on drinking from ANYTHING but a bottle and my friends, we have one strong-willed girl. She LOVES her bottle time and still refuses to hold her bottle or even really attempt to drink out of anything else. We are working on it and hopefully she is drinking from something other than a bottle before we go to Kindergarten. Any tips and tricks are greatly appreciated, and yes, I feel like I’ve tried everything. Mitch finally moved our cup cabinet for Regan because it was starting to bust at the seams with the number of different cups we’ve tried.

A brief pregnancy share for inquiring minds – we again did the NIPT screen, which is a non-invasive prenatal screen. It screens the mother’s and fetus’ DNA for chromosomal abnormalities. If you remember, this was how we discovered Regan’s bonus chromosome. Our results are in and this baby is considered “low risk” for a chromosomal abnormality, meaning there is less than 1:10,000 chance for a chromosomal difference. I have been asked if there will ever be a time where I’m told there is NO chance for a chromosomal difference, and I have to say this is when I know how much Regan has gifted me. There are very few times in life when we have any guarantees, and Regan has taught me so much about how there is beauty in the unexpected.

I have and have had a lot of emotion this pregnancy, and I plan on sharing more next week. I couldn’t wait to share the most exciting news, though, which is Baby Vowler due March 10, 2019! (We are not finding out the gender – so get your guesses in now!)

This weekend marks Regan’s eighth trip where we will be flying together. I’ve done it solo with her a few times, but she’s a lot more grown up this time around, so it’ll be interesting to see how we do as a team. Vacations with my family hold some of my fondest memories, so it’s important to me that Regan knows the beauty of travel. I hope it’s one of many things that helps grow her sense of independence and confidence. Some of my friends have asked what it’s like to travel with an infant/baby/toddler alone, so I thought it might be fun to share some insights I’ve learned over the past few trips.

1. The most important thing to remember throughout your travels (specifically on your flight) is that you’ll likely never see these people again in your life. I always tell myself before I get on the flight that if poop hits the fan (maybe literally and figuratively), not to worry because these people are strangers to me and will stay that way once I’m off the flight. It can be easy to get caught up wondering what other people are thinking, but you have to remember WHO CARES. Let me tell you – there’s nothing more alienating than walking onto a flight with a baby in your arms. Not one person on that flight wants to be next to you, and it’s written on every single one of their faces. With that said, I’ve also never experienced more compassion than those who’ve helped me in my travels with Regan. I’ve had men, women and other children go out of their way to lend a helping hand and it touches my heart more than they know. I’m acutely aware of the fact that it can be scary to offer help, especially to a special needs mom, and each of those people have earned a star on their halos! On one of my first flights alone with Regan, I hadn’t quite worked out all the logistics and I wheeled her in the stroller all the way down the jetway, not realizing that her stroller would not fit in the aisles of the airplane. She couldn’t sit independently yet, so I had no way of holding her while collapsing the stroller with only two hands. I asked one of the flight crew members to hold Regan while I got my bags straight and she responded so enthusiastically, “I was hoping you would ask me!” It completely made my day. Never underestimate the value of kindness to strangers.
2. Check everything possible. The more bags you check, the easier your day will go. Ideally, you’ll also have people helping you get into and out of the airports. If you do not have available help (I’ve been there, too), try to pack as few bags as possible since you obviously only have two hands. I always pack Regan’s bag in mine so it’s one less thing to carry, even if it’s just to the check-in line. I limit my carry-ons to Regan and one backpack. Remember the fewer things you’re carrying, the less likely you’ll be to lose something along the way.
3. Remember that (more than likely), you can buy anything you need where you’re going. Unless you’re going on a mission trip or travelling to a third world country, you’ll likely be able to purchase anything you forget. Maybe not the ideal solution but eliminates the need to pack everything you think you might This is especially important to remember with a baby who “needs” everything under the sun.
4. Splurge on items that will reduce stress. This is a little subjective, but there are certain items that are worth splurging if you feel it will make your travel easier. If you’re a frequent baby/toddler flier, I cannot recommend the Doona stroller/carseat enough. I found it after Regan was already more than a year old, and I wish I would’ve discovered it sooner. Click here to learn more, but in a nutshell it’s a carseat and stroller combo that requires no attachment/travel system that most carseats require. It collapses into itself for easy ONE-HAND function. Another splurge item for me is booking Regan her own seat when I am travelling alone and/or if the flight is inexpensive. Keep an eye on your flight to see if the price drops enough to make it “worth it” to buy an extra seat for your little one (this is another subjective one to determine if it’s worth it to you and your family). If your babe is under age 2, you’ll have to call the airline to book the flight. BONUS! Doona is an FAA-approved carseat.
5. You can bring baby food/formula/breastmilk through security. TSA does not enforce the same liquid requirements for breastmilk / formula when you’re traveling with a baby, so no need to panic! I’ve gone through plenty of TSA lines with a cooler of milk and never had an issue. You’ll be stopped for them to run a test of the milk (don’t worry, they won’t open any sealed containers), so just plan for a little extra time for an agent to test the liquid.
6. It’s only a limited number of hours in a space full of strangers, so just roll with it! Sometimes this is easier said than done. On one flight (I hadn’t bought a spare seat for Regan), and in a combined effort to hold Regan and make a formula bottle, I made a huge poof of formula that spilled all over the armrest and narrowly missed the poor man sitting next to me. I was a bit of a disaster and felt so bad for the man, but he was so gracious and did not complain (at least that I noticed). I profusely apologized and (spoiler alert!) I never saw him again.

All this to say, the travel is ALWAYS worth it! Despite the inevitable exhaustion, I’ve never regretted taking Regan on our trips. I’d be doing the world a disservice if I didn’t share her with it!

This weekend, we’re headed to Houston and then Dallas for the National Down Syndrome Congress. My mom and sister will be joining me as we continue our education on all things Down syndrome! It was one of my goals last year to make it to this conference, and I’m really looking forward to learning the latest and greatest about this extra chromosome! More next week on things I learned along the way – happy weekend!

Friends, it’s been just over two years since we received Regan’s diagnosis and I can’t believe how quickly the time has flown (minus the three months leading into her heart surgery, which I’d be happy not to relive). Shortly after processing the news, I spent some time focusing on happiness and I listened to the podcase Happier with Gretchen Rubin.  She spent years studying the concepts of happiness for her book, The Happiness Project. Each podcast discusses small life changes to make to increase your sense of happiness – I encourage y’all to listen! You won’t regret it. Anyways, certain pieces of each episode have stuck with me since then. In one episode, she discusses about her family’s communication, and how at a certain point in her life she found that she and her family members had nothing to talk about. Since they were living throughout the country in various time zones (I can identify) and busy schedules interfered, they each made a commitment to participate in an email chain where they discussed their daily lives and little family updates. She found that once they started the lines of communication, she started having more frequent conversations with each family member, despite the time difference and busy schedules. It’s this concept that “the more you talk, the more you talk.” That’s a little bit of how I’ve felt the past few weeks with the blog. There is so much going on, and yet I feel there is so little to say. So let’s talk more, shall we?

We’ve been enjoying the summer months with our precious girl, who has turned out to be quite a water baby! She loves splashing in the pool and walking along with her little floatie in the shallow water. Regan is so very close to walking! She’s cruising along the furniture, which means everything is fair game now in our house. Just yesterday I was cleaning coffee from the couch, the walls, the CEILING, and the living room door frame. I was exactly two steps away from her and I couldn’t beat her to my coffee mug (which was thankfully full of room temperature coffee from aforementioned chasing after Regan). Regan still loves playing with Walter, though they have their sibling rough-housing at times. She is just beginning to walk with assistance or a walker; all her therapists are SO pleased with her progress! Through Occupational Therapy (fine motor skills), we are working on self-feeding with a spoon. She’s pretty accurate, but her follow through could use some work (resulting in a lot of spills and more dropped spoons than I can count – we are staunch believers in the five-second rule in this house). Regan is eating just about everything now, which is revolutionary for us! Still no steaks or raw broccoli, but those are overrated anyhow.

And on to the MOST exciting news in our lives – Regan was chosen to be a 2018 Champion for the Children’s Hospital of Philadelphia (CHOP) Buddy Walk! I cannot even begin to say enough good things about this hospital. Walking through the doors feels a bit like going “home.” The CHOP Buddy Walk benefits the Trisomy 21 (Down syndrome) Clinic, a beautiful team of medical providers, therapists, social workers and those dedicated to the Down syndrome community. We’ve been on the receiving end of so much love from this team; it’s our honor to help support them! This clinic provides medical care and resources to the Down syndrome community, and they are always on the cutting edge of research. They’ve given me knowledge and empowered me to be an educated advocate for Regan.

How can you help, you ask? If you’re near us, you can join us at the walk on Sunday, October 7! It’s a day of celebration for the Down syndrome community and a way for us to show our love for CHOP and the T21 Clinic. If you’re not able to join us for the walk, you can show your support via donation to this wonderful cause! I’ll include a link below where you can register to join our walking team OR make a donation. Thank y’all for all the love!

Team The Path We Travel

(Click above to join our team!)

I remember vividly trying to beat my parents to the mailbox during progress report time. I’m sure parents get grades emailed these days, but when I was in high school all our grades got snail-mailed to our house. It became a running “joke” (funny/not funny) that progress reports aren’t “real.” My siblings and I made our best efforts to convince our parents that by the time the progress reports made it to our house, our grades were already improved, and to pay no attention to the grades on the progress report. I’m still not sure whether they believed us, but I think we wore them down with our tactics to a point of indifference.

It can be exhausting to convince ourselves that we need to make progress, constantly grading ourselves on our current goals – weight loss (ha!), cleaning and organizing, career orientation, the running list of goals in our minds seems to be ever-growing. I don’t know about you, but I can be a little hard on myself at times. This is true in my role as mom, too. I’ve mentioned before that constant thought in my mind of ‘am I doing enough?’ I never want to put Regan in a position where I find myself thinking ‘I wish I would have done X better or sooner.’ But I’ve learned something along the way – no matter my efforts, I can’t control everything, and there are times that call for relaxation and just enjoying the progress we’ve already made.

I made a conscious decision to take a break from therapy with Regan for a couple weeks, and unconsciously took a little break from blogging, too. In the time of our break, I think we’ve both been a little more relaxed and I’ve had the opportunity to let her grow and play with a little less structure in our lives. I suppose it should come as no surprise to me that she’s made some BIG leaps in the past month. We’ve converted to 100% table food, she’s able to self-feed quite a bit, she’s pulling to stand on EVERYTHING, she’s four point crawling and bear crawling, she understands several words and can sign two (all done and more), she is shifting weight in standing position (and hopefully will start furniture “cruising” soon!). She as TWO teeth! My pride for her grows every day.

Thank y’all for continuing on this journey with us and for allowing our little break to appreciate our progress. Back to our regularly scheduled programming!

The best gift I ever received from my mom was her ability to teach me how to love. How to love others, how to love my parents and siblings, and how to love those who are sometimes hard to love. She taught me perseverance and patience, especially at times when those two virtues are the most difficult to express. My mom is in her prime when she is in a teaching role, and I’m trying my hardest to fill her shoes in my job as “momma” to Regan. Since she is the best teacher I know, I want to celebrate her by sharing her thoughts. I asked my mom a few questions about our life, and I hope you enjoy her responses (below) as much as I did. Happy Mother’s Day to all the beautiful women in our lives. We each have our roles as “mother”, though not always in the traditional sense.

 What were your first thoughts when you found out you would have a grandchild with Down syndrome?

After the initial shock? I was immediately worried about you and Mitch. I wanted to be there. I wanted to comfort and hold you. I wanted you to know that everything would be ok. I really didn’t have too much thought about Regan’s diagnosis. I just wanted to be able to take away all your pain, or to take on all the pain you and Mitch were feeling. I guess you never lose that motherly feeling of wanting your kisses and hugs to be able to make things “all better.”

How would you compare your role as a grandmother to your role as a mother?

Grandparents have the unique gift of knowing pure delight from their grandchildren. We know that these precious gifts from God are on loan to us, and we don’t have the worries of parenting them. We don’t have the silly worries of discipline and homework and grades and bedtime and sports and friend problems and keeping up – we get to be their unconditional pals! And we get to do it on their terms, and we are ok with that. And we get to spoil and love and nurture with no strings attached. Everything they do is totally awesome in our eyes! It’s a wonderful thing! I remember G’ma Carrie [my great grandmother on my dad’s side] telling me that I wouldn’t really know true, deep love until I became a grandmother. And I think she was right! I believe becoming a grandmother has helped me better understand the love of God our Father. I believe He wants nothing (nothing!) more than for us to let Him love us. And I feel that way about Marie and Regan and Charlie. I only want them to let me love them. My role is to love them unconditionally without parenting them.

How has watching your children become parents changed YOUR role as a mother?

 I hope it hasn’t changed my role. I hope I get to keep being your mom, that I get to keep kissing the hurts, wiping the tears, jumping for joy and belly-laughing with you!! But now I get to share those with you as you share them with your children. A double-blessing, right? Because as my child goes through it with their child, I experience it doubly. And it’s all worth it! Both the joy and sorrow. I wouldn’t to miss out on either.

How would you describe your mothering style while we were growing up?

[[Laughter]] Maybe you should answer this one.

My mom has this beautiful gift of knowing exactly when to lead, when to follow and when to carry her children. There are seasons of life that require each, and she’s the one who taught me that. It’s also not always what we ask her to do, it’s what we need her to do. My mom encouraged us to take charge of our own lives. As an adult and a mother now, I can see how much it empowered us as children and young adults but can also see that it must have taken leaps of faith from her many times. I think of when Dan (my brother) was at West Point in his first year just days after 9/11, and throughout his tours with the Army. I can’t imagine the despair my mom (and dad!) felt with their child on the front lines of danger and limited communication. I think of sending BB (my sister) off to Spain for 6 months at a time before cell phones and internet were easily accessible during travel. I’ll never forget a night while I was living in D.C., talking to my mom just before getting on the metro and my mom saying, “just be careful and always be aware of your surroundings.” I laughed it off at the time, but now I understand how she must’ve felt with all three kids spread across the country (and sometimes world), with nothing but blind faith. Nevertheless, she continues to encourage us to spread our wings and share our gifts with the world.

What is one of your favorite memories as a mother?

First, I have very clear memories of holding each of you for the first time. Those are my most treasured memories. Joy beyond joy! But in our day-to-day life, my most treasured memories are the times that you, BB and Dan would get all silly and tickled at each other. And the laughter and giggling! There were so many of those times! And now, being so far apart from one another, those are the moments I miss the most. During those times, I felt a joy and a peace and a love. And I knew that if anything happened to Daddy and me that y’all would always be there for each other, that you loved each so much and would take care of each other. That’s always been my prayer. That y’all would love God first and foremost and that you would always love each other. My prayers have been answered.

Has having a grandchild with Down syndrome changed your perspective? If so, how?

Changed my perspective on motherhood? I don’t think so. I had to think about it, so obviously not. I really don’t think too much about Regan having Down syndrome (is that a bad thing?). My interest and concern for her is no different than my concern for how Marie and Charlie are doing. I delight in her milestones and worry when she is not well. But I feel the same way about Marie and Charlie. [Marie and Charlie are my niece and nephew]

I do think Regan’s diagnosis has made me more aware of the needs of parents and children. And I am more aware that it is each of our responsibilities to care for all children, to be sure they are loved, cared for and nurtured. I believe I will now become more involved and vocal, especially more the marginalized.

What advice would you give to young moms?

Enjoy your children like their grandparents do! Allow them to become the best version of themselves through unconditional love. Don’t worry about silly stuff, and most stuff is silly.

Last thought – I could not have become a mom without Daddy. And I am so grateful for his love. You know the sayin, “the best gift a father can give his children is to love their mother.” Daddy gave y’all a fabulous gift. He has given me immense love.

Happy Mother’s Day to all women. I also want to acknowledge that this day carries pain for many women. Pain of loss, suffering, disparity, and sometimes pain we don’t understand. I pray these women experience a calm and peace on this day despite their pain. Thank you to all the women in my life who’ve taught me love, kindness, gentle and unconditional love. Happy Mother’s Day!