PJ B-DAY EDITION!
Last year on this date, we were in the hospital welcoming Parker John Hollenhorst into our world (and yours). It was a magical time, one I remember like it was yesterday. Vividly, I recall the entire experience, but more than anything I remember the joy. He came 5 full weeks early, so we weren’t ready, but we were more than prepared and thrilled. Every single of the last 365 days has been a joy and a blessing. He’s the sun in our sky and we’re so in love with our little man. He’s come so far in that year and he’s full of surprises and excitement every day. He’s so massively full of life (and waffles) that it makes me smile just thinking about him. (Can you tell how much I like him?)
Yesterday he had his 1 year check-up at the doctor and he’s doing great and he’s finally in the growth chart!!! (He was woefully undersized for several months and fell below the charts for size for average kids - glad to say he’s now well within the normal range for height and weight, which actually puts him on the high side for kids with DS). We’ve been lucky and he’s been cleared of many of the scary health issues that are common with DS. His heart is great and free of defect, something super common amongst DS kids. He’s proving to be more “normal” than we may have expected. He has an occupational therapist that comes once a week and a physical therapist that joins her every month or so. Parker’s at a typical pace in some of the physical growth and gross motor skills for kids with Down Syndrome, even ahead in some categories. The physical disabilities of DS are the constant learning experience for me. I had no clue the many, and sometimes severe, physical challenges that face kids with DS. On the developmental side, he’s doing so well. He can say some words, he can dance, he can play peek-a-boo, shake hands, clap and a lot of other little things that may not seem like a big deal, but for him do be doing them at this age puts him ahead of the game. It’s inspiring and I get emotional and beam with pride. I’ve said it before, but one of the greatest things about this label he has is that it comes with a list of things he shouldn’t be able to do and when he does them, it makes them so much sweeter.
While he could be a better napper, he’s following in his big sister’s footsteps and prefers to be up all day so he can maximize his time with mommy and his sister ;-) Other than that, he’s a super cheerful, adorable and fun kid to be around. He’s playful, he loves music, he loves books, he can’t get enough of his big sister, he loves our kitty cats, he LOVES food (he pounds waffles like a frat boy with the munchies) and he’s just perfect in every way. He’s my constant reminder of how great life is when you just slow down and enjoy it. He’s taught me a lot.
I’ve learned more about myself in the last year than in the 32 years before it combined. I truly believe Parker was sent to change the world…my world at least, and he’s done so. He’s just given me a new perspective on everything and changed my life so much for the better. I almost can’t remember life before him because it wasn’t as rich and colorful.
I thought it would be good to look at some words that have been integral to our journey and share what they mean to me now that I’ve had one year with Parker to help reshape my perspective. Here goes…
I have had a lot of happiness in my life. It’s a great feeling, but I think of happiness as a temporary state that can leave as fast as it comes. I’ve had many struggles in my life emotionally and happiness was a place I didn’t find easily for many years. Joy, on the other hand, is a more complete and steady feeling. Since the day PJ was born, joy has been the leading emotion in my life. You simply can not be around him or look at his face and not feel it. It’s magnetic, energetic and completely overwhelming. It’s also contagious and the joy he reflects onto others adds to my joy. He lights up every room he’s in and he spends most of his time in the rooms of our house, so it’s a house full of joy. Good days and bad days will come and go (and certainly have came and went), but joyful days are always present and I always make sure and take time for that joy because it’s good for my soul.
I’ve mentioned in previous stories about the almost out-of-body experience I had when Parker was first diagnosed and how the power of positive attitude controlled me. That positivity has stayed with me in all things Parker and (luckily) most other things, as well. Much of my life before parenthood was riding high on success in sports or other endeavors, but when things didn’t go as I wanted them to, a wave of negativity would wash over me and cripple me. I look back on so many opportunities I squandered just by taking the wrong approach. Negativity is hard to avoid sometimes. It would have been easy to be negative about our situation. We could have just as easily seen all of the downsides and lived this last year with a chip on our shoulders. Thankfully we didn’t because we would have missed out on the absolute best things in life. I know Parker’s life will be amazing because seeing it as such is 100% within our control. Things may happen to us or him, things we can’t prepare for, but we can react the right way and we’ll make it through anything. I’m positive of that.
I’m not a big religion guy. I’ve been jaded by my catholic school upbringing and my exposure to a world of other religions. I don’t know that anyone is right or wrong, nor do I intend to argue that they are or aren’t, but I do know with certainty that there are higher powers all around us. I put a lot of trust and faith in God to help me through my journey. We prayed a lot leading up to Parker’s birth - that he would be healthy and happy. That prayer was answered. We give thanks everyday for all that we’ve been given because it’s been an awful lot. I know there is a reason for all of it. I have faith that we’ll get through anything and that whatever comes our way was part of the plan. The proof shows itself often. Since having parker (and me and my big mouth sharing our story to the world), we’ve been able to connect with a lot of people, but most notably MULTIPLE couples expecting a child with Down Syndrome. Through some person or another, they found their way to our story and we’ve been able to connect with them and share things we’ve learned and help them in any way we can to find the same joy and peace that we have found. Those meetings don’t happen by chance…that’s a higher power bringing us together…through Parker! I have faith that more greatness is in the cards…you gotta have faith (cue George Michael…or Fred Durst, I guess)
I hesitate to use the word “acceptance” because the connotation can be a little negative like “I’ve accepted the fact that my kid isn’t the one I wanted”. I don’t feel that way at all. I’ve said it before, I don’t want my kid any other way than how he was given to me. He’s mine - all mine. I like to view acceptance as an agreement to take on the challenge. I accept the challenge of being the best dad I can be. I have a very different kid in Parker than I do in Lydia. Lydia is infinitely more challenging, lol. We joke that we have a special needs child…and then we have Parker. The specifics with which she orders PB&J are at diva-esque levels. Joking aside, Parker’s life will present a different set of challenges and circumstances for our family, but we accepted that challenge. We accept that some people won’t give him the chances he deserves and some people will look at us funny because we have a son like him. I accept that some people are unchangeable, but I also accept that challenge that Parker has the power to change and that’s been evident since day 1 and his impact is felt every time he’s around any of you. All of you who’ve accepted the invitation to partake in the journey haven’t been let down. He’s a rock star and always will be. We know for some people it’s hard to accept a kid who’s different like he is. Some parents even hide their kids away from fear or shame. That’s not a problem with us whatsoever - my Facebook and Instagram are pretty clear examples. We are going to keep showing him off and being proud of him…accept that!
This is a pretty popular word in the world of parenting. I think we all learn patience in various degrees depending on how cooperative our kids are and how much they let us sleep ;-) Those patience lessons are unavoidable. The patience I learn everyday with Parker is more about living in the moment. Down Syndrome presents a lot of different obstacles for a child and ultimately gives them a different timeline to achieve certain milestones and goals. Liddy, as most of you know, has always been way ahead of the game. She’s too smart for her own good sometimes, but it’s been exciting to see her grow up and mature so fast. Parker’s timetable is markedly different. It’s not worse at all, in fact, I think it’s better. I’m learning to appreciate and cherish the little things in a way I am not sure I ever did with Lydia. Many kids his age and even younger are walking and doing many of the physical things that he’ll struggle with for awhile yet. I’m so proud and impressed with so many of the things he has accomplished because I’ve seen the growth, and even though it’s a bit slower to come for him in some instances, it’s still magical to see him accomplish a goal and reach a milestone. Patience has provided me the opportunity to cherish those moments and really appreciate the small steps. I CAN wait for the next thing to happen…I’ll just be patient enjoy this moment!
This word is used and misused more than a lot of words. I love chocolate. I love guitars. I love [insert TV show name here]. True love, the kind you can’t quantify, is a completely different kind of love. I’ve loved Michelle for almost 20 years. She’s been my best friend and companion since we were practically kids. That love is powerful and magical, but it doesn’t compare to the love I learned the moment Lydia was born. She’s part of me, she’ll rely on me in a way that no one else can and she needs me in a way that only nature can dictate. That love is beyond my control. With Parker, it’s the same love, but because he’s got a certain label, the protective nature of that love seems heightened for me. Also, though, the pride in my love for him is amplified. Daily I have at least one moment where I get teary-eyed just thinking about him. I think about how absolutely magical his smile is or how much his eyes light up when I come home each night and I can’t wait for that moment. He’s a part of me and I feel it. When we found out he had DS, we were emotional as is to be expected, but when it came down to it, Parker is half of me and half of Michelle and completely ours. He’s my son and my gift to the world. I’m so overwhelmed with love for him that it hurts. He’s every song lyric about love you can think of. He’s just such a wonderful spirit and a wonderful life and I’m so glad he’s ours to love and we can share him with all of you who show love for him, too. He has a certain way of looking at me and smiling that I feel so much loving coming back, too, and that’s the greatest feeling ever.
Friendships are a delicate thing and that word has lost a lot of meaning thanks to Facebook. My faith in friendship has been restored thanks to Parker. You connect with people in your life and sometimes those connections run deep, sometimes they are fleeting. Sometimes they just need a bonding agent. Parker is that for us. We have great friends. Those relationships that have been fixtures in our lives have grown stronger and better because of him. He’s a reason to stay in touch with those who are further away and he’s a reason to stay even closer to those who are at arm’s reach. You just want to be around him and I know that won’t change. He’s also blessed us with so many new friends. We’ve met a bunch of people who have been impacted by our story. Some have kids or family members with DS, but most haven’t. Most have just seen a family with heart and joy and wanted to join in (at least that’s how I see it). That’s been such a blessing because when things have ever seemed difficult or unhappy, we’ve got such a legion of supporters that we get lifted up very quickly. You need good friendships and Parker’s starting off with a bunch which I know will last a lifetime.
Blood makes relatives, but love makes a family. Our family extends well beyond our gene pool. There are so many of you that have become extensions of family. Love connects us and the love of Parker is a big part of that love. Parker also deserves to get all the love he can from family. A lot of people can get scared off when having a child with special needs. We knew that our little family needed more members, more love and, let’s face it, more cuteness ;-) After PJ was born and as a symptom of her ovarian cyst that ruptured, Chelle had surgery and the doctor informed us that our window to having more children was closing rapidly. We always wanted at least 3 kids and Parker absolutely deserves to be a great big brother. I had envisioned our plan to include having that 3rd kid sometime in late ’15 or ’16. I think the logical part of both of us would have planned it that way. God had different plans for us, though, and Chelle apparently had a feeling that the time was right because magically, we conceived baby #3 just weeks after her surgery. It was unexpected, but I remember coming home that day and seeing the pregnancy test on the counter and feeling relieved, not scared. I know how hard it can be to have kids. I’ve watched so many people that we love trying and praying. We’ve been more than fortunate on that front, but the possibility of difficulty and maybe not being able to give Parker a little brother or sister worried me. That baby girl is due any day now and I am simply ecstatic that our family will be growing and, who knows, maybe another one is in our future some day.
Saying thanks is easy some times, hard others, but necessary more often than we do it. I’ve consciously taken time over the last year, more than any other in my life, to say thank you. Like every good athlete during the post-game interview, I gotta first thank God up above ;-) Truly, though, and in the spirit of that Faith item above, God is great. I want to control everything in my life. I want to dictate outcomes and know results before things have happened. In the last year, I don’t feel that same urge to be in control. I am thankful that something more powerful and bigger than me is calling some of those shots. I trust that I’m given what I need to get through anything and thankful for the opportunity. Beyond that, all of the people that are part of our lives, from our highly-involved and overly-generous parents, to our best and closest friends to those new friends, to the many, many people we’ve never even met who live across the country and across the world who have impacted our lives over the last year, we are so thankful. From the amazing emails, the letters and even the “likes” and comments on Facebook and Instagram - knowing all who are with us is humbling. I’ve often felt weird over the last year, too, because I think by virtue of having a kid with Down Syndrome and not being shy to share our story and my gushy love-fest for him, I’m judged to be a much better person than I am. The benefit of that misinterpretation is that I strive everyday to be as great as many of you think I am. I had an old classmate of mine call us “Family of the year/decade/greatest family of all time-type family” and while that is flattering (and completely untrue, lol) it energized me to try and be just that. I know people are watching. I know people are caring. I know people are learning from us. We have learned so much from our mentors on this journey and we owe it to others to pay that forward. I’m just thankful we’ve had so much involvement and participation. When I first wrote that letter introducing Parker last year, I invited anyone who wanted to join us to come along on the journey. The train’s been rolling down the track a whole year now and is overflowing with riders. Thank you so much for being one of them.
All our love and thank you all for readin ;-)
We invite you to keep up with us. My instagram is a volcano of cuteness, so follow me there for sure. Friend or follow me on facebook if you want, also, if you want to keep up with our fam. I'm certainly not shy to post ;-)
Thanks again for reading. We love all of the support and involvement from everyone. Don't ever hesitate to reach out or stop by!.
- Cory & Michelle & Liddy & Parker & (baby girl any day now)
PS: If you need to catch up, read the original birth announcement story or the 6 month update, 9 month update, and I have been blogging since the day we found out about Parker's diagnosis, so if you are interested in checking out the whole story and getting caught up from the very beginning, go to endlessupside.com/our-story/ to get started.