Celebrating Quinn year 9

 I was talking with a girlfriend this past weekend about Quinn and all we've walked through the past 10 years and she said, "Ali, I couldn't do it. It would've destroyed me." And my response is, "Yes, you could! You never know how much you are capable of until you have to do it." I mean, it did destroy me! It would temporarily destroy any emotionally healthy human! But then you have a decision to make. You have to shoos your hard. I saw this quote recently....

"Marriage is Hard. So is Divorce. Choose your hard.

Obesity os Hard. Being Fit is Hard. Choose your hard.

Being in debt is Hard. Being financially disciplined is Hard. Choose your hard.

Communication is Hard. Not communicating is Hard. Choose your hard.

Life will never be easy. It will always be hard. But we can choose our hard. Choose wisely."

See, picking up the broken/destroyed pieces of our former self daily and choosing to put one foot in front of the other was hard. Choosing to do Random Acts of Kindness on our Deceased Daughter's bday each year is hard. Choosing to seek the heart of God with a broken hear is hard. But you know what else is hard? Becoming a bitter/worse version of yourself. Staying in bed crying the entire day. Being without God, without hope. Those are all hard too. Life is hard no matter what. To me it was a clear choice. I know the life I want to live and I'm not going to "let life happen to me", I'm going to play an active role in this life I've been given.

I know it probably seems overwhelming & I will be the first to tell you I had so many moments of being overwhelmed. It seemed too large- like a mountain standing in front of me. I've always loved the analogy of moving mountains and wondered what it would look like for God to move mountains. But in the process I have a different perspective on mountain moving. I think very rarely are mountains moved all at once. Do you know how you move mountains? One stone at a time. Being faithful in the small acts.

"Truly I tell you, if you have faith as small as a mustard seed you can say to this mountain, 'Move from here to there', and it will move. Nothing will be impossible for you."                 -Matthew 17:20

So what does this journey look like 10 years later? I'm still moving stones, but they're not as heavy as they used to be. And if you've ever did a Random Act of Kindness in the last 10 years in Quinn's name you've taken some of the stones too, lessening the load. You continue to be my mountain movers.

Celebrate Quinncidence Year 8

Ever since I can remember, I’ve been a story teller. The best stories are the ones that feel like all hope is lost, where there is so much to overcome and yet the character perseveres. I hope that’s what you take away from my story. We had our first child March 12, 2012, a beautiful baby girl named Quinn. On July 21, 2012, just shy of 5 months old our daughter passed away of SIDS. SIDS stands for Sudden Infant Death and really could just be called IDK for infant death. There was no rhyme or reason and it all just felt so random and senseless. It was the part of my story where my world went dark. And when March 12, 2013 came around I was scared to death to face the day, but I was more scared that my daughter’s memory would be lost, that years from now, no one would know who Quinn Terhorst was. It was also where my story started to take a turn, the part where the main character decides to rise above the tragedy and make beauty from the ashes. My husband and I decided that in order to honor the life of our daughter, on her birthday every year we would do random acts of kindness for others and take the money we would’ve spent on her and bless others. That way every year someone’s life would be better because my daughter lived. We called this day “Celebrate Quinncidence”, believing that nothing is random. Every year so many of you have joined us and showed a beautiful display of kindness in honor of my daughter. We would be honored if you joined us on Thursday March 12th in doing random acts of kindness. My other hope is that you would take away from this, that no matter how hard life gets, you have a choice to rise above. That we would be a tribe of overcomers, making beauty out of the ashes life gives us.

Celebrate Quinncidence Year 7

Some of you have been following us since the beginning of the blog, some of you are new so I thought I would take this opportunity to tell you about another huge part of our story. March 12 of 2012 our first daughter, Quinn, was born. She was amazing and it was a time full of giddiness and gratefulness for answered prayers, but we were also trying to navigate through this new parent business, so it was also hard. On July 21st, at 4 1/2 months old, she passed away of SIDS. One moment we were putting her to bed, 45 minutes later we were in an emergency room having to say our goodbyes. A part of our lives ended that day and to say we were devastated doesn't begin to describe what we experienced those first few years. So when what would have been Quinn's first birthday rolled around, we really struggled with how to approach this hard day. One night I told Tim that I think the only way we could make it through the day is by not making about ourselves and our grief, but by helping others. What if we did random acts of kindness and took the money we would have spent on cake, balloons, and birthday gifts and spend it on others all in our daughter's name? One of my biggest fears was that because she was only on this earth for less than 5 months, people would forget about her. I never wanted her to be forgotten. So this was a way to remember her each year. It was one way I could keep her memory alive. So we called it Celebrate Quinncidence and invited our friends and family to join us, knowing that they were grieving too. I also prayed about it and decided to be vulnerable with this precious part of our journey so I invited my high school students at Washington High School to join me in random acts of kindness. I wanted my students to learn something more valuable than anything I could teach them in the classroom... that life gives us really hard things, most of them we can't control. And I think we get so hung up on the hard things that it's paralyzing. But see, we have it all wrong, the heart of the story isn't about the struggles, it's about what we choose to do with them. And that first year was beyond anything that I could have ever dreamed. The way my daughter was honored all over my school, my city, my hometown, and so so many random places around the world was breathtaking. We have continued to do it every year. This year would have been Quinn's 7th birthday and we would continue to be honored if you joined us. Take this week to pray about who you can bless. That God would bring someone into your path that needs something that they can't repay you for. And that you would be bold enough to say, "yes".

Today's Cardiologist Appointment

Today was a good day. Full of reports of improvement and answered prayers! We started our day with an EKG and echo- on both we saw many sinus (regular rhythm) beats! At some points 128bpm! Her 24 hour heart monitor results came back and all her numbers are up by almost 20bpm! Last time her lowest was 39bpm - this time it was mid 50s!. Last time her average bpm was 56- this time it was 78bpm! Last time her highest bpm was 78- this time it was in the lower 100s! Willow also came home from Ann Arbor with a Mitral Valve that had severe leaking and could require future surgery if there were no improvements. Today we were told that the leakage is now only deemed as mild! Because of this, the Doctor took Willow off Captopril- a heart med we believed would be indefinite!! Willow was also sent home with Pulmonary Hypertension but it was believed that her pressures would come down with time. Her pressures in her lungs are supposed to be around 25 and she was at 59 when we came home from Ann Arbor- today they were between 26-30, so she is close to getting off of her Pulmonary Hypertension meds too! Our cardiologist said willow's heart repair still looks beautiful and her heart is functioning well. The average heart's function is 65% and hers was 65%! Over and over the doctor kept saying, "This is just fantastic!" We still don't know what the future holds- future surgeries or pacemakers are still on the table. Time will tell if her heart continues to get better. But today surgery was not mentioned once and I'll take that as a victory! Thank you so much for your continued prayers! We definitely know that today wouldn't have been possible without prayer and an even bigger God who answers prayer! As of now, Willow won't have another heart appointment till the beginning of June!

Since we've been home...

We are now 6 months out from Willow's open heart surgery. Many of you have been asking for updates and I really keep intending to post something, I guess I just don't really know how to update. Home has been so good... Tim and I went right back to work two days after our return, Willow has not returned to daycare, but has been graciously taken care of by family and friends that have given many hours of their time to love on her. Willow is doing great. She is eating well and gaining weight, sleeping well, and so content and happy. We have have a physical therapist that comes in once a week and an occupational therapist that comes in every other week alternating with speech therapy every other week. Really, if we could just stay home, life would be really good. BUT we have a lot of doctor appointments and I feel like the doctor appointments, while we have great doctors, always leave us feeling unsettled. There are a lot of warnings, "She is at higher risk for this" , "Look out for that." I know these professionals are just doing their job, but I never feel encouraged, or hopeful. The biggest health concern right now is that Willow is still in partial heart block. I am by no means a medical professional, but the best way I can describe heart block is that we have a top and bottom chamber to the heart. The top chamber sends a signal to the bottom chamber to beat in unison (lub dub, lub dub). With Willow's surgery being so close to the node that conducts these signals there has been some sort of damage. It seems that every other beat is being conducted (lub, lub dub, lub, lub dub). Most infants Willow's age are at 130bpm, Willow is at 60bpm. We met with a new doctor that specifically looks at the conduction of hearts around Thanksgiving. He wanted to put in a pacemaker as soon as possible, not because it is an emergency, but almost as an insurance plan. When they sent the info to our Ann Arbor surgeons and specialists they said they had the luxury of seeing her at this rate for 5 weeks and feel confident in waiting, specifically for her to get bigger but I think they believe that a pacemaker is a strong possibility in the near future. It is so hard living in the inbetween. So many ask us how Willow is doing and honestly, if you were with her for a day you would be so impressed. She is a delight, babbling up a storm, she smiles for everyone, she is almost sitting up (Does it for a minute at a time before tipping over), almost crawling, eating baby food like a champ and taking a bottle with ease, and gaining weight. If we just focus on that, there is so much to be thankful for. BUT every doctor appointment we get sucked back into the worry. Worry of opening her back up, of going back to Ann Arbor, worry of what her heart is doing behind the scenes. So here's my plea to my prayer warriors out there- Please pray for a miracle.She has a holter monitor put on today and 4 which will monitor her the next 24 hours- we will find out the results at her next cardiologist appointment a week from today (Feb. 19th). Will you join me in prayer that the monitor reveals that she is out of partial heart block, that she is at normal rhythm at 130bpm? If that happened we would know it is only because of God and not of anything we did. Will you pray for Tim and I? We are always an emotional wreck the 24hours of monitor and the week of waiting for the results. The blinders go on and we forget how well she is doing and are reminded of her diagnosis and all the health concerns that come along with Down Syndrome. We have a month full of doctors appointments (hearing checks, vision checks, etc.).  Each of them take us down a rabbit hole of concern for her future. It is hard on us individually so it is so hard for us to be there for each other as a couple. Please continue to pray for our marriage, mostly because I want to always be proactive and aware of the strains this places on any marriage. Thank you, thank you so much for being patient with us, for partnering with us, and for praying for us!

We are Home!!!!!

Willow got discharged from the hospital today at 9am! I of course had an adorable going home outfit for Willow to wear that she blew out of and we had packed everything else back at the Ronald McDonald House. So the nurses quick got her one of their robes and gifted her with a hat she knited. It is just real life. It isn't perfect, but that little peanut was joyful in whatever she was wearing. We cleaned our room at the Ronald McDonald, then caught an Uber to the airport and boarded our private jet with a program called Wings of Mercy. Much like Angel Flight (which flew us out to Ann Arbor), Wings of Mercy is a group of pilots with access to private planes that donate their time and resources to flight kids to treatment in locations throughout the country. Our pilots were from Holland and Grand Rapids, MI. They treated us so well, bringing us blueberry muffins, fruit, yogurt, and coffee, and letting Cale drive the plane for a hot second! We landed in Sioux Falls around noon. It was a perfect homecoming. Loved ones gave us our space, but showed their love with balloons lining our walkway up to our house, sidewalk chalk with messages of love, essential groceries sitting on our front step, and a pumpkin and pot of flowers. I can tell you that home feels so good, but that is an understatement. It is such a gift to be home! Thank you, for praying us home. So many of you have written us cards of encouragement, given gifts, done fund raisers, called friends in Ann Arbor, done whatever you could to help. This would have been so much harder without such a strong support system behind us! Willow still has a lot of healing to do. Please continue to pray that the leakage in her heart heals, her pressures in her lungs go down, and she comes permanently out of heart block. Pray she never needs another heart surgery again! And pray for our family as we transition home.

 Our heart surgeon, Dr. Romano. She really took us under her wing. The way she treated us like family will never be forgotten. She will always be a huge part of our story.

We got a Flight!

We just heard back from a program called Wings of Mercy that they found a plane and a pilot to take us home! I will give you more details when I have them, but I know some of you have been so concerned and asking friends who know pilots! Thank you for all your efforts! And thank you for the prayers, they continue to be heard!