Let me start out by saying Life is Good.
I am Susan Otte, in 2004 I met John, and after our first date, I thought this guy is so kind and sweet, not really my type, but such a great listener. Well about a year later we got married. Fifteen months later, December 13th, 2006, Quinn was born. She was a full term, beautiful, amazing baby girl.
When Quinn was born we were informed that she had a hole in her heart. At the same time we were told this is not anything to worry about, it’s fairly common, and it should probably close on it’s own. These first 4 months were the best months ever. We played, Quinn jabbered, we loved on each other, and it was such a lovely innocent time, where things were typical, and I will forever be grateful for those months.
At Quinn’s 4 month check up, our primary doctor wanted us to see a heart doctor, again saying, this is probably nothing to worry about but, let’s check it out to see if there is an issue here. So off we went, I can say I really did not expect to hear anything except, she is fine, so beautiful, so gifted, so amazing, but just fine. While instead as the techniction started doing the ultrasound of Quinn’s heart, she started getting really quiet, and stopped talking all together, and said she needed to bring the doctor in to see this. So Dr. Martin walked in and told us very simply, Quinn has heart disease. She has transposition of the great arteries. Which means her heart is in her body backwards and the small part is pumping blood to her body, and the large part is pumping blood to her lungs, and we need to do surgery. I sat there, with tears running down my cheeks, thinking, this is not how this was suppose to happen to us.
We then went to Children’s Hospital, and met with Dr. Duncan, and talked about surgery. This was a big surgery, both doctors were not going to say anything differently about that and we have a 90% chance that the surgery will work out. Now Quinn might not be running marathons, but past that, we were fine. Her mind was strong and she was hitting all her milestones, earlier then the books said. So we were feeling pretty good, this was not in our plan, and John loves to plan out our future as far as possible, and so this was defiantly not in the plan, but we could adjust.
So about 5 months after Quinn was born we were getting ready for surgery, we had once again planned it out and I had my book of 400 things to do with your child before they grow up. I was looking forward to bending down all the pages of the book we would do after she heals up, and was looking forward to keeping my mind occupied, as it was going to be either a 6 or 10 hour procedure depending on which one they did.
Once her surgery was over, the smaller of the two, she had a banded vessel going from her heart to her lungs, rather then switch the entire heart around. I was thankful she made it through, and was so thankful to see her. That night I remember thinking, oh, I wish she would stop crying; I could tell she was hurting and it’s so hard to hear her crying. How that would bite me in the rear later.
The next day, her anesthesia was not wearing off quite right and she ended up aspirating and a code was called. We were sitting there with Quinn doing great one moment, to her choking and she stopped breathing. Everything turned quiet and went into this crazy slow motion. All of a sudden the room was full of doctors and nurses, and we were ushered down the hall to a room. Sitting in that room, was the worst time of my life. I did not know what was happening and if Quinn was even going to make it. Going from doing great to the exact opposite, in a matter of mere seconds cannot really even be described. I remember I did not want to be touched and could honestly not say if we were there for 10 minutes or 4 hours. I just remember praying with all my might, that we would not loose Quinn.
Thank God, we were then informed that she pulled though, however we were told to give time the upper hand because we don’t know if there was any damage from that episode. So we had no choice but to be patient. Well over the next couple months, Quinn did not cry. She did not do much of anything, well she did breathe on her own, and did a good job keeping her core temp correct, so that is something. The nurses there were wonderful, and the doctors were knowledgeable. After some time had passed, we had one doctor tell us that we need to accept the facts, Quinn has severe brain trauma. She will not amount to much. We will be luck if she can keep her core temperature, and if she can hold her head up, that will be about it. She will probably not be able to laugh, or understand much of anything. That was devastating and my heart was breaking. We went into the hospital for a heart surgery and we are leaving with a heart semi-repaired, as well as brain damage, and being told to give it time, and see what happens. Just don’t expect too much.
I’m so thankful to Dr. Duncan who came in and sat down with us for a long time after hearing the news I had just heard. We talked about Quinn and talked about some of the miracles he has seen happen, and not to rely on what one other doctor told us. Doctors don’t know everything and he saw something special in Quinn, so not to give up on her and to love her up with everything we have, and see what happens. It’s a strange feeling to be so grateful to still have her, but not know what the future holds. So we simply could not look into the future. This was when I really learned that every day is a gift and not to waste it. We were torn between being so grateful to have Quinn, yet so heartbroken to see her lying there, still and silent.
This is where I ran across the quote – If you’re handed it, you can handle it. That simple quote got me through many days, as well as our families, our faith, and our amazing little girl who simply was not going to give up.
I needed that. Sometimes we lived minute by minute, some moments hour by hour, by the time we left the hospital we were living day by day, praying with all our might. So things were improving. We were told to get Quinn into therapy, and that is when we met our first therapist, Chrissy, at Handprints and Footsteps, with many other amazing therapists to follow. She started teaching us what to do to help Quinn relax. What exercise to work on to help her improve, and at the time, just getting her to relax was a big deal. After a few more months passed, we had our first little miracle. Quinn started tracking. She would watch Chrissy move a few things around. YEAH! Our first little miracle! We have decided to live our life being so thankful for all the little miracles we have, and we have had a lot of them.
Over the next few months Quinn was in and out of the hospital a number of times. She needed to be tube fed, because she was not strong enough to eat, so we had a G-button put into her stomach, to help her with eating, and we had fluid drained off her brain from when she coded. Both of these surgeries, although scary, especially after the first one, helped Quinn. In fact she was doing well enough, that I could start out the school year back in the safety of my art room. The grandmas started watching Quinn. Things started looking up. We knew our path in life had changed, and no one could tell us what to expect, so John’s future plans were on hold, and I still was not looking into the future, I simply could not do it.
At this time I was given a poem, which I now love. As I was sharing our story, I could not always find the words to share. This was not the plan, but we were thankful to have Quinn with us on our journey, wherever it would lead. Let me share it with you.
By December Quinn had just turned one, we were starting to see super small steps of improvement. She would look at us, and make small noises. We were seeing more improvement at therapy, and she was finally relaxing and feeling better. We were settling into understanding and accepting that Quinn was going to have special needs, but she was a fighter and it was so good to see her working so hard to figure out her body and environment around her. So Christmas Day, 7 months after her first surgery, we were celebrating, and relaxing and taking it easy. Feeling like we were finally getting into a groove, not the easiest one, but we were making it through. We got another surprise. John walked down the stairs to greet Grandma Martha, Quinn, and I to say, I think I’m having a heart attack. What? Let me say, if either one of us were to have a heart attach, it should have been me. He eats healthy, for the most part, and exercises, and really takes care of himself. So we left the house, and I remember telling him, this is something I’m not the most proud of, but, it’s what I said, if we get to the hospital, and you are fine, I’m going to be really ticked to find us having another huge hospital bill for no reason. Yes, not my best moment, but that was what happened. As he was sweating like crazy and freezing cold, there was something going on.
He had a huge heart attack, due to a blood clot getting to his heart. The doctors said they were honestly surprised he even survived. Past that, they did not know if he would be able to recover. He would probably not ever go back to work, and we could start getting ready to apply for disability. Well John is stubborn, and this was also not in his plan, so he was upset and was going to show those doctors. For the first few months the grandmas were now watching Quinn and John, have I mentioned how grateful I am to our moms. They were amazing helping with my two health fighters, who were continuing to improve, on the slow track, but improving nonetheless.
By the end of that school year, Quinn was starting to jabber more, she started moving her head more, she started unclenching her hands and was even repeating sounds. John had just started back to work, and was almost back to full time. It was not in his plan to go on disability, so … he was eating even healthier, and starting to exercise like a crazy person. I will not say this time was easy, because it was not. Stress was there, but we worked hard to find the small positive events to keep us going. At the same time, we are better people because of that time.
Over the last couple years, Quinn has had two more surgeries and we have visited the hospital a few more times for different issues. We have met so many wonderful people because of the new path we were given and have learned so much in the process. I can honestly say that I have never heard any of our family or friends ever say a mean word about Quinn, which is probably why she is doing so well.
Quinn has started eating by mouth, not a lot, but a little here and there. She can hold up her head for shorts amounts of time. She can walk with help, and took 32 steps in a row for Chrissy the other day. She works so hard at school, and therapy. She has started talking more, not just sounds, but actual words, and answering questions we ask her. She is getting potty trained and really likes to go potty, especially if she just got put to bed, but she still does better for Chrissy with that too. She is even crying again, and it still breaks my heart to hear that, but at the same time, it’s a bit of a relief to hear. Best of all, she has started laughing, and smiling again! It is such a big deal to see her smiling! Now that she is figuring out herself much better, she is already starting to pay it forward. Her friend Amelia is not a big talker, and Quinn is helping her find a voice. As it was Quinn who got her to start talking, to top it off, Amelia’s first understandable word was – “Quinn”, whew, how amazing. Casey along with Kaleb, and Quinn’s classmates and friends have the opportunity to learn about, love and care for a wonderful little girl, as well as accepting friends for who they are and what they have to offer. I’m learning from all of them, and trying to bring some of that education into my own classroom, and really take the time to work with some of my special kiddo’s and help them find their creativity, inner strength, and focus on the gifts they bring.
John has his good days and bad days. Sometimes he has a month between doctor visits, while sometimes he is there every other day for blood checks. He has had a 2nd pacemaker / defibrillator surgery. He is still working at getting healthy and is always on the look out for the newest information on health and exercise. He is looking forward to getting his career back on track and studies like crazy. He is trying to get part of his plan back to where he wants it to be, while accepting God’s plan for us, that might not be quite so straightforward. The relationship John and Quinn has is amazing to witness. The two of them can love on each other and the whole world disappears when they sing to each other. Their relationship is amazing, and to top that they both love me, they really love me! How lucky am I.
As for me, I started realizing that my life was consumed with work, and my family, medicine, formula, suction machines, C-Pap machines, and I could go on and on. I was loosing a bit of myself, physically and emotionally. Then I heard the commercial from Gina, to try out for the Better U program. Get educated, get excited, get back on track, and get healthy, and get rid of some of those extra pounds. I signed up and was selected, and through the 12-week program, I got my own life back. Basically I felt supported and cared for, and in turn I started focusing on me. Finding a balance for my life. All in all, now I belong to a gym, and take at least a few hours a week for me time, to exercise and focus on me. I have found I’m more refreshed mentally and emotionally afterwards, then I can give even more to John and Quinn, as well as my students and community, because I am healthier, mentally and physically.
We still work through our own grief cycle every once in awhile, luckily we are at the hope stage more often then not. Our latest experience was when Quinn started school. We had to start pre-school, because we were loosing the therapist that came to our house to work with Quinn. We were worried, worried about Quinn starting Pre-school. Is she going to be safe, are they going to be able to take care of her?
Then the next stage is guilt and shame. Are the kids and staff going to accept her and take time to find the wonderful qualities she has?
Settling in – I found out that students and staff love her. Well, when she is being good, the students love her, other wise they hold her accountable. One day she was hooting and hollering, because she was feeling good, when one of the little guys in her class turned around to her, and said, “Quinn, you need to be quiet, Miss Rachel is trying to read.” I love it; good for him for get after Quinn, just like anyone else! Acceptance! What a joy!
Finally Hope – finding the Good in Quinn, in John, in our family, in our friends, therapists, and schools. To top it off finding a community who is willing to go out of their way to share their love with us. For example we had to sell our home because it was not something that could be adapted to work with Quinn and her needs. I went from feeling overwhelmed and exhausted, I did not think I had it in me to find another house, and I mentioned in Quinn’s blog, I might need someone honest to help us out, and that turned into a handful of people stepping in and in turn finding many more people and organizations, to help build Quinn’s house, and seeing the process getting started is amazing, hopeful and humbling at the same time. Finding the love in our community as well as in each other is simply magical.
Through this experience I have learned: