Jan 25, 2013

Guest Blogger- Rebecca

I don't know how long, but it feels like it will be a lifetime before I can write about Florida. It's just too painful. It hurts so much to look back and remember the details. This is her take on those awful days. I am lucky to have her, hot pink pants and all. I wish everyone could have a Rebecca in their lives.

I am completely aware of how much my husband did. He saved me from so much and I love him. It's true that he is amazing. There seems to be a theme lately about that man. Before Florida John and I had a super fun and playful dynamic between us, and now there are hints of that, but our love is different now. We have been through hell and are somewhere on our journey to "back." I love him and wish I could rewind our lives and give him back his precious daughter.

I can't look up the exact quote by Mimi written in the last days of Mia's life, but the blog title is if not her exact words, a close paraphrase. It's hard to write about something so sacred and personal regardless, but especially when it is more personal and sacred to other people even than to me. MUCH more. I probably wouldn't write this if my blog was public, and my goal is not to write another person's story, but my own experience, watching a loved one watch her precious child (also a loved one) leave her mortality behind.

My experience is so different than anyone else's because I am not Mimi's family. I'm not her sister. I'm not John's sister and I'm not Mia's aunt. I wasn't raised in a family where friends were the same as family or where there were family friends who were like family. It's kind of a foreign thing to me and even possibly somewhat I don't know, tacky or boundary-less to insert yourself in situations where the common definitions would permit family only if you aren't "family." Does that make sense?

So though I didn't hesitate to go be a support to Mimi when her family was away from home and the worst happened, once I was there, the inner angst of wondering who was glad I was there or understood I was there to be out of the way of the family and doing things that family members shouldn't have to do...weighed constantly on my mind. I NEVER felt like anyone there didn't want me there, it was quite the opposite, but I governed myself entirely based on wanting to be sure that I wasn't stroking Mia's hair when anyone more important was in the room or taking up space on the one couch in the room when other's were standing around (though I had a few classic nod offs). I feel like it is a werid thing to mention...but since it was on my mind every minute of the day, it is a part of my experience.

I will add that Mimi is among a few people I call a sister-friend. I don't have sisters. I have some wonderful sisters-in-law who are also like sisters...thank goodness! Mimi is my sister. I would do anything for her and I don't hide anything from her and I just love her. Mimi has FIVE sisters. I know, she doesn't need any more sisters! I'm glad she needs me though, and she does. I don't know how it is possible because her sisters are wonderful, supportive, fun, present amazing women who love Mimi and would do and have done anything for her...not to mention her sisters-in-law who are like her sisters as well...and I don't know if they are all super close, but let's just say there are roughly 10 of them, and I know at least six of them are close to her. The girl is not lacking in the family department.

So, it turns out that in my adult life, I have come to terms with the reality that I do have friendships that are as meaninful and in some cases more meaningful than the relationships I share with family members. I don't think it is a bad thing, I'm still super close to my family...my mom is like a sister, she's my favorite person. I am just blessed to have more than my family to include in my family.

We go camping with them every summer, or we did before the dreadful move. This was in 2010. My kids miss Mia. It still overcomes them.

Okay, so the torturous back story. This is my journal, and I know everyone today knows the gist, I need to get it down for long term's sake. In very brief terms. Mia is known. Mia has been written about here before. She was 4 years old on July 8th and was granted a Make a Wish trip by the Make a Wish foundation. She wanted to meet Mickey and Minnie Mouse. She and her whole family flew from SLC to Orlando for the big trip. They arrived, and she was sick. John checked her out and decided he was concerned enough about how fast her heart was beating that she needed to go get checked out at the hospital. At the hospital, they suspected she was in rejection and decided to figure out via a biopsy of her heart what kind of rejection she was in so they could determine how to treat her. During the procedure, everything went wrong (her heart was in no condition for a biopsy). She came out of the procedure on ECMO, a heart and lung machine. This all happened in a matter of less than 24 hours.

I was at a hotel with Kelly, Sandy, Leisha, Eden and Jenn getting ready to go to see Madonna in concert. I knew Mia was in the hospital and had asked Mimi on my way to Seattle if I was needed there. I knew her three other children were staying with a random member of the church in Orlando, and I figured if things didn't turn around quickly, someone would be needed to care for them. Mimi said her mom was coming and possibly her sister and they would be fine. I will add here that I didn't think going was an option at all. However, I talked to Chris that day about the situation they were in and he gave me the 100% you should go if they need you talk, which is the only reason it was in my mind as a possiblility when the time did arise for me to go. So I'm at the hotel. I was all ready, and we were getting close to leaving for the Key Arena when I saw on facebook that Mia had come out of her biopsy on ECMO. I just knew things were horrible at that point. I felt sick and left the room to go call Mimi in the hall. Mimi coudn't really talk, she just whispered, "Call me when you get here." So then I called John. I told him if I came, I would take care of the kids so that he and Mimi and Mimi's mom and sister could all be by Mia's side. I confirmed with him that it was a good idea and not an imposition for me to come. I went to the airport a few minutes later and got on a red-eye flight to Tampa. I if I hadn't been around when Mia was born and eventually had her heart transplant, I would have never thought there was a need for me. I remember her mom would fly into town and we'd all be thinking that the kids would be with Nana while she was in town. DUH...Nana needed to be with her baby and her grand daughter in Seattle! I knew that the kids should be with someone who loves them (and boy do I) but that all obvious people should be with Mimi, John and Mia.

Just so you get the picture, I wore this for three days until my relief suitcase came!

I have amazing friends. Jenn Anderson was going to drive me to the airport the "fast way" because there was a flight that was leaving like 45 minutes later. In the parking garage of the hotel, she got in a little fender bender. Poor thing! I drove myself. So I got there and got on a flight that was leaving like 30 minutes later. I called Jennifer Wilcox and asked her to go get my van, which I parked in the expensive airport lot. I left the key in it and told her where it was. I know that she and Leah Reed probably picked my van up before I got on my airplane. They were so fast at it. It was late, too. Like 10:30 or so when I called. Before I got on the flight, I had all three of my kids taken care of for the coming three days. My friends here in Puyallup, Stephanie, Jennifer, Leah and Anna along with Chris who worked a few partial days and Emily who was here with the kids too basically took care of it with zero stress to me at all. I was gone SIX DAYS! My kids were in Puyallup in their own beds the whole six days! I know they didn't do it just for me, they did it because it was a way to show support to the McDonald family too. Regardless, it was such a blessing.

I was with the kids for two days at the resort they were at in Orlando. John told the kids before I arrived that Mia was sicker than she had ever been and that it was possible she wouldn't come back home with them. The kids understood what he meant. Ellie told every person we came in contact with. Every single one. I can still hear her exact words in my head, but let's just say that she was very matter of fact. Jensen was angered with every declaration, saying, "Stop saying that, Ellie!" The people listening to her would hand me their room numbers and ask me to bring the kids over to play or to swap sad health stories because we were at "Give Kids the World", which is a resort for children with life threatening conditions. People who knew nothing of our situation (though they would soon) would approach me out of the blue at dinner or in the ice cream parlor and say, "you have the most well behaved children I've ever seen!" I'd say, "I agree, they are wonderful...but they aren't mine." Then on the heels, Ellie would pipe in with her announcement and I'd avoid eye contact because I really just didn't want to talk about it with strangers and especially not when it was making Jense unhappy.

Ellie couldn't sleep that night, she wanted to talk about Mia. We laid in my bed and she was very emotional, over and over saying, "I don't want Mia to die!" She expressed many very mature emotions, like guilt for remembering times when she wasn't nice to Mia. It broke my heart. I kept asking her if she knew that Mia felt loved by her and she agreed. She talked about how Mia would always share with her. She was the only person in the family that shared. She was the nicest person in their family. I just held her. I couldn't cry. I was in such a state of hoping and also disbelief, I felt heartbroken, but no tears came.

I was super awesome looking in my one outfit (I had a few other things, like PJ bottoms, jeans and such but nothing for 90 degrees with humidity. Just my flourescent capris and shirt from the concert. It was special.

The following day, Mimi called and asked me to bring the kids for a visit at the hospital. It was a long drive. We made a stop for dinner, we stopped to buy some things at Rite Aid, and we went to the Orlando Airport to swap rental cars because I had somehow managed to get a horrible, $100 per day rate. While at the airport, I got the call from Natalie that Mia didn't have any brain activity and there was nothing to be done. What a shock. Shocked. Shocked. I was in the bathroom with all the kids (not Jense) when I got the news. I lost it. I was relieved that the tears came, because I was worried that I had been feeling so kind of disconnected or optimistic. I knew I didn't have time to deal with the car rental issue, so we just left for the car to head to Tampa. Ellie, who does not EVER miss a beat EVER kept asking me why I was crying. I said, "Because I'm worried about Mia." She'd say, "Why didn't you cry yesterday, but you are crying now?" I didn't know what to say. I kept thinking about how I was driving them toward the dreadful, never to be undone news that their family's favorite person was gone. I didn't want to do it wrong. I didn't want to make them worry, or be a part of the memory one day when they recount the day they learned the bad news...I just wanted to be a fly on the wall, but I was in personal agony over the unthinkable. MIA! I love her! I missed her so much, and I too felt guilty...I thought about how we were at her house in UT on her birthday and we left for our 8 hour drive to Fruitland two hours before her party was to begin. I wish I had stayed! I felt mad that she was going away so soon when she had overcome so, so much. I was mad that she had grown and changed so much since leaving Puyallup, and I didn't know all of her the way I wanted. I had hours in the car, the traffic was awful and the pain just came and came and came and didn't stop.

We camped in Manti, UT in 2012. There was a youth DANCE going on complete with DJ and the kids danced. I love her moves and she was sure proud of her Minnie jammies.

In the days that followed, I experienced many first things. They were second hand first things because I was a witness to them, I wasn't the one they were happening to. Did I lose something in this mess? Yes. I lost Mia too, but she wasn't my kid. She was a beloved, special little light that meant a lot to me and always will, but she wasn't my baby. I know that while my experience was watching a mother say goodbye to her baby, I still have never said goodbye to a baby of my own. Those moments and hours and days in the hospital are filled with my Mimi's pain, and I don't feel like what I witnessed is mine to share. I will share my impressions. The first night I was at the hospital was when I took the three kids to see Mia for the first time in the hospital. It was that night that they were told that Mia was not coming home again. Mimi documents everything, always, and she has professional equipment that I know how to use. That is why I was there when this unfolded. I tried really hard to cry in private during the entire stay, but that night, I cried behind that camera as the saddest little kiddos swallowed the bad news. They were beautiful and devastated and their response to the news was more than I could handle. They did many moving things next to her bed that night and in the days to follow. They loved their sister and served her and cared for her in big and little ways there in that awful hospital room. I can't bring myself to watch the videos and have no desire to relive what really was a nightmare, but I know there are audible sobs from the camera lady throughout that footage.

It was that night as I witnessed this amazing family with so much love and joy and tradition and meaning to give that I doubted Mia could possibly be in a better place anywhere but with them. Until that night, I was hoping for her recovery. Once that wasn't an option anymore, I hoped that Mia's happiness in this life would be rivaled by her joy in the next. People always say that everyone is better off in the next life...but she had it really, really good here...and that was very clear to me that night behind the camera. How could she be better of anywhere but with her people?
For some inspired reason, Mimi did a family photoshoot days before leaving on what was to be their Disney vacation. I have been told it was two days before. That is a miracle.

I watched Mimi that night closely. She was trying to be strong for her kids and the wear and tear of the news was written all over her body, but she was like a statue that night. I have never seen her like that before or since. She was dead. Gone. Mad. Hurt. Stoic. Over it. Her expression was nothing. She was physically there, going through motions, but shut off. I know she was feeling a lot, I know the tears of her three loved to death children who were grieving were penetrating her heart deeply, but on the outside...there was emptiness. How do you face losing your baby...a baby that you changed your whole life in order to fit her in, one that you gave everything to in a way most parents never have to do for any child...how do you feel when she is senselessly ripped away and now you have to watch your other precious children, who have also wanted her and sacrificed for her and loved her and been filled up by her wrap their minds around life without her? What is the expression on your face when you face that? I know, because I saw it. There is no expression. It is like being dead from the heart up. Just dead. John told me that he didn't think Mimi would ever come back from this, and that he feared he had lost both she and Mia. I believed him.

I was in awe of John. He too lost his baby, and boy is he a plugged in father. He and Mimi fully marinate in the joy their kids bring them. I worried for him at times because it was clear that his number one priority was Mimi. He sheltered her from conversations with doctors and nurses, he sheltered her from press interviews, he was just everything for everyone. He was visibly destroyed, but faced all the hard, extra, insensitive things head on. He must've said two dozen times, "Mimi is my first priority." I know in the after math of things he has taken time and grieved heavily and healthily, but those days in Tampa, I felt like he was "on" for his family. 100%. It was impressive and unfathomable to me and others.

Anne, John's sister came after a day or two. She is a good friend of mine and we stuck together until she dropped me off at my house the following week. We talked about things a lot and when I have had meltdowns post coming home, I know I can call her. Oddly, we haven't ever achieved being there at the right moment to help one another, but we have talked a lot over the past couple of months. I know when she asks, "how are you doing?" That it isn't a rote question. We flew home side by side in disbelief. It felt like we'd been battling in a war and like we would suffer PTSD upon resuming "life as usual" the next day. I am so glad to have shared that flight with her and the nights in the hotel, she is a great woman and friend, and I know that even better today.

I'm angry. I have always had very simple faith that God is in the details of my life. I know he doesn't care if I wear blue jeans or sweats, but when I really want the jeans and I find them dry in the dryer, it makes me happy and I think, "There he is." Details. When my uncle died last summer, he was in the details of that too. We got to see my uncle at our reunion which finished the day before his death. I was in McCall, with a lot of other family and we were able to easily drive down for the service...details. Mercy. Just little things, but they make life good. This whole scenario has shaken that faith. There is nothing in the details of the week in Florida that make me want to give God the credit. Do I want to think that it was his design for us to leave the hospital for the final time en route to a restaurant? Why couldn't we take Mimi and John to their bed and feed them homemade chicken soup through a straw? Why? Why did Mimi and John and the kids have to get on an airplane the next day? Why? Can you imagine carrying the burden of one less, very important person of your family not having a place to sit? Not taking her shoes off to go through security? Do you know how many people actually ask "how are you?" when you are out in public? Roughly every person who opens their mouth to speak to you will ask that. I promise. What do you say? I mean, there is no shallow answer that feels right. Why couldn't the whole family go home to their own beds? WHY? It is hard when you believe there is a plan and you know this is part of that plan, and then you think about who is in charge of the plan...it makes me mad! I still have faith that the deficits will be made whole and that the understanding and the answers will come after I leave this life...but I am unhappy waiting. The faith blossom is reduced to a sapling. Not ALL the faith, but the part of me that believes those easy to believe things that are hard after something like this...the "everything happens for a reason." or the "have eternal perspective" or the "she'll raise her baby after this life, in the next life..." It just feels hollow somehow, like I know all the stuff I need to know, but what I want doesn't go away because I know those things.

I took this for her first birthday party invitation. So, so cute.

How many times in the past 4 years have I heard Mimi say, "I want her." So many. I remember the sad talks at Seattle Children's when Mimi had spiritual confirmation that Mia was going to come home with her. We knew she would. At least in moments. Then there were the set backs and the weeks that passed and the doubts would come to the front of her/our minds and she'd cry, "I just want her." I wanted her too. I wanted her for Mimi, John, Ellie and Jense. I wanted her to be a miracle...and it was miraculous when she got her angel heart, truly. Then, we wanted her and we didn't really even know her. Now we want her and we know and love her. We know that she is unlike any other child on the whole planet. She is joy and peace and gentle and funny and flirty.

I find myself saying the dumbest things as new things come to my mind that I looked forward to but didn't let go of yet. Like we (Chris and I) were at their house around the 2 month anniversary of her going to heaven, and we were lightheartedly talking about Mia and how Chris remembered her and how she'd always flirt with him and he was slow to win her over because of our infrequent contact with her the last year and a half. I said, "Well she wasn't going to last much longer, because no kid can stay away from Chris for long." Ugh. I hadn't let go of that excitement in my future yet when Chris would walk in the door and be her prize like he is for neices and nephews and essentially all kids who know him well. I still had it in my mind somewhere that that day was coming. I said it out loud. Right there in the entrance to their house, it sunk in immediately that we weren't going to have a day like that. It probably would have been that visit, but...oh yeah. That isn't going to happen. Sorry, did I just say that? It feels sometimes like everything I say is wrong, but it is all virgin territory. I don't know what to say. I still have little nooks and crannies in my heart where Mia's future lurks as if the past three months haven't happened. It's like you know, but not all of you knows. There is an undoing that is gradual somehow, because you have to reset all of these different areas in your mind that are untouched by reality somehow. I had to Christmas shop for only three McDonald kids. I had their family in my home for two nights and no Mia. I had to walk through her room with her clothes and toys everywhere but no her. I had to see her perfect little body in a casket. I still want her.

Just like two weeks before everything happened, I met Sandy at UW to do some family photos. As I took the 45th street exit, I started to cry. All these horrible trips to Children's Hospital came rushing in unexpectedly and I just cried as I drove. I was surprised by my emotion because so much amazingness had followed that time. It's weird, was it some kind of foreshadow? Like I guess a part of me was preparing? I don't know. I have made that same drive dozens of times and thought as I crossed Brooklyn of hanging out at Kelly and Danny's apartment in college or passing greek row and remembering sleeping on sleeping porches with friends when they were in sororities.

I don't know how to end this. I just wanted to get my thoughts down and it has taken months to accomplish. I know there is much missing, but at the very least, know that Mia is missed and loved and always will be. I want her. We all do. And that is an understatement, and also a memory from the hospital. Sammy would run around with unending energy saying, "I want Mia!"

(I randomly added in a few pics I took of Mia over the years. I am so glad for pictures!)

Mia's Obituary. (I didn't take this pic, but I looooove it)

Mia Marie McDonald - 2008-2012 Mia Marie McDonald, beloved daughter of John and Marie “Mimi” Jensen McDonald returned home to her Heavenly Parents on October 8, 2012. Mia was born on July 8, 2008, in Seattle, Washington. Mia came into this world with challenges, but our baby girl came prepared to live life fully. Her family knew from the time of her birth that she would need a heart transplant. After many prayers on her behalf, Mia received the much awaited heart transplant when she was just four months old, from her angel heart donor Jacob. She is our little miracle and we feel blessed for every day we had with her. She had a special way of endearing others to her and connected with people everywhere she went. Her sunny and infectious personality would fill any room. She loved music and would dance instinctively. She loved singing primary songs, playing with her “babies,” coloring, eating “chocits” going to preschool, calling her “Aunt Nats,” giving “essimo kisses” and giggling. We will miss her affectionate, sweet, spunky and fun personality. This darling girl had a mischievous side and she would relish teasing her brothers and sisters, and loved when people would laugh when she said something funny. Mia exuded joy. Her tiny body radiated light every day of her life. Last week, the Make-A-Wish Foundation granted Mia’s special wish to meet Minnie Mouse in Disney World. Upon arrival, she became ill and after being hospitalized her heart stopped beating. Although her heart recovered, the trauma to her tiny brain could not recover from injuries incurred while they were trying to resuscitate her. Darling Mia never made it to Disney World, but she will be giving someone else the gift of life by now being on the giving end of organ donation. Although few, we will cherish the sweet years we shared with our golden curled beauty, Mia. She will be dearly missed by her parents, her brothers Jensen and Sam, and her adoring second mother, her sister Ellie. She is also survived by her grandparents Sid and Cindy Jensen of Midway, UT, Dean and Laura Conway of Spanaway, WA, and Vern and Carol McDonald of Lakewood, WA, as well as numerous aunts, uncles, and 60 cousins. She was preceded in death by her great-grandparents Murray Giles, Fred and Aliene Jensen, Howard and Shirley Hallmeyer, and Floyd Vernon McDonald. We love you Miss Meena, our arms and hearts ache to be with you and hold you. We anxiously await the time when we will be reunited. “I missed you in na night!” Funeral services will be held at 11am on Saturday, October 13 at the Midway Stake Center. A gathering will be held from 6pm to 8pm on Friday Oct 12th, and one hour prior to the services on Saturday. Mia will be interred in the Midway Cemetery. Please join us in the celebration of her courageous, joyful, life.