It's So Hard to Say Goodbye

Wednesday night my husband became the oldest living marf in our family. His Aunt Bev passed away after a stint in hospice and a long battle with progressive heart failure, among so many other medical issues. She was one of the most amazing women I have ever known, and we are still reeling from what seems like a sudden loss.

We got the news that she had taken a turn for the worse and was being placed into hospice care (meaning she was dying) a few days into a spring break vacation to a friend's wedding in Florida, and after many tears and a long conversation, Giraffedaddy and I made the call to finish our trip as planned. We knew it was what Bev would tell us to do. She rejoiced over things like our family getting a rare fun trip, and we had no doubt she'd tell us to have fun and not worry. Easier said then done, but we continued on with the planned trip. We arrived back home wednesday afternoon and went straight to the nursing home to see her. Over our hour and a half visit we hugged her, shared about our trip, told her we loved her many times and how special she was to us all. We said all the things we needed to say, the things we wanted her to know, and we relished in her smile and hearing her tell us she loved us too.  It was a good visit all things considered. She was barely able to talk, couldn't make solid eye contact, and was clearly tired and sometimes disoriented, but she was smiling, grateful to those caring for her, and happy to see us. In the hallway outside her room we did our best to explain to giraffeboy and giraffegirl that this was the last time they would likely see her, and then we went home. I got the call from Giraffedaddy that she was gone as I walked our kids into school on Thursday morning. As I stood outside the school crying I had no doubt she waited for us before she went on to heaven to see her best friend and brother Don. I can't begin to describe how grateful I am for that time.

Bev was my husband's aunt, but she was so much more than that. She was my Aunt too, from the moment I came into the family. I've lost count of the number of chats we have had, the number of giggles we've shared. I can recall her gigantic smile and her tear filled eyes the day we told her we had gotten engaged, her joy on my wedding day, and her excitement when we found out we were expecting our first child. I can also recall sitting in the room with her praying and crying as we watched her best friend and my father -in-law take his final breaths while I was four months into my pregnancy. It was she that assured us later that Don would be mortified if we named our son after him, and to ignore the family pressure to do so. She also assured us that our baby would know his Grandpa through her stories, and easily agreed she would be our babies' Grandma. It was a role that she relished, a role that she excelled in, and my children are incredibly blessed to have had her for as long as they did.

I can still close my eyes and picture her holding Giraffeboy as a newborn in the hospital, her arthritic hands a work of art balanced around his tiny head, her face lit up in the biggest smile ever. I can recall the many visits when she would play with him and make him giggle, tickling his chin, grabbing his nose, and as he got older showing him the fish in the pond outside her apartment door or reading him a story. And when Giraffegirl came along she just opened her heart up wider. She cried with me as we stood over her basin in the NICU, cried again with me at the prospect of these babies ever having heart surgery the day after Giraffedaddy's aorta surgery. She loved those kids like they were her own, and she relished every moment we spent visiting her.

We took her to doctors appointments over the years, and I sat by and kept her company through many days in the hospital or waiting room over the years. I have seen her in immense pain, in discomfort, be poked and prodded by inconsiderate medical staff in a way I would almost call cruel. But I have also always seen her give a smile through the worst of it, say thank you EVERY TIME to the medical staff that took care of her, and praise God despite what she was dealing with. I have never seen her feel sorry for herself or heard her wish for different circumstances. She could not have been described as graceful but she was definitely full of grace. She had a unwavering faith, and it was sitting next to her at a Christmas Eve Service cradling my 6 month old son that I started truly seeking a relationship with him. Although her faith was incredibly strong, I never felt her push us, never felt her judge me, never saw her say a harsh word about anyone. I saw her cry the day we told her Giraffedaddy had accepted Jesus, but I knew they were tears of joy. She cried the day I told her too.

I went to her often wondering about the best treatment for the kids, questions about family history, frustrations with family members, questions about faith, and with each new question she answered honestly and as well as she could. She encouraged me to keep seeking, to get involved in our local Marfan group, to turn a blind eye to those that wouldn't treat me well, and to savor every day at home with my babies even when I was overwhelmed. She encouraged me to be the best person I could be, to do what is right, and to trust God.

Even as she was leaving this world I watched her that final day as she gave her nurse a huge smile and told her thank you. She strained for every word, but it was that important for her to say it. We could all learn a lot about how to treat our fellow man from her example. Her gifts to us will continue even after she has gone. Her last act of selflessness will come next week, when after the wake they will take her body to the University of Minnesota Medical School, where they will be able to study it. It was her hope that they will learn things from studying her body that can help other marfs, and others who suffer from similar conditions. I can't begin to describe how proud I am of her for that gift.

It will take awhile before the grief will gently fade and be replaced with only happy memories. You don't lose someone so important to you and have it not affect you. But there is joy for her in our pain. Joy that she no longer suffers, joy that she has been reunited with her brother in heaven, and joy she is hanging with Jesus. I have no doubt her and Don are up there giggling and talking away, and that she is giving him an earful about his grand babies and kids and everything else that has gone on since he died. Picturing this makes it a little easier. Heaven is a bit brighter tonight from the light of her radiant smile.  I am grateful to have had the chance to bask in that smile for as long as I did.

                                      

http://www.youtube.com/watch?v=yYHT-TF4KO4

On my Knees...Hanging On By a Thread...and Counting My Blessings

It still amazes me how an appointment for one thing can turn into a whole other adventure. And no matter how many times this happens with the kids I can never prepare myself for it. It always seems to come out of left field, and leaves me feeling like it takes me out. This happened with Giraffegirl's orthopedic appointment 3 weeks ago, and I still don't feel like I have quite gotten my footing, as the information keeps changing and the ground keeps shifting.

We went in because Giraffegirl had a lump at the top of her foot that was being irritated by her orthotics. We had seen her orthotist and been told we better see her orthopedic doctor because no one knew what it was for sure and we wanted to be safe. So I went in prepared to hear about that. I had no other major concerns, and expected it to be a relatively short and sweet appointment. The lump turned out to be a ganglion cysts, a harmless fluid filled sack that will eventually go away on its own. But while examining Giraffegirl's heel tightness the doctor noticed it was getting much worse. He mentioned serial casting at the time, but I didn't pay much attention since he was sending her to a physical therapist to work on it, and I had never heard of serial casting being used for marfan kids. Truth be told, I didn't want to go there yet. It took almost 2 weeks to get into the PT's office, so we happily continued on with our routine, grumbling a bit about the prospect of PT and how we would schedule the appointments around school with the office being 45 minutes away. But no real worries yet.

All that changed at the PT appointment. It only took our PT about 5 minutes to determine that Giraffegirl's heel cord was so tight therapy wouldn't do much, and she needed go through the serial casting process to gain back some of the heel cord length and help put her foot back in the correct position (Giraffegirl had compensated well for the tight heel cord and flat foot by curling her foot under and walking essentially on her ankle). I shouldn't have been completely surprised by this news, as I see everyday how misplaced her foot is, but I still was. I thought that would be the worst of it, and I put on my big girl pants and sucked it up. I started the blame game that day though. I had missed her last ortho appointment and couldn't help but ask myself "What if I hadn't waited so long to get her in? What if I was better at keeping track of when to schedule appointments? What if I had gotten her in 6 months ago when she was supposed to see her orthopedic doctor? Would we still be in this position? Would she still need to go through this?"

It was a long week waiting for the casting process to start. A week filled with second guessing my decision to do this. A week filled with Internet searches for other treatments. A week of unanswered questions. And a week of trying to explain to a seven year old why casting her foot was necessary and what it would mean for her. A week of trying to figure out how recess would work when there was snow on the ground and she can't get her cast wet (school made that so easy- love our school!) And a week of trying to prepare myself and Giraffegirl both mentally and emotionally for this new challenge.

I thought I was ready. I thought I had dealt with my emotions. And then we sat at the casting appointment today and I learned they would cast both feet, not just one. And I found myself figuratively on my knees once again. I wasn't prepared for that. It makes sense. It does. It really will be easier and more effective if her legs are even, if she isn't limping from a height difference of a casted and non cast leg. But I hadn't even considered the possibility, and no matter how much sense it made, all I could see was my little girl in her pigtails laying on that table. I couldn't wrap my head around how much harder two cast legs would be for her. I couldn't bear the thought of her facing an even harder challenge than what I'd anticipated for her. I found myself hanging on by a thread, forcing a smile to keep my tears at bay for her sake, as well as mine. Following the advice of the Charlie Chaplin song "Smile' (see lyrics below if you don't know it). And I was doing OK, until they stood her up and had her try to walk. Her Frankenstein-like first steps had me on the edge of losing it. The first silent teardrops slid down as she reached the other end of the hall and turned around. And I saw it- her huge smile as she bravely tackled this new challenge. She wasn't crying. She wasn't feeling sorry for herself. She was just taking what came her way with a smile on her face and determination in her eyes. And she was a rock star. She tackled that hallway, got a few more adjustments, and we headed off to drop her at school. 

And I was reminded once again of the greatest lesson I have learned in parenting. It's stated in a quote hanging on the wall of the toddler room of the MN Children's Museum. It states "While we try to teach our children all about life, our children teach us what life is all about". It's a statement that resonated powerfully with me today. At my worst, when I have doubted everything I know about this disorder and everything I believe about treatments, a look from my kids with their absolute faith in me can buoy me up. And when I am mourning the loss of their perfect health, they remind me they are stronger than I give them credit for. They are brave. They are amazing. They are miracles sent from God. And they remind me that I can do this. I can take care of them. I can face each new challenge with faith and hope. I can make these decisions about their health to the best of my ability and know that it will be OK, even if it doesn't work.  And I can accept the curious looks and questioning glances of strangers, the teary eyes of friends and family who care, and not question my decision. Because there is a little girl with a purple right foot and pink left foot who believes in my decision, and who doesn't ever question my judgement on decisions for her health. And for this, I am counting my blessings and knowing I am the luckiest mom in the world.

  

"Smile"

Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...

If you smile
With your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
If you just...smile.

Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just...

Smile, though your heart is aching
Smile, even though it's breaking
When there are clouds in the sky
You'll get by...

If you smile
Through your fear and sorrow
Smile and maybe tomorrow
You'll find that life is still worthwhile
If you just smile...

That's the time you must keep on trying
Smile, what's the use of crying
You'll find that life is still worthwhile
If you just smile

Snowpants

This desire to start a blog started in me over a pair of snowpants. I know that most of you now think I am crazy, but bear with me here and hopefully you will understand. When Giraffeboy was in first grade I realized as the first snowfall approached that there was no way he could get a pair of regular snowpants over his orthotics and tennis shoes. (For the marfan parents who might read this, we can have the orthotic conversation another day and I will tell you why I am on team use orthotics.)  I started searching online for a pair of snowpants with side zippers for kids, and at first couldn't even find them, and then when I did they were over $100 and were fancy ski snowpants only made by one company. I was so frustrated.  I couldn't understand why there were not more reasonably priced options, and I truly felt like I was the first parent having to navigate this road. I know I wasn't, but I did not know anyone else who ever had and I couldn't find any suggestions of what other parents had done on the web.

Now a few things for you to understand. 1) We are on a tight budget in our house because we chose to have me stay home to take care of the kids and live on one income. 2) Giraffeboy is NOT an outside kid, so the snowpants were not going to get hours of use. 3) We had snowpants that fit him just fine except for the issue of getting them over the orthotics. 4) He could not put on his own orthotics and shoes and could not tie his own shoes (a hard thing with those long marfan fingers). 5) He had to be able to get his boots and snowpants on independently and get his shoes back on independently too.

I could have talked to the school about getting help for him for this, but I really felt like this was something we needed to figure out on our own. Since Giraffeboy didn't have an aide that worked with him at school I didn't think it was reasonable to expect them to provide someone each day just to help him get his shoes back on. I know that some would disagree with that, but I believed that it was our problem to solve. I also didn't think it was reasonable for me to go to school to help him each day either (I did that for a week or so, and it was not fun, especially for Giraffegirl). So I asked around, posted about it on Facebook (where a dear friend even offered to pay for the snowpants for us), and after searching came up with a plan. My aunt (We will call her Super Sewing Woman) had volunteered to take the seams out of his existing snowpants and install a zipper into them up to the waist. So I picked up her supplies, and after dinner that Thanksgiving my aunt and other family members went to work and made him zippered snowpants. Once we had those, we went and got Giraffeboy a pair of Neos Overshoes to wear as boots, and he was set to go.
Looking back now, it doesn't seem like that big a deal, but at the time, it almost seemed like this huge obstacle. It is like that with so many of the things our kids and families face. I wanted a way to be able to share the feelings and the experience at the peak of the problem, so that another mom could read it and know they weren't alone, and so that those who love us could get a glimpse what it is really like.

We went through the snowpants ordeal again this year, but it was so much better. Giraffegirl could use the original homemade side zippered snow pants and Neos we had for Giraffeboy. And adult side zipper snowpants are so much cheaper than the specialized kids ones, so we could afford to just buy Giraffeboy a pair without worry. And best of all, Giraffeboy recently mastered tying his shoes, so we didn't even really need to get him special boots. Mostly though, I had the experience of the first time and the answers we used so I skipped that whole overwhelmed Momma feeling. And I knew that if I needed her too, the Super Sewing Woman and family had my back and would whip us up just what we needed. And I am grateful everyday for the extended family and friends who are always willing to help bail me out of any situation. And for the other Mamas out there who blog about their experiences and help me feel less alone.