Friday, November 30, 2012
December is just beyond the next vitamin dose. In the midst of wonders surrounding this holiday season my mind struggles as I try in vain to not replay the events that were happening in our lives just 2 short years ago. Joe and I were beginning to have to think about saying our goodbyes then, as we watched the strength of our always life-over-filled girl fade away. Hospice nurses became a part of our daily routine while we were still pleading with God for a miracle. She rallied when my friends from church came and sang her Christmas carols, whooping it up for Rudolph the Red nosed Reindeer. But December 7th, 2010 is engraved on a tombstone in a small cemetery with her name on it. I know because I was there the other day. We brought the girls out to take down the autumn wreath and replace it with a small Christmas tree. It has multicolored solar powered lights and we each picked an ornament to put on the tree. Sometimes I still have to go to the cemetery just to be sure this isn't just a big misunderstanding. It still seems like she can't really be gone.
I suppose most people assume by now we've moved forward. I'm tired of saying it hurts as much as people are tired of hearing it hurts, so we do each other a favor and pretend we're all fine now... but let's be honest... 2 years was yesterday, and still will be tomorrow.
Despite the Malia sized gap in our hearts, life does keep moving and we with it. Madi has really blossomed the last few months. At 9 1/2 years old, I cannot believe how tall she's gotten! She's outgrown Malia which is strange in so many ways. We've had to buy all new clothes because none of Malia's clothes fit her anymore. To be honest I'm glad for that. Laundry was incredibly hard for me. Each item of clothing would bring flashbacks of memories from a day she had worn it. I'd find myself clinging to one of her t-shirts, jeans or sweatshirt while standing alone in the middle of the basement -tears streaming down my face, swearing at the laundry and all it's painful memories. For now Malia's clothes are put away and it's back to Madi's clothes I'm folding. I'm so proud of Madi's laughter and quirky humor, for her creativity, sweet spirit and joy in life. She misses her big sister, and lately the girls have both been talking a lot more about Malia again. I wonder if the "anniversaries" are hard on them too. They don't seem sad, just reflective. When we told them we were stopping out at the cemetery the other day Madi says, "Oh good! We haven't been there in awhile." Malia is showing up in pictures they draw and stories they write and even in play time. Yesterday 5 year old Marissa wanted to pretend that I was God and she was Malia. At first I was about to decline (how could I possibly play the role of God? Talk about big shoes to fill), but then I realized what a great opportunity it was to give Marissa Joy a glimpse into what we know of heaven. So we pretended to play together there as I showed her around the city, we swam in the crystal sea, slid down rainbows and I spun her in happy dizzy circles the way I would spin Malia when she was little. Turned out it was good for my heart to picture Malia enjoying God's company too.
I still struggle with trying to find the balance between keeping Malia's memory alive for my other kids, with needing them to know they are no less valued rhan she was. I wonder what it's like to live in the shadow of a sister as well known and well loved as Malia was to so many people. Yet, I think they are secure in who they are and know their value. They certainly get enough hugs and kisses. Joe and I can't keep from smothering them with affection. The gifts they are cannot be taken for granted after the losses we've experienced in life. I guess all we can do is the best we can and pray God fills them up in all the places we fall short.
I wanted to do Christmas Cards this year but the thought of taking family photos without Malia in them was harder than I expected it would be. We found some ways to incorporate her into them though, which helped my heart a lot. In a few pictures her favorite stuffed toy (Picachu) stood in for her, in others I wore one of her hot pink flowers on my lapel, and in the Christmas card photo, we actually held a life sized photo of her. Next time maybe I'll be ready to take pictures without her in them.... but I'm not there yet. Have I mentioned this grief thing is hard? Here's our Christmas Card direct to you and your family...
Please pray for all of us in the coming week. This upcoming anniversary is going to be tough, but we always find strength through your prayers when you lift us up. Thank you for continuing to follow our story.
Saturday, June 16, 2012
I still follow the journeys of several kids that were struggling in the fight against cancer when we were. So far all of the one's we know personally are doing great and are in remission! Some are even a couple years out of treatment. Yesterday we got word from our final friend still in the fight. Her treatment plan was 3 years long! The girls were diagnosed almost at the same time and we spent many times at the clinic or in the hospital at the same time as this family. A picture of the two of them is still on my fridge (I included the picture here) and helps me to keep praying them through. She is now cancer free according to her tests and almost completed with her treatment!! As I read her caring bridge update I praised God and laughed with the joy of their celebration of life then begin to weep as again the questions of "Why" came rearing up their ugly heads again. Why not Malia Lord? Why did her treatment fail her when everyone else we know still hugs their children goodnight? How could you allow this to happen to our family?
You see, our faith is strong, but our parent hearts can be weak. We do not believe that God "gave" Malia cancer or that he "took her" away from us. But in moments of weakness our hearts cry out for an understanding that we will never have this side of heaven. We live in a fallen world where bad things happen to good people. It sucks. It's harsh. But it is life. God does sometimes chose to rescue people out of extraordinary circumstances, and sometimes he allows life to play out. What we know to be true is that God has been present in our pain and that Malia is better than ok now. In our earthy perspective her illness and death don't make any sense but God does not have an earthly view of our lives. He has a providential one. He sees our life in the light of his eternal plan, and somehow in that grand design He has used our pain (not caused it) to His glory. We know this is true, but somedays it's tempting to just give in to the hurt and feel a little sorry for ourselves.
Then I'm reminded that we are not alone in our pain. The grief group we went to helped me understand there are many people navigating though the dark days of grief and clinging to the hope that only God's love can offer. Last week an accident brought sudden heartbreak to a family we know of. Praying for them has made my heart so heavy for all I know they are going through, and for all the things they are experiencing that I do not fully understand. I'm realizing looking back to the first blogs I wrote how far we have come. The blinding pain of those first few weeks and months has changed into a hurt that most days feels manageable, and I realize that healing did begin to happen over time. But the process is slow and I am thankful for all of you who have not forgotten us along the way. Please keep praying for us, our kids and right now especially for the family I mentioned who is desperately missing their baby girl tonight. We need to borrow your strength.
Lastly~ just an update on Rissa. As I put in the last post the GI specialist told us she would need surgery. When we saw the surgeon, however, he said we should wait it out for awhile to be sure that what they saw on the ultrasound is actually a stone in her gallbladder. Apparently, when they have done surgeries based on the finding in her ultrasound sometimes a stone was present and sometimes there wasn't. SO ending on some good news- for now there is no surgery scheduled!
Wednesday, May 23, 2012
It was such a gift to me to see Madi interacting with other kids. With her autism, I see her deficits in communication at home, but rarely get to see her with groups of kids her own age. Once again she surprised me at her ability to compensate for the areas where she struggles. We had such a great time together. She was right there with the other kids laughing and skipping and begging for treats. :) Hanging out with Madi is like falling in love. She makes my heart smile and my stomach flutter.
Yet in the midst of the joy yesterday held, I was thankful for my sunglasses that hid the tears that often threatened to fall. The last time I was at that zoo it was with Joe, Malia, Madi and Marissa. Malia had just finished up a difficult hospital stay and had a hard time getting around. But she still pushed herself to get though all the indoor exhibits and the beautiful memories of having my three girls together washed over me. When our little group of 6 kids walked past the tropical area yesterday my chest tightened as I remembered how Malia had lost her balance on a steep part of that trail and fell. Her leg braces protected her shins, but her knee was hurt and I hated the pain she had in her face. This was a girl who never fell. She was embarrassed and frustrated. Just a bump, but on top of everything she was going through it broke my heart.
That's the thing about grief. Malia has been gone from my sight for almost 18 months and I am still not beyond the "firsts". I thought that once we cleared a year of life without her there would be fewer firsts to move past, but they are still continuously around me. The first zoo visit, the first water park day, the first amusement park day. I often find myself in the middle of doing something and think, the last time we did this she was here. Then again, some of the seconds weren't any easier than the firsts were. I was a mess on Mother's Day this year, but don't remember last year being as difficult. I'm trying to allow myself to be OK with whatever emotions I feel at any given time. I can't control them much anyway, so I hope that by riding the wave instead of pushing against it, I can ride it a little further into healing. I am thankful for summer sunshine to warm my face and sunglasses to hide behind though.
Because my family seems to be surrounded by medical oddities, we now have another one to navigate through. We've been doing annual abdominal ultrasounds on our girls because of Malia's cancer history. There can be a higher risk for siblings and there are no early warning signs for Wilm's Tumor (the childhood kidney cancer that Malia Grace had). They last had ultrasounds done in March. The doctor called with the good news that the girls had no signs of Wilm's and the bad news that Marissa (my 4 year old) had a gallstone. What? How random is that? Reading through the risk factors for gall bladder problems, my 4 year old does not fit into a single category. Our pediatrician referred us to a pediatric GI specialist from Children's who has now referred us to the surgical group. She needs to have her gall badder removed in order to avoid on-going problems. I have to admit I've been struggling with questions like, "WHY, Lord? Can't we have a break? Can't you spread out the pain for awhile?" Poor Madi was very worried when she found out Marissa needs to have surgery at Children's. It took some serious convincing to assure her that Rissa will be fine, and will only need to stay in the hospital a couple days... and that she does not have cancer... and that this was not going to happen to her. Our kids have been through so much emotionally and it's difficult to believe that we are already being asked to do another hard thing in life.
Satan would love for me to be angry. But God has already brought us through so much, if anything my faith in his ability to care for us is stronger than ever. I have been reminded of God's grace in that although we've been told Mariisa has to have surgery, it will be a temporary pain. Since we found the stone before she had symptoms she will not need to endure weeks of nausea, abdominal pain, infection and misery while the doctors figured out what was wrong. We were also spared the worry of thinking she had cancer when her stomach started hurting so badly. I was amazed at how strong Marissa was at the doctors office. She did whatever was asked of her and when they drew some blood work, she sat on my lap and watched without even flinching. They missed her vein on the first try and had to dig around without luck so I thought the second time she would cry and fight it (as a pediatric nurse I can tell you 99% of kids do). She just held out her other arm and said thank you when the tech was done. She has some of her oldest sister in her for sure. Like Malia, Marissa is full of grace. She will do just fine with her surgery.
Malia's garden is already blooming it's heart out and it's beauty brings peace in a crazy world. God has reminded me there over and over of His love for us and His love for Malia. He is ever present in the tough stuff of life and has sent so many friends to love us with His arms along the way. Thank you for your continued prayers and encouragement. Know that we are eternally grateful for every one of them.
Life isn't about waiting for the storm to pass... It's learning to Dance in the Rain!
Friday, February 10, 2012
Friday, January 20, 2012
Friday, January 6, 2012
I was watching Ellen on TV a few days ago. I love her. She is so stinking funny. She is generous and entertaining. She appreciates great music and makes people smile. On the show I watched as she surprised an unsuspecting family from the audience struggling financially with $30,000 worth of amazing gifts. The family wept, the audience cheered, jumping up and down, truly celebrating the moment with the deserving family. I felt myself caught up in the excitement too and while smiling ear to ear saw my hubby across the room with the same look on his face.
Then it hit me, like a bolder being thrown from the moon onto my head. We celebrate our stuff. We glory in our jobs and our homes, cars, and toys. We work hard to pay for our vacations and technology. We cheer loudly when people are gifted with things beyond their wildest dreams. For the family on Ellen. For a woman who wins the lottery. A young couple winning a car on a game show. A man who is reunited with a beloved car he had as a teen. It makes us happy to see people get the things they really want.
But what if what we really want we’ve lost sight of altogether? What if it’s beyond our ability to see over the things that have accumulated around us?
I miss Grace. More than anything I can describe. The experience of grief is like a volcano. It burns hot and is boiling, spitting, and moving beneath the surface of my external body which appears from the outside to be stable. At unexpected times grief bursts out, spilling over me along with the tears of longing. It hurts. It burns me and reshapes who I am as the molten lava cools. I can’t predict it any more than I can control it. I want it to be over. I want it to stop.
Someone told me recently she knew someone who “went crazy” after her son had died. Without hope I can understand how easily that could happen. But I do not mourn like those with no hope. That is what gets me from one day to the next in the midst of the burning pain of loosing her. On the other side of this life there is another. I am as confident of this as the truth of waters ability to be frozen into ice. It looks and feels different, but it goes on. It takes another form.
Heaven is a promise. That promise holds my little girl, my best friend, and many others who I love so very much. I’ve been reading everything I can get my hands on lately about heaven. It’s safe to say that my heart wanders there often. Dreaming of what the promise of heaven holds, not in terms of a dreamland of self-fulfillment, but of the fulfillment of God’s perfect plan. To be everything God created me to be but fell so short of here on earth. To indulge not in the glories of heaven but in the maker of it all. To experience the greatest reunion of them all.
The family on Ellen will love the stuff they got. It will make them happy for awhile and may help relieve some of their financial strain for a time. But like every thing in this world, it will all eventually break and fade and end up in a junkyard somewhere. The people in the story aren’t junk though. They are beautiful creatures made in the very image of God. They are pursued with passion by Jesus Christ. He bought them on a cross to give them the gift they truly desire. Whether they know it or not (and I pray they already do), heaven is the only gift that keeps on giving, and it’s only a gift Jesus has the ability to give away. It is his alone to hold. The same love that kept him on a cross is the same love that offers heaven’s promise to us today. Acceptance of the gift is required. The price has been paid but there is still a choice to be made. If you haven’t ever accepted the gift Jesus offers, say a prayer today. It isn’t given to perfect people, it’s given to humans. None of us is good enough to get in on our own. More than anything else in the world what I want is to have you there with me. I will jump and cheer and high five everyone I know to hear you got what you really wanted.