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!
I love, love, love you!!
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