In this Rett Syndrome journey hospitals and complications and death become commonplace. We hear of an angel passing and earning her wings almost weekly. A rare disorder, Rett Syndrome binds so many families from all over the world into one giant, loving, understanding extended family. We need to lean on each other for support. Many times questions left unanswered by doctors and specialists are answered between parents and caregivers. Its a family you never hope to join but once you're forced in your embraced, supported, cared for and loved. When one of our girls leaves this earth we all grieve. We grieve for the parents because we can see ourselves in them, we grieve for all the children suffering from Rett Syndrome because we see our own daughters suffering. One child is no more important than the next, however, my grief for Anna hit deeper than I've ever felt before.
Maybe it was because we had the pleasure of meeting beautiful Anna and her wonderful family when we visited Montefiore hospital a few years ago. We met in the hallway of the clinic, each with our Anna's and exchanged phone numbers. The next day we spent the entire day with the Gutierrez family as we talked and chatted and watched our girls in their similarities and differences. I remember little Anna trying to grab at my Annie's shoes as if to try to take them off, I remember thinking "what awesome hand function!" - a typical Rett mom response. Maybe it was the connection that we made with Manny and Stefanie, Anna's parents. The type of people who open their home, drive you to the airport so you don't have to pay for a taxi and feel like instant friends, like you've know each other for years. Maybe it was because we remained friends, chatted back and forth about GI issues, struggles and prayed for our girls and our families. Maybe it was because they did everything right - accepting only the best care for Anna, clinging to their faith, marriage and family and tirelessly raising awareness and funds for Rett Syndrome. Maybe it was because Anna struggled so much in her battle. Or maybe because she was only 4 years old. Or maybe it's because I wonder why their Anna was chosen to come home and not mine.
Gods ways are not our own. There is so much suffering in this world and dealing with Rett Syndrome you move to the forefront of that suffering and helplessly watch it attack. In a world filled with greif it's easy to see why people question God. "If he's loving why does he allow all of this". I don't know the answer but I do know that He promised that life would be hard, that we would have trouble, but to take heart, He has over come the world (John 16:33). And that ALL things work together for GOOD for those who love and serve the Lord (Romans 8:28). I hang on to these promises and they help to ease the sting of this life and this disease.
Little Anna is free. There is no Rett Syndrome in heaven. I imagine her with all of her sisters dancing on strong legs without braces and singing with the most beautiful voice imaginable. She is home, she is filled with joy and there is no pain left in her body. The ache comes from the family she left behind. I can't even begin to imagine the pain, the vast empty hole that is left in their hearts that will never truly heal until the day they meet again. I can only imagine how empty their arms feel, no parent should ever have to bury their child, but 4 years of hugs and kisses is scarcely enough time for all the love they have to share.
Anna's passing has made me put my own life in check. Living with Rett Syndrome you certainly don't take much for granted, however, we can all get comfortable. Too comfortable. And you forget to praise God for 3 children that woke up this morning for the simple fact that they are all breathing. After 5 months you forget to say "thank you" for another day without a seizure, it's just become the normal. You forget that the cold your daughter had didn't just "run it's course" but it was God who healed her and spared her from the pneumonia she is so susceptible to. And the surgery that she recovered from so quickly, well she had a great surgeon but it was God who steadied his hand. Every ounce of every day should be spent in Thankfulness because even through the rough days we are covered by His grace. And every chance we get we need to show others how much we love them, especially our children. We never know when any of them will be called home but when our girls get diagnosed with Rett Syndrome they automatically move closer to heavens gates. We need to take the time to hug our kids, not just before bed but whenever they're within arms reach. We need to kiss them and tell them what a treasured blessing they are. To read them that extra story and lay down with them in their beds at night to just get a little more time in. We should skip the dinner dishes and snuggle on the couch without worrying about bedtimes and schedules. We need to drink our kids in and study every single inch, committing to memory their everything. I will not allow myself to get comfortable again, lest another angel be taken from this earth too soon to show us once again how precious this life is.
God Bless the Gutierrez family who's lives are forever changed. I pray that our Lord wraps you up in His healing arms and gives you the peace and comfort that surpasses all understanding. We love you all and will never forget sweet Anna. She has shown the world so much and we will continue to fight the Rett monster in honor of her.
Held - Natalie Grant from Comunidad Cristiana on Vimeo.
To learn more about Anna's story and a clip of her and her family on "the View" click HERE
