My last post written on February 20, 2014 titled "Afternoon Coffee," seems poignant now. The post was written to Luisa who slept quietly in the room next door. I ended the post with these words:
"Where will you be when I am old and retired, sitting by your father's side? Maybe we shall take coffee together. I will enjoy your beautiful face, my dear. And all the stories you shall tell me...."
Today these words are one big lump in my throat. Luisa has Rett Syndrome. And while she certainly will have many stories to tell in life, because of Rett Syndrome her brain and her body will not connect normally and she will struggle to communicate with anything but her eyes.
I wrote the last post back in February while I pushed away worry. I wrote it as we saw signs of Luisa slipping into her own world. The few words she had at 12 months disappeared at the end of February and her babbling stopped. She seemed withdrawn and preferred crawling around the house, touching but not playing with toys. Tony and I would come and go and she no longer seemed to notice. She was irritable and no longer enjoyed cuddling or being held. She would drop things off her high chair and no longer peer over to find them. She stopped waving, playing patty-a-cake, and peek-a-boo. Everything pointed to autism but yet, she smiled and made eye contact. She was still seeking our approval when getting into something new. She was not fascinated with a particular toy or light. She wasn't performing self-stimulating behaviors like rocking or hand flapping. And then there were her feet - thin, small, not growing, and frequently a deep, deep shade of blue. Her feet troubled me greatly.
I wrote the last post back in February while I pushed away worry. I wrote it as we saw signs of Luisa slipping into her own world. The few words she had at 12 months disappeared at the end of February and her babbling stopped. She seemed withdrawn and preferred crawling around the house, touching but not playing with toys. Tony and I would come and go and she no longer seemed to notice. She was irritable and no longer enjoyed cuddling or being held. She would drop things off her high chair and no longer peer over to find them. She stopped waving, playing patty-a-cake, and peek-a-boo. Everything pointed to autism but yet, she smiled and made eye contact. She was still seeking our approval when getting into something new. She was not fascinated with a particular toy or light. She wasn't performing self-stimulating behaviors like rocking or hand flapping. And then there were her feet - thin, small, not growing, and frequently a deep, deep shade of blue. Her feet troubled me greatly.
We started Luisa in occupational, physical, and speech therapy. Sessions were discouraging as she fought us to participate - bucking her head, crying, refusing to attend to the task. At 19 months she finally stood up on her own. I was so relieved, joyous, proud. Maybe she would catch up after all! At the end of May she began to come out of her shell. She was engaging with us more. Once again she enjoyed reading in the rocking chair and she participated in therapies like a champ, although exhaustion was always a factor.
Even after these improvements, I watched her like a hawk. I sat on the floor and just stared, worried, cried. I knew, deep down something was not right. We worked on not throwing her cup, handing things to the therapist, holding on to the swing. Looking back her inadequacies in these areas were signs of Rett Syndrome. I had googled her symptoms and Rett Syndrome turned up time and time again. I prayed everyday for the trial of this devastating disease to be passed from our family. I prayed everyday. And then one day I added, "but it if is Lord, surround us at that time." I believe the Holy Spirit was preparing my heart.
I watched video montage after montage on the internet of beautiful normal babies becoming trapped, unable to use their hands for the constant wringing/tapping/hand washing, many unable to stand up or walk. I watched these videos and I cried. Surely not Luisa. Then one day I found this website and in it were "featured angels," girls living with Rett Syndrome. These girls are beautiful, cherished, and a part of their family and community. They smile and there is intelligence in their eyes. I began to feel less anxious, believing that if this was to be our course, God would give us the strength, the community, and the support to find our way.
On July 17th Luisa's DNA testing came back positive for a mutation on the MECP-2 gene. Her particular mutation is associated with causing Rett Syndrome. On July 3rd we visited Dr. Alan Percy and nurse Jane Lane at the Rett Syndrome Clinic here in Birmingham. These two medical professionals are world-renowned for their work and research in Rett Syndrome. They confirmed what we already knew. Luisa has classic Rett Syndrome. We walked out of that clinic changed but I know our love for our family has not changed but will only grow from this point forward. God is most profoundly the same; not shaken by Retts, not limited in any way.
On our wedding day Tony and I stood at the altar and held eachother's hands as we sang the hymn Great is Thy Faithfulness. It has appeared time and time again on poignant days/events in our marriage. The Sunday before Luisa was born we sang it together in the church balcony, her cocooned tightly within me. I will end with this hymn, claiming it's promises, knowing He is all-sufficient, and always good. Luisa is His and I'm grateful He has given her to our family. We will love her, care for her, teach her, protect her all the days of our lives. Sweet Luisa Ray.
Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today, and bright hope for tomorrow
Blessings all mine, with ten thousand beside
Even after these improvements, I watched her like a hawk. I sat on the floor and just stared, worried, cried. I knew, deep down something was not right. We worked on not throwing her cup, handing things to the therapist, holding on to the swing. Looking back her inadequacies in these areas were signs of Rett Syndrome. I had googled her symptoms and Rett Syndrome turned up time and time again. I prayed everyday for the trial of this devastating disease to be passed from our family. I prayed everyday. And then one day I added, "but it if is Lord, surround us at that time." I believe the Holy Spirit was preparing my heart.
I watched video montage after montage on the internet of beautiful normal babies becoming trapped, unable to use their hands for the constant wringing/tapping/hand washing, many unable to stand up or walk. I watched these videos and I cried. Surely not Luisa. Then one day I found this website and in it were "featured angels," girls living with Rett Syndrome. These girls are beautiful, cherished, and a part of their family and community. They smile and there is intelligence in their eyes. I began to feel less anxious, believing that if this was to be our course, God would give us the strength, the community, and the support to find our way.
On July 17th Luisa's DNA testing came back positive for a mutation on the MECP-2 gene. Her particular mutation is associated with causing Rett Syndrome. On July 3rd we visited Dr. Alan Percy and nurse Jane Lane at the Rett Syndrome Clinic here in Birmingham. These two medical professionals are world-renowned for their work and research in Rett Syndrome. They confirmed what we already knew. Luisa has classic Rett Syndrome. We walked out of that clinic changed but I know our love for our family has not changed but will only grow from this point forward. God is most profoundly the same; not shaken by Retts, not limited in any way.
On our wedding day Tony and I stood at the altar and held eachother's hands as we sang the hymn Great is Thy Faithfulness. It has appeared time and time again on poignant days/events in our marriage. The Sunday before Luisa was born we sang it together in the church balcony, her cocooned tightly within me. I will end with this hymn, claiming it's promises, knowing He is all-sufficient, and always good. Luisa is His and I'm grateful He has given her to our family. We will love her, care for her, teach her, protect her all the days of our lives. Sweet Luisa Ray.
Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today, and bright hope for tomorrow
Blessings all mine, with ten thousand beside
Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see
All I have needed Thy hand hath provided
Great is Thy faithfulness, Lord unto me!
Morning by morning new mercies I see
All I have needed Thy hand hath provided
Great is Thy faithfulness, Lord unto me!
4 comments:
Oh sweet Sarah, so many prayers for you, your precious girl and your family. Trusting The Lord to cover you under his wings with inexplicable comfort.
I found your blog through Gina in Tyler. Praying for your beautiful little girl and your family. I have a very special friend whose daughter is 4 1/2 with Rett's. Libby is beautiful, happy and brings great joy to anyone around her. Your daughters smile is radiant! Claire Cozad
Sarah and Tony, you are in our prayers for strength, peace, comfort, and direction on how to help Luisa. Your mom and grandparents are in our prayers too---this affects an entire family. God could not have given this precious little girl to a more loving, praying family! I have faith that you will get through this, and many blessings will come from it. We love you!
Beautiful. Your daughter and family are beautiful. Psalms 139 talks about the intimacy of our Lord and that "...in [His] book were written, everyone one of them, the days that were formed for [you and your family]..." even in the diagnosis. His plans are good and He loves your family.
Praying for you and so incredibly glad to call you friends. Much love!
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