School is in session here at the Slade house. We still go to the pool for a dip to cool off after homework is done. Our swim suits and beach towel's are on hooks ready ~ But yes the schedule has changed. Organized focus, early bedtimes, homework. All that comes with letting go of summer. HA!
Beth hit 7th grade with her typical independence streak last week. Confident, secure, READY. But then she got her schedule and went to class. Now- very frustrated with the new AP classes and changes to her routine. They went from 37 kids, an intimate number of kids, to over 90. Beth is no no-nonsense. Serious about school and committed to learning. Full of passion, zeal and soft spoken high level of emotion underneath as well. The first day of kids cracking jokes, farting in class about pushed her over the edge. Still working this one out for our oldest. Teaching, coaching, re-directing, guiding, this pre-teen. Letting Go for her feels different for our first borne.
Ethan our middle child started 5th grade. (his last year before middle school) He is a riot. Talks non stop, trying to get us to pay attention to him or should I say remind us he is here and needs heard. He was mad for three hours that none of his buds were in his class (first time ever) When he heard me on the phone with Dad saying we may need to go ask him to be moved. He surprised me big time. "I want to try it for a week- I liked him and I think I want a man teacher, let's wait and see what the first week brings" He LOVES his teacher. When I saw his bio about half way thru the week. I saw he was exactly where he needs to be. Ethan is tender, considerate, full of boy energy and trouble sometimes. I saw that he wanted to be listened to what he needed. Ethan he is becoming a good judge of what he "wants" I am really glad I let go...
Then there is Tommy. Our 27 pound almost six year old with Russell Silver Syndrome. (He is the size of a three year old) Tommy started Kindergarten this past Friday. He just started to grow, thanks to his GHT daily injections, we are seeing signs of progress. Understandably he is still my "baby" Letting Go with him is always touch and go a daily adventure. I know he is ready for this next step. Tommy is in a stage of wanting to be a big boy. He doesn't want to be a baby. He is gifted and full of life. He can play a song after hearing it one time on the drums. He brings joy into EVERY ROOM he walks in. His teacher sent me the following e-mail today about me helping him at the beginning of class today, which caused me to blog these thoughts.
Hello! I am thinking that you can say your goodbyes outside and we will help him. He seems really into "doing what the other kids are doing." He did a great job today and seemed to really take cues from friends if he wasn't sure what to do. I wouldn't let him play basketball today with the others. He wasn't very happy with me, but I didn't want him to get bumped as they were running into each other alot. I hope you have a good evening.
Denise
Denise L. French, M. Ed.
Some things we really do need to let go and let the growth begin in our kids. Other things it's a process of Letting Go and seeing them grow and reach the potential locked in them waiting to be awakened in life. I am not an expert at this yet. I don't have all the answer's. It's a new journey of understanding the unique needs and personalities and what they need. Letting Go is not easy but important as we raise them to be confident and secure in who they are in Christ. I am learning one day at time.
Love Lissa+
I went to a much needed lunch with a friend who's journey includes loving and advocating for her special needs children. Although feeling VERY refreshed from the beach last week and some personal adjusting I am doing, I found myself sensing another breath blowing over me, as we "shared life". We share faith, family, and the journey with rare disease. There are many other commons. The way we get drained and exhausted in the fight to help, support and get the adequate care. I found myself thinking about the many out there like myself and her that might not understand, or forget the need to refill their own tank.
When we are dealing with the complexity of navigating care, an advocate, struggling with financial challenges that come with rare disease often, or a mom, balancing the demands of life. All is very relevant in the daily life. Sometimes we need to adjust focus to give attention to the needs or lack of attention to our own bodies. Physically, Emotionally, and spiritually. Often we need to also enlist others to come alongside and confirm things with us.
I knew for awhile that I was neglecting me in CERTAIN areas. We went on a fast pace from May of last year to now to fix the needs that Tommy had to get and quickly. We did what would have happened in 2 years in about 8 months. CRAZY..... 39 appointments....There was a lot of grief I buried in the fast effort to fix the injustice of a broken system. I just kept saying" God will provide" But I buried alot of disappointment, anger, and feeling of loneliness. I actually had someone who did not get it make an insensitive comment that "Your situation was just not as bad as others" When I finally confessed this to a trained counselor. They poured out compassion, understanding, care to broken hearted mom who needs some love and understanding and medical help to get back. I am coming back and will be stronger from the weak moments that have come my way.
Moms~ who are in the fight to care and advocate for the rights and needs of our very special kids. DON'T FORGET YOU. It's OK to ask for help. It's alright to say- I need someone to come alongside me, lift up my arms and get me to the other side. You do not have to be supermom. There is a you inside that needs nurtured and cared for. Find people: counselors, Dr's, people who have experience with this unique journey. Sometimes it requires pulling away to re-charge. Other times it's adjusting. Personally I am adjusting. I am taking steps to re-fill, adjust, and fix the things that got neglected and tapped out. I am choosing people to hold my hand, walk with me, understand, love, and respect this very unique journey.
I am being reminded that there is REAL VALUE to the shared life, the open life and doing life together. Our society is so busy and we forget to invest or make time for the things we need. ONE ANOTHER. There are many who have stood with me. Praying, believing, and hoping for what we needed. So weather your on the special needs journey, or anywhere else in life. Find someone to share life and come alongside and breath on you. The person probably has been there and done it before you and can share the experience and help you too!
Your life will be richer as you do.
Love +Lissa
Today we celebrated great successful news in our fight to get Tommy the treatment that can change the outcome of his genetic rare disease, Russell Silvers. There has been VERY LITTLE growth in his sweet body for the past few years. His bone age has him at a 2 1/2 year old, he turns 6 in September. I was considering the roller coaster we have been on in the fight for adequate care, after his miss-diagnoses here in Jacksonville. The last six years have brought moments of loneliness, isolation, exhaustion, and grief that is very different for a mom who has a special needs child. I have not found myself mad at God for the intense season we have walked through. I can say- that many a questions have been asked on how, why, and what do I do now.
Over the last year we have been on the fast track of fixing the mistakes to get him care. Many success's, a lot of forward motion to get us headed where we needed to get results in getting him to grow. Today was the answer to many a question's and fighting to help him. IT IS WORKING... our sweet boy has officially grown. Such great news for our family and the many who have prayed for us, stood alongside and tried to support us in the journey.
One of the few people who has reached out me and has the experience of having children with special needs sent me a text in response to the news: "We are in it all together. Way to many special needs kids out there" :-( " Her words of affirmation and celebration struck a cord deep in me. In the celebrating I found myself pondering... The many in struggle around me. In my own hour of celebration and joy others around me looking at grief and sorrow. Our lives are so different, unique, and reflection to others around us. The life we are walking out is filled with all celebration, joy, grief, and sorrow. My own understanding of this is has been greatly challenged in the last five years. I had not known or experienced the deep place of grief that silently crept in thru injustice, and having to FIGHT with all I had to get Tommy what he needed. Exhaustion, GRIEF, Disappointment in man, Weariness, had taken a toll that I could not see with my own eyes. Very few could understand this need in me over the past few years. I found that sometimes we need to just ask for help, understand we are not suppose to do it alone. We have God- We have each other to lift up our arms in the weariness.
Within a few short hours of our celebration, news came in of the loss of yet another precious part of our family at church. His courage's battle with cancer was over and he is now healed and whole with Jesus. This precious mother and her three sweet girls lost their husband and dad forever. While grateful, grief will be very present as they experience the loss of one they love so deeply.
Celebration and joy in our home, grief and sorrow in there's. The body we love around us in such different places. We know that the word says he orchestrates and sets all things into motion. I think of the song by Hillsongs. "Desert Song" In every season, I will praise, I will declare God is my victory and he is here. All of my life in every season, I have a reason to sing. you are still God. I have to admit, singing this song over the last year has not been easy, but I have chosen to worship him in my own season of grief. I can't say it disappeared entirely. I can say this. Choosing to worship him and stay in his word did keep and comfort me in his very present presence. In this, he directed and helped me to understand and occupy till I saw the victory. Which is FINALLY here.
So my challenge to you is to look around you and see who needs you to step in and share by celebrating, praying for the deep sorrow, and grief. Many around us need us to come alongside to stand, pray, encourage, love, help , believe. I needed it and I promise you, I am coming back thanks to the ones who correctly heard and obeyed his voice to help me in my hour. And now we celebrate and have joy again! Hugs on the journey, With all my heart, Lissa
I am thinking that you can say your goodbyes outside and we will help him. He seems really into "doing what the other kids are doing." He did a great job today and seemed to really take cues from friends if he wasn't sure what to do. I wouldn't let him play basketball today with the others. He wasn't very happy with me, but I didn't want him to get bumped as they were running into each other alot. I hope you have a good evening. 