Today has been another “ok” day. Brent is so ready to get back in the swing of things with going to school and doing his routine. He loves a schedule and if it gets off track, he does not like it. He is thriving and I am so happy for him that he is still fighting his disability He is one tough teenager!
X-linked hydrocephalus (L1 syndrome)
**September is Hydrocephalus Awareness month**
Hydrocephalus is referred to as water on the brain. The water is called cerebrospinal fluid (CSF), a clear liquid that is produced in the 4 ventricles (cavities) of the brain.
My boys were diagnosed with Hydrocephalus at birth.
Congenital hydrocephalus accounts for approximately 50% of all forms of hydrocephalus.
It has been an “OK” day. Brently had surgery 2 weeks ago this past Monday. He had to have a G-tube – (feeding tube) revision because of infection that spread throughout his abdomen due to some complications in changing out the tube. He is home bound for 5 more weeks due to more infection and I can’t risk him getting any worse.
It has been 20 years since I have been out of school and nothing has changed about Special Needs… I will probably make some people upset but ya know, it does hurt to know that special needs children are left out of everything. The only thing they get to look forward to is Special Olympics that happens once a year. There should be more structure and involvement within the school system and with the typical children as well. Their should be churches willing to go the extra mile to help a person that has special needs regardless of the disability if in a wheelchair or not. Everyone is always talking about how great their school and church is but no one is helping the ones that need it most. Where is the love in that?? God knows my heart and knows how this hurts me and other parents when their children feel alone. I am not saying that my child feels alone. My child is non-verbal. I am making a point that if you are gonna brag about how well your school system is, then mention the Special Needs classes as well and give funds to help that department as well. Include these kids as much as you do the typical! I understand that life is not fair. I am just tired of these children being left out. In my opinion it’s just not right!
My prayer is that people will be willing to open their eyes and see that children with special needs are just as important as typical children. I have learned through the years having both of my boys that patience is a must! If people would just slow down and listen and pray and give their all for: 1) to God. 2) their family. 3) church. 4) ALL Education including Special Education, I believe you would see more parents bringing their children to church and being involved but it will not happen unless we as a whole reach out and let parents know that they are welcomed and included within the schools and church.
This is how my heart feels today.
I pray God will soften the hearts of the ones that see no need in these situations and that He would give them a heart and desire to include these precious children, parents, and adults and not leave them out just because they have a disability. I pray also that God would allow me to continue being an advocate and never allow me to give up and to stand in what I believe in and through Him and for Him alone to receive the Glory for it all. God, You gave me children that face a constant battle everyday with no cure and I am thankful everyday for that because You keep me grounded in Your Word. One is now completely healed. One is continuing to struggle with life and God, it’s not easy. You never said it was going to be but, You are there to walk with me through times like these and I again am so thankful because I can’t do this alone. I pray for the parents that struggle daily with the needs of their children and the adults that need help physically and are not accepted. God, cover us with Your loving arms and help us to feel you as you surround us in our daily task. It’s in Jesus Name that I pray, Amen!
I ask myself these questions from time to time now. How does one celebrate for one child and still continue to mourn the loss of another child? Can I be still be happy for the one I still have here with me? Will this sadness linger on forever?