(Insert Creative Title…too tired to figure it out)
I have been so busy I can’t see straight. It is probably a good thing I have been so busy. When I am on the go all the time it makes it easier to hide the hurt and pain. This year is so tough. Why is it any different? His birthday on the 18th is what changes things. He will be 5! I can’t believe it! Jett was already in school for 3 weeks before he turned 5. 5 is a big age to turn. It is when they turn into big kids. They start loosing teeth. They ride their bike without training wheels. They learn how to write the whole alphabet. They LEARN LEARN LEARN. They turn from toddlers to school boys so fast. I remember when Santana was 2 and a half and my support coordinator was like, “We need to schedule a meeting for school.” I thought she was CRAZY that Santana whom could do absolutely nothing was going to go to preschool. Today I signed his IEP (no formal meeting… nothing really to fight for) and I wanted to cry. He goes to kindergarten next year. A whole new school. A whole new teacher. And that scares me. Jacci has been amazing for Santana! Absolutely amazing! I love her to death and I love that she too has so much hope and belief in Santana and plays with him as if he was the typical preschool child. I am scared to have him leave her. I don’t think another teacher will care for him as she has. I don’t want preschool to end. I don’t. I will miss it dearly. The therapist are great… but most likely I will be seeing them at the other schools. So I don’t think it will be goodbye for them. It is sad to think He will be going to kindergarten and not fighting back tears and wanting to stay with his mommy that first day… like Jett did. Then there is the sports side. Jett is starting his 3rd year of baseball. This is the year Santana could have started his first year. But he can’t pick up a ball. Can’t swing a bat. The hopes and dreams of our little sports player we held when he was born is shattered. GONE! NEVER.
Wednesday is his IFSP meeting. I dread it. I fear it. I am SICK about it. We all know the phrase BUDGET CUTS. Well, Arizona got them really bad. We were so LUCKY and blessed to get 2 hours of Physical therapy, 2 hours of Occupational Therapy, and 2 hours of Speech therapy. OH… and 1 hour of music… which is far and few between. I am kicking myself in the head for not asking his rehab doc for a script to continue these therapies. I am crossing my fingers and praying so hard that they get approved again. I hear that they are only giving an hour. So I am scared. He needs these. Also, if they want to cut my nursing hours… that too will happen on Wednesday. So I am just sick. Everyone is pulling me in a million directions and I just need time to regain my mind. NO ONE gets that. I have had a load on my shoulders And I just can’t carry it anymore. And now. As I started writing this… I hit my breaking point. I want to go to bed and lay there and cry. That is what I want and what I need right now.
Besides this… today was wheelchair clinic. They are ordering my huge growing boy a new chair! It will be Black with metal flake. Santana’s Uncle will be proud of him (he has a custom paint shop). Other than that… we are working on the wheel chair van. Trying to make a HUGE decision if I want his back opened up and pounded on like a carpenter would or chance his lungs being compromised until he takes his last breath. Oh… speaking of. He is getting his bronchoscopy at the end of the month to see if he has any blockages causing his breathing issues. This is a big deal. Pray that he stays healthy so they could put him under for it.
Oh… and speaking of turning 5. We were going to have a huge birthday party and fundraiser but the venue fell through. It was a go but waiting for the final word and now I think it is too late to get any word out. I was really hoping to celebrate 5 in a BIG way! But things didn’t work out. soooo… it goes with the rest of the day.
In the end… all that matters is I need you to pray for the IFSP and therapies on Weds. A wheel chair van. Surgery decision and his health for Bronch. Thanks prayer warriors… Could not do this alone!






