(Insert Creative Title…too tired to figure it out) |

(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!

Uncategorized | Santana's Mommy | February 8, 2010 7:14 pm

8 Comments

By Renee Ashing, February 8, 2010 @ 10:17 pm

Lindsey I am always praying for your family. We believe in miracles….

Love Ashing family..
By Barbara, February 9, 2010 @ 7:33 am

I am always pryaing for Santana and your family. You guys are the best.
By Suzi Searles, February 10, 2010 @ 3:27 am

Praying for you today.

Love in Christ,
Suzi
By sharon, February 10, 2010 @ 3:39 pm

Hi Ive never signed before-but I wanted to offer my prayers and support. I came by way of Izak Poore’s momma. We were talking and she told me about your beutiful little boy. I must say what a charmer he is. The other reason I wanted to stop in is to ask you if you would allow us to ‘adopt’Santana into our foundation that we have set up in honor of our 10y/o angel Curtis. Curtis had NDD-neuro-degentive dystrophy and on Dec. 24,2009 he lost his battle with the NDD but won a glorious place in the arms of Jesus. Anyway the foundation was started to give a little encourgement and offer prayer support for other families-a way for us to pay it back. kIf you allow us the honor of takeing on Santana we will send him a blanket,a few small toys etc. All I need from you is your home address,his birthday,and a list of specifc prayer request so that I can post them on our web site. Anyway if its all right you can e-mail me at shubertsharon@sbcglobal.net keeping you in our prayers F.R.O.G. sharon and crew
By Suzi Searles, February 10, 2010 @ 8:46 pm

Just wanted to let you know that I love your music. My Soul Waits For You, is a powerful song!

How are you today? Is Santana doing any better?
Still praying.

Love in Christ,
Suzi
By Jami Poore, February 11, 2010 @ 10:31 am

Dear Lord~ I come to you on my knees, Lord, and pray that your MIGHTY Hands touch beautiful Santana. Please God, let Your child heal, so that he can show the world the gretness of your Powers, Grace, your Love. Santana is a testament of Your Light and Blesseings to everyone who gets to meet him. In Jesus Name,
Amen
Linz~ Izak and I just said a prayer for you while we were typing that. I am so sorry you are having a tought time lately. All I can tell you is to hold on to HOPE, never give up NEVER GIVE UP. There are people out there that you could find who would be willing to help Santana. I searched and searched until I found one that I knew would be compassionate, caring, and most of all HOPEFUL. Izak’s peds. Dr. is AWESOME, he loves Izak, and most importantly he is constant communication with all the other teams that work with Izak. I know that there is someone out there who will fit your needs. I really really pray that God leads them to you. Despite all the stuggles you have had lately, isn’t it AMAZING when you snuggle your precious son, catch the glimpse of a smile, the contentment, the LOVE. That’s all you have to do with Santana is just LOVE him. Linz~ you know I have walked the path you are on, I always think and remember about the things Izak used to do,and he was rotten, he ALWAYS hated getting dressed and throw a fit, he still does lol. There is so so much I see in my son. OH, his personality is still there. LOL!! It is going to take him time to get there. God gives us that time, this is His plan, ans you have to really really trust Him with every ounce of your soul. The setbacks are the devil trying to get to you. Keep your eyes focused on HIM. Give your heart to Him, we are ALL HIS children. Just look in his beautiful brown eyes, he will get there, I BELIEVE that. You have hit a bump, a big bump, but turn it over to God, so what YOU think is best, and try to listen to your and feel God, He will lead you down the right path. I know it hurts when you think what could of been. But that was not in God’s plan for you, just like it wasn’t for me, and many others. HOWEVER, now we get to see God at work every single day, in our lives, in our children, the small victories, the big victories. So many people take their children for granted, but God has given us His most precious gifts,,,, to love,,,, and we find strength,light, love, and HOPE, through this. There probably aren’t many people that can say they see God at work every single day. I know it hurts, to think about what could of been. BUT, now you have to think, WHAT GOING TO BE. There is so much HOPE in my heart (and soooo many others) for Santana. I know he’s in there, wating to come on out, I just really Believe that. After following your family for 3 years, seeing all the GOOD stuff you have posted before, I know he will amaze us all. Look for God working in everything around you, feel Him, listen, see him. Start a new chapter, most importantly (my amazing husband said 1 time this to me, and it sits right there in my heart) JUST LOVE HIM he’s still Santana. That’s all that matter, the love. Snuggle him, play with him, let him do eveything, go to the store, help you cook, play games with the boys, love him. I promise you will see God at work in the simplest of ways but its amazing Take every single amazing little thing Santana does and rejoice, give thanks to God, and pretty soon you see lots and lots more amazing stuff, and lots more God at work in Santana. We love you guys so much, and have followed you for soooo long, I know one day Santana will amaze all. (he already amazes me . If I can do ANYTHING for you, you know I would in a heartbeat. Call me, I think you have my nubers, I am always here. Give Mr. Santana Banana a BIG BIG hug and kiss from me and “knuckles” from Izak. As I said let me know if you ever want to talk, vent, cry, I will be here for you. We are praying!! TONS and TONS and TONS of love hugs and prayers,, God Bless
By Jami Poore, February 11, 2010 @ 10:41 am

Sorry that was so rambling and spelled AWFUL lol!!! The coffe hasn’t penetrated to my brain yet. We love you guys. ALWAYS praying. Always HOPE xoxo
By Lisa, February 21, 2010 @ 11:01 pm

Hi Lindsey,

We recently bought a wheelchair van from Vehicle Specialists in Phx and its so awesome. If you’d like more info., feel free to email me. Another place to go is VMI and Ability Center, both in PHX.