"Official Diagnosis"

When Carter was a little over 2 years old I took him to see a Neurologist. I will never forget this day as long as I live. I remember the doctor telling me that if Carter wouldn't eat "just don't feed him, he will eventually eat". I mean what doctor especially a neurologist tells you that?? Anyway that is beside the point, he came in the room and told me that Carter had mild cerebral palsy. He physically drew some pictures out for me trying to further explain what CP was, but as soon as he said cerebral palsy I mentally checked out. I was crying and he told me that Carter was not that "bad" and I should walk around with him for a day and I could see some really "bad" kids. At this point I was like, where did this doctor get his degree from??? Then as he exited the room and he pointed to a family that he was seeing next. (they didn't see us), but he said "see that boy? he is much worse than Carter and will never do anything".

I definitely needed time to digest this information and was determined not to tell anyone. I felt if I kept it a secret then Carter wouldn't have CP. I look back at my younger self and boy was I naive. I guess that was my brain's way of protecting my heart. So I told Lee about the diagnosis, but said "I don't think he has it- that doctor is a quack". I also told Lee not to tell anyone about this, not his parents or anyone.

Then I can remember telling Carter's OT that the doctor said he had CP and she said "Oh I could've told you that". I was like WHAT! You mean you think he has CP too? Let's just say that she wasn't my OT very much longer.....oh the naive Toni lol

I can remember telling some members of my family several months later about our doctors appointment but I would always preface the conversation with "Carter's doctor said he has CP, but I don't think he does". My family would always say, NO he doesn't have that - he's just a little bit behind Logan, he'll be fine. I know they meant well, but this kept me stuck in denial. I am not sure when I came out of denial, but finally as we would see more and more different doctors I would always see his diagnosis on his chart as cerebral palsy- I guess I came around.

What was I so scared of? It's just a label. I guess I was scared that people would make certain assumptions about Carter and not get to know him and just think he was a "waste" like that neurologist told me about the other child he pointed to in his office. I didn't want Carter treated any differently than other children and especially not his twin brother. But he is different, he is special, he is my Carterbug. Different does not mean less! I love my child named Carter and he has cerebral palsy!

Yum Yum

I can remember the first time I ever got to feed Logan a bottle. He was so precious and tiny. He was 2 months old before he could take feedings from a bottle because he had to learn how to suck, swallow, and breathe simultaneously. It doesn’t sound very difficult, but for a preemie that weighs a little over 2lbs it’s a huge accomplishment. I look back at how far we’ve come and it amazes me at times. Carter never did learn to feed from a bottle. He got a g-tube in his stomach that we fed him with for his first 2 ½ years. When the boys were 2 we went to an awesome place in Dallas called Our Children’s House at Baylor. It was an inpatient program where the boys would stay in the hospital for 2 months. Lee and I both stayed at the hospital at night, but they made us leave during the day to “train” both boys to eat properly. It was a truly amazing experience that changed our lives forever. Carter did not even know how to drink liquids when we arrived, but 6 months after our stay at Baylor he got his g-tube out and has been eating and drinking ever since. He has a huge appetite and I never thought Carter would love to eat as much as he does. Now he will just about eat anything! It is so amazing to see God’s work! This was one of the major reasons I decided to become a Speech Pathologist.

Fairy Godmother

We have a fairy godmother. Her name is Bonnie and she is the most amazing woman you will every meet. She has given me more than I could imagine. Most of all she has given the gift of sanity. Without her I know I would not be finishing my Bachelor’s Degree and pursuing my Master’s Degree in the fall. We met Bonnie about 3 or 4 years ago when the boys where in Pre-K. She was the aide in their classroom. Since that time she has become a part of the family. She is always here when I need her. If I need sometime to myself to study or just time to myself all I have to do is ask. She is always willing to go above and beyond for my boys. She is like their 2^nd mom. I shutter at the thought of life without her. The boys absolutely adore her and feel completely safe with her. That gives Lee and me so much comfort and solace. Knowing that I can just pick up the phone and call her if I ever needed anything is HUGE when you have children with special needs. God brought her into our lives for a reason and I am embracing it and NEVER letting her go! She is now an official member of the family and if I could adopt her I would, lol. She has a special gift with children in general, but especially with children with special needs. She loves them as if they were her own and I could not ask for anything more.

One night had a stomach bug and Lee was out of town working. I was making my way back to the bed from being sick and I passed out and hit the bed. I thought I broke my foot. As I lay there on the floor, I thought I could call Bonnie and she would come take care of the boys and me. She was the first person I thought of and I know that she would’ve immediately gotten in her car and drove over. I made my way to the bed and decided not to call her, but I knew if and whenever I need her she would be there. Thank you so much Bonnie I cannot articulate to you enough how much you mean to us! We LOVE u!!!!

Be Jealous of Me

Over the years I always would think WHY ME! I would go to my nieces and nephews birthday parties and truly be jealous of their children and how they had such a “normal” and typical life. It took me a really long time to realize “they should totally be jealous of me”. I am the one who is blessed. We have our struggles with potty training, eating, walking, communicating, and most of all behaviors, but really I am the one everyone should be jealous of, right? How come nobody sees this? Why do people look at me and think, “oh I don’t know how she does it”, “those poor babies”. You know what? My boys are happy, loving and my pride and joy. I beg you…do not feel sorry for me! (Or anyone for that fact) Try to understand where people have come from and situations they have been faced with and just try and understand. Don’t judge or assume.

Easter

Today is Easter! I can still remember our first Easter with the boy’s home. On this Easter I can reflect on how far we have come over the past 7 years and how much I have grown spiritually. I expressed to the boys’ ex-pre-k teacher Susan how I wanted to attend church somewhere but it seemed like there wasn’t a place for us. She mentioned North Monroe Baptist Church and a wonder woman named Sheryl and how she was organizing a program for special needs children. I have struggled trying to find a church that would accept my non-traditional family and also a place where I could worship and not feel in any way judged, but a place where my family was welcomed with open arms. I found that with NMBC - not only did I find a wonderful church with wonderful pastors and a church family, but also I found this overwhelming love for my children. People (especially Susan & Sheryl) have sacrificed their time so that my family may worship and not have to worry about who is looking after my children. The Lord brought me to NMBC and welcomed us with open arms and open hearts. It is hard for me to articulate to you how much this has changed my relationship with the Lord and seeing his mercy and grace overwhelms me at times. I always felt sort of discriminated against because I had children with special needs and why couldn't we go to church like everyone else did, but now I SEE! It is perfectly clear to me!

No Worries

WOW! What an awesome response to my first couple of blog entries. I had no idea this blogging thing could be so therapeutic, so here goes again.

One of the main struggles I have dealt with concerning my boys was the not knowing what the future will hold. No doctor or therapist ever had the answer for me, but nobody knows the answer to his or her future. So what was all this worrying for? My biggest fear….if something happens to Lee and I who will care for my children with special needs? It’s a huge task for someone to care for 2 special needs children. What happens when we are 80? Will we be too fragile to care for them? You know what….at the end of the day it doesn’t matter. The Lord will take care of them and I can’t continue to worry about what tomorrow holds. I can’t wait for the day we all meet our Lord and Savior Jesus. My boys will be perfectly healthy. They will walk, talk, and tell me everything they always wanted to but couldn’t. This is the day I am waiting for. I would never want to change who they are now, because if I changed them they would not be Carter or Logan anymore. They have taught me more than any professor ever could. They taught me compassion, trusting in the Lord, patience, forgiveness, what it’s like to love someone unconditionally. My heart is so full and I truly feel utterly blessed that the Lord entrusted me with my precious special children. He honored me by giving me these children….He loved me enough to bless me with my wonderfully abnormal life! Thank you Jesus for all your blessings!

Perfectly Imperfect

Look to the future and learn from the past!

As I finished my first blog post I thought going thru all the details of the past 7 years maybe a little to painful and tedious. I will try and touch on some of the major struggles my boys have gone thru, but I don’t think starting from the beginning is the way for me to go with this blog. It’s about living in the moment of today. So after 7 years of ups and downs I finally feel that we are in a wonderful place. I found a wonderful place of love and most of all ACCEPTANCE. This one word has become my motto over the last year. Acceptance, isn’t it a beautiful word? I would love to get that tattooed somewhere on my body, maybe my forehead??? Yes, Logan is Autistic…..and? He absolutely rocks! He is absolutely the coolest kid ever with one exception; my Carter Bug. He was blessed with the gift of Cerebral Palsy. My friend Mollie showed me a video of a woman who survived an abortion and she called her Cerebral Palsy her gift from God. When I watched this video something clicked in me, YES Carter also has this gift. Carter is an amazing child who we have had the most medical problems with. He only had a 30% chance of living and I can remember some family members telling me I should just go ahead and let him go. I pulled up my big girl panties and have been fighting for him ever since. We find the best doctors in the country, the best therapist, etc. If we are faced with a problem we will fight to the bitter end. My boys came into this world weighing 1lb 13ozs. If they can beat those odds, we got this thing in tha bag!!! Carter is strong as an ox and is stubborn (he gets this from his father, lol). He is my warrior! I am truly blessed and honored to be the mother of my perfectly imperfect twins. “Different but not less”

Oh 2 BABIES!

Oh where to begin? My friend, Mollie encouraged me to start a blog because it may help other mothers/families who may face similar situations as mine. And I say "situations" because WOW do I have a lot of ground to cover.....well here goes nothing.

It all started when a man fell in love with a woman, lol....we created a beautiful life together and decided to have "a" baby. Little to our surprise our first visit to the doctor he said "oh it's 2 babies" - I said "What are you talking about?" He said "twins" you are having twins. Lee and I looked at each other & both our eyes filled with tears. We were utterly terrified. I was just getting used to the idea of having one baby, but now I'm having two??? EEK! I was so scared and so I did what any good woman would. I read tons of books on "parenting twins". This really makes me laugh now because no book in the universe could've prepared me for what was about to happen.

So fast forward 6 months.....I started having pains in my stomach- I was 25 weeks pregnant. Heck I didn't know what was going on; I thought maybe a pregnancy pain of some sort, so I ignored it for a day. Monday I went to the doctor and he said "you are going in the hospital" they got a wheelchair from down the hall and wheeled me over to the hospital stat. I couldn't even get my car or call anyone. I knew this was serious and immediately started crying hysterically. Everyone in the doctor's office waiting room was starring at me, but I didn't care. I was terrified and wanted my babies to be ok. I wanted to rewind my pregnancy and redo everything. I think I will end here and continue more later!