Ahhhh....reflection is powerful

It has been a tough few months. I began my first semester of graduate school in Speech-Language Pathology. Stupid me...I did not realize how emotional, exhausting, and ginormously difficult getting a Master's Degree would be. As a mother with not 1, but 2 special needs children that are both nonverbal, it has taken a toll on my emotional strength. At times I thought I would just give up....I mean why should I continue to feel guilty for not being able to see my children? "I should just quit" I would think as everyday passed. My children and family mean more to me than anything in the world. "Why was I wasting all of this time to get my degree to help other children? I could be here right now for my boys, you can't get time back that is lost" RIGHT??? But as the days passed and tears flowed - I often thought to myself, I don't want to be a quitter! My husband would often say, "I miss you being home with the boys and it would be nice to have you home everyday". I realized that I loved working with other children and talking to other parents with similar struggles as myself. Knowing that I am not alone in this crazy world does help. Why is it that we want others to feel our pain, our sorrows, our personal experiences and have them understand where we have been and where we are going? It's simple - we all have our own struggles and people do care, but as humans we always put our needs above others. I can not expect people to understand or have empathy because they do not know. I love educating others especially about my personal experiences with my children. Just because a child has special needs does not mean they are any LESS- different, but not less.

My wonderful professor put an article in my box that reminded me that there are others in this world with very similar situations as myself. The article is called "Little Boy Lost" by Amy Leal. If you have time - please google this article. It is wonderful and there is one specific quote she used from Lord Byron that really hit home with me... "Sorrow is knowledge, those that know the most must mourn the deepest, the tree of knowledge is not the tree of life." What a wonderful meaningful quote from a British poet that probably did not have a clue how much solace this would provide to parents similar to myself. I look back during the early years (when my children were under 2 years old) and I did not understand what it meant to have children with special needs and the insurmountable time I would spend trying to gain knowledge - because the more you know the more your can help them, right? WOW, I was undeniable happy. Is ignorance bliss?? The more I read and educated myself about anything and everything that might apply to my children the more weary I became. The more educated I became the more I seemed to lose parts of myself - I began to mourn....I mourned the loss of my "perfect" children that I dreamed of and I became mentally exhausted trying to plan and figure out anything and everything that I "should" do for my children. I often wanted to be ignorant again. Sure it would've been easier to just be ill-informed, but everyone knows I like to do things MY way, which is most often the HARD way....lol. I wouldn't want it any other way! WOW, just when you think you have overcome one obstacle another one slaps you in the face.....no not "slaps" but gives you a Mike Tyson uppercut." You may knock me down or even out for a little while, but I am resilient and I will always FIGHT for my children, my family, our future, and this requires wisdom. Ha! I am far from wise, but maybe one day! Besides, I must keep my sanity or I will become a slave to others and I am too strong to be held captive! I wrote this blog on a whim - hope I can keep up this positivity!

Doctors

Ya know as I was laying in bed last night I got to thinking about lots of different things doctors have said to me over the years that have stuck with me. Some good, some bad, some humiliating and just disgraceful. With that said here are some quotes from doctors that I will always remember....the good the bad and the ugly!

1) "Most babies born at 25 weeks have about a 60% chance of survival, given Carter's condition....I would give him about 30% survival rate"

2) "If you are called or paged to come to NICU; it is NOT a good thing"

3) "We just need to get past the 24 hour mark, then we need to get to the 48 hour mark, we have to take it day by day minute by minute" "At this point I can not tell you if they will live or not"

4) "Your life is about to be an extreme roller coaster ride, so try and get some rest"

5) "I can finally say that your baby will live, but that is about all I can predict for you"

6) "Your child is smarter than a dog and if you can train a dog you can train him"

7) "If he won't eat then just don't feed him; he will eventually eat"

8) "If you think you have it bad then you should walk around with me for a day and see some really "bad" kids" "you have it better than a lot of moms"

These are just some that popped into my head last night and thought I would share with all of you! I am certainly bless that my children lived. They are my special lil gifts from the Lord above. He gave them to me as my special gift and I will honor his wish and be the best mom and wife I know how to be. My life was forever changed on Sept. 13, 2003. I wouldn't trade my life with anyone, I have the perfectly imperfect life anyone could ask for! Love to all of my family friends and supporters along the way!

Bad Blogger!

I haven't been a very good blogger recently - people keep asking me if I've stopped blogging.....the answer is NO! I love to blog, but we've had a difficult summer. Our family has gone through a lot of emotions over the summer - several deaths in our family and dearest friends. Lee's mother recently passed away. She lives in California and it was very upsetting for him #1 because he had not spoken to her in a while and #2 because he wasn't able to attend her funeral in California.
On another note, I am worried about Logan....his OCD has gotten to an all time high this summer. He is so obsessed with PBS Kids. He used to just be ok with watching a show on PBS so he could see the logo at the bottom of the screen, but now he seems obsessed with Dot and Dash (the characters who promote PBS Kids). Dot and Dash appear for about 10 seconds and he wants them on all the time. I am really unsure what to do at this point. Do I just turn the TV off all together? Medication? I have no idea, but we are all about to be in for a ride when school starts back. I start graduate school in August - which is going to be difficult to say the least and the boys start 2nd grade. I am worried about them going back to school because their routine has been absolutely destroyed this summer and I am just as bad. UGH I have two classes that start at 7:30am. I am going to be a walking Zombie for a while. Sorry this blog has been on the depressing side, this is one reason I haven't blogged. I felt as if I didn't have anything positive to say then I just shouldn't post anything, but that's not life....we all have times like this we go through so why not just share it with the world, lol. Maybe this will help me get out of my funk.
It has been really hard to be alone without my husband for a month at a time. I am ready for school to start back so I can have some adult interaction again. I miss my school friends and having a daily routine.
We did have a great vacation at the beach for a week- I will post some pics. The boys love the beach. Carter loves to ride the waves in the boat and Logan loves standing on the shore letting the water wash across his feet. Ahhh I love those memories. I wish we lived closer to the coast so we could go more than once a year.
I think may have said this before, but when we go to the beach....it is the one place where I don't feel a difference in my kids and others. It is the one place I feel normalcy. They play and love the beach like all the other kids there. It is so nice sometimes to feel normal.
I really think maybe we should relocate to Gulf Shores after I graduate???? Or buy a time share, doesn't that sound absolutely fabulous? Well that just totally brightened my spirits. Until the next time; thank you everyone for supporting my journey! xoxo Toni

So many emotions

This past month has been filled with sadness and joy for me I have struggled with the loss of one of my best friend's children. No one thinks the loss of a child can happen to them. Well they are WRONG. I have had 3 friends now whose children have passed away. One an infant, one 8 years old, and the other 17. I feel their pain, but cannot image the pain they will feel for the rest of their lives. This is my struggle, I want to help them, but don't know how. All I can do is pray. I find myself feeling guilty for my happiness when I graduated and also enjoying my wonderful time at the beach with my family. Graduation was awesome! A wonderful adrenaline rush! I loved every minute of it, but as I crossed the stage I thought of my sweet Savannah and how she was just a few weeks away from her high school graduation. Suddenly I was sad as I returned to my seat #13. I cried as I sat there feeling so many emotions, most of them I could not explain. This is not fair! Why? I know she is in Heaven. There is not a doubt in my mind, but I still am sad. My friends are hurting and i want to take it from them. The more accepting I am of my own life the more I struggle to make sense of other's lives. Why do I do this?

Friends

How special are my friends? Let me count the ways....my heart aches when they hurt. I have 3 very special friends who have lost their children. These tragedies have broken me down to my core (my body aches). It hurts my heart to go thru this with them and try to be of some help. I feel like it is happening to me, but all I can do is be here for anything and everything they need and I know they would do the same for me. Well actually they have been there for me- it may not be a death, but when my boys were born I needed support and they tried to help. I wasn't very receptive to them and I wish I would have let them in more than I did, but they are here for me now and that is all that matters now. This is possibly the hardest struggle for me because death is so final there is really nothing I can do for them, but pray. Oh my goodness do I pray for them to find peace and for the Lord to turn this tragedy into something other than sadness. I am really struggling right now, I do not even want to attend my graduation. I just want to stay with my friend constantly because I know she needs me. I know what I am feeling and can't imagine the pain in here heart and how she is suffering. I ask all my friends to please pray and just pray some more. (then pray again later) and then one more time pray again. Lord, Please take this pain from them! I know my boys have angels with them all the time and Savannah and Shelby are right there with them watching over them. That makes me feel good that 2 sweet special girls are keeping them safe and when it's time for us to go home....we shall all be reunited. Till we meet again!

Mother's Day

As we approach Mother's Day tomorrow, I have started noticing people on facebook updating their statuses stating their children, when they were born, and how much they weighed. It's really hard to wrap your arms around how much 1lb 13ozs weighs, but one time I was in one of those sports stores and I saw this tiny little weight and I thought who would work out with this? (a child?) I picked it up and I thought this wouldn't help anyone it's so light then I looked at the bottom of it and it said 2lbs. This is the point I realized OH MY GOSH. My babies weighed less than this???? It scared me to think actually they were smaller than this tiny thing. Then I got to thinking about bags of rice, those come in 2lb bags as well- I found myself on the hunt for something that weighed around 2lbs. I know it sounds silly, but the more I would do this the more grateful I was for my twins and how much they have gone through- they are God's amazing children that he gave to me; He trusted me; He loved me enough to give me these precious babies because He knows I am capable and will do everything in my power to secure their future to the best of my abilities. Sometimes I falter and wonder can I do this? or why couldn't my boys just have been born on time? But then I think of that Garth Brooks song, "Unanswered Prayers". God knows what he is doing you just need to accept it and embrace it and figure out your purpose in life.

Also, I have been thinking of my mother and how wonderful she is. She is always here when and if I need her. Moving across the street from them was the BEST choice I ever made. Just knowing that her and my dad are over there gives me peace. My mother is so kind-hearted and would do anything for anyone especially her kids and grandkids. I like to think I am her favorite, but I'm sure my sister and brother think the same thing. (but I know it's me, lol) It's kinda funny because my mom always tells me that when she keeps my kids they are the "easiest" of all of her grandkids. Isn't that interesting??? I guess "typical" can get on your nerves with all that talking, lol (don't have to worry about that with mine, haha)

Graduation

As I think about my upcoming graduation, I have started to reflect on the reason I decided to return to college. It was a very tuff decision to decide to be away from the boys and go back to school, but since they had to go to school as well - I figured what the heck. I had no clue that I would find another family and wonderful friends at ULM. Also, each class I attend teaches me more about myself and my family life. Not a day goes by that I am not appreciative of my life. Yes, some days are filled with school papers, projects, presentations, and then coming home to my wonderful children. All I can say is God bless the inventor of the dust buster because I can promise I use it at least 5 times a day. I am not sure why I waited so long to own this wonderful invention, but I will never be without it now. I actually consider taking it with me when I go to my moms or in the car, lol. Anyways, so I am graduating and then returning in August to pursue my Master's Degree in Speech-Language Pathology. I did not choose this profession for money or the flexibility of hours, but I want to help other families that face struggles with communication and swallowing as we did. I know all situations will not be exactly like mine, but hopefully being a parent of special needs twins I can offer something to these families that may help them even if facing similar situations. I am scared to work again since it has been 7 years since I worked and will be 9 years once I start working. (that's a long time not to work and have a boss and yes it has been wonderful) I am so grateful to have such a wonderful husband that sacrifices his time with his family to provide for us. I cannot imagine leaving for a month at a time and being in the middle of the ocean with nothing to do or see, but work. He loves us and has always been wonderful at showing us how much. He sent me this email yesterday: " I just wanted to wish u happy Mother's Day. I love u so much and I am lucky to have u as the mother of our kids. They love u to death and if they could talk they would tell u everyday how much they love u. It takes a special mother to go through the day to day struggles u go thru and just take it with a smile (sometimes a bottle of wine.lol). I wish I was half the parent u are. I love you"

This makes me cry every time I read it, how wonderful is he???? I could not have asked for a better man, husband, and father for my kids. One day he can retire and be home with us everyday. I cannot wait! He is sooooo much help when he is home and if I did not have my parents and Bonnie when he is gone I would definitely be in a mental institution. (not kidding) I miss him so much when he is gone and now he stays away for 4 weeks at a time and in Saudi Arabia of all places. I pray every night that the Lord keeps him safe and brings him home to us just as he was when he left. The boys are so much more well behaved when their daddy is home too and I know they miss him just as much as I do!

"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!