Wednesday, July 31, 2013

Yikes!!! We were nominated for an AWARD....

Today I got the weirdest call.  It was a representative from a Congressman's office. She wanted to let us know that we were nominated for an award specifically designed for Parents that do amazing work in adoption.  I was shocked and humbled at this honor. Because, you know, it is an honor just to be nominated.  She sent me an email and requested a biography of our family that included certain information.  I figured since I have never really shared our family's story, I just assumed that everyone knew, I would share our biography on my blog. 

Here is the letter I wrote:
I am very excited that our family was nominated. We would absolutely be able to attend the events if selected. We love to travel and have always wanted to take the boys to Washington, DC. 
I am going to do my very best to keep my answers brief, but as you know that can be hard for a mom to do when talking about her family.
Josh and I were college sweethearts. After college, we got married, bought a house and always thought that children and likely adoption would be part of the equation. Shortly before our first anniversary, we learned that I was pregnant with our son, Bit. Nine weeks into our pregnancy, I started having complications. I was hospitalized and in and out of a drug induced coma the entire pregnancy. Finally, after a lot of hard work by a team of high risk doctors, Bit was born at 33 weeks gestation. He was put in NICU and had a few preemie medical problems, but over all was a happy healthy child. 
When Bit was a year old, we felt in our hearts that our family wasn't complete. We were advised by medical professionals not to attempt another pregnancy, so we knew that were were going to have to grow our family in an alternative way. Together, we researched adoption and we decided to pursue a foster/adoption. After speaking with a representative from foster agencies, we learned that we would likely be taking an at risk foster placement. This meant that which ever child we chose to take, we would agree to parent until permanency occurred. Permanency could mean that he went back to his biological parents or that he was adopted by our family. We had to be prepared, as a family, for things to go either way.

Once all of the training was completed and the home visits were done, we waited. Finally, one day, we got the call. A 6 week old baby had been released from the hospital and needed a placement that night. The placement agency said he was a "healthy, white, baby boy." He had adoption as one of the goals on his permanency plan and, of course, we said, "yes!" That night we met Biscuit.

He came to our home with only the clothes he was wearing, a donated car seat and nothing else. We didn't care. He needed us and our family was there for him until permanency happened- whatever that meant. We were his and he was ours, for as long as he needed it.
The next few days were filled with many doctors' appointments and lots of shopping. We learned that Biscuit was born in a home that didn't meet codes, in less than ideal circumstances. At birth, he tested positive for Opiates, Cocaine, Marijuana and Benzodiazipines. He was angel flighted to Vanderbilt. We also learned that he had been on ECMO. ECMO is the most aggressive form of life support that is used.

Biscuit's entire life has been filled with over 100 nights in Vanderbilt Children's Hospital. He has had countless surgeries and procedures. At times, it seemed that he received a new diagnosis every week. At one time, he had a hospital bracelet for every month of his life from a hospital admission. He has died in my arms 3 times. He has had at least 3-4 therapy appointments per week since he was brought to our home. Either his father or I have attended every appointment with him. He has never spent a night in a hospital alone. When Biscuit was 11 months old he had a G-tube placed. During that time, I used FMLA so I was able to stay with him during his extended hospital stay. My husband and I have learned to everything necessary to care for his medical needs and provided him everything necessary to thrive. Often, that meant paying for items and medications that insurance would not pay for out of pocket. Our life had turned upside down. 
During the entire two year process, we were asked several times if we wanted to continue the placement. With a foster adoption -preadoptive placement, the foster family also has the opportunity disrupt the placement if they feel that the child is not a good match for their family. The DCS workers and his guardian at litem were compelled to ask because Biscuit's care was so involved. Each time, we declined the offer to disrupt the placement. It is our belief that a family does not get to pick the child that God gives them. If a family grows through birth or adoption, you just aren't meant to pick. We were given the baby that we were meant to have and we would see things through until permanency.

Which we did. Biscuit's adoption was finalized on November 2, 2011. Only a few weeks before he turned 2 years old.

Fast forward to today. Biscuit is 3 years old and Bit is 7.  Biscuit continues to be very medically involved. He has a private nurse at our home 60 hours per week; while I work as a Social Worker for Jimmy John's sub shack and his Father works as an Insurance Adjuster for Elmo. We continue to take him to therapy and all of his doctor's appointments and he continues to grow and surpass all of the expectations that doctors have provided. A child that has half of a working vocal cord can talk. He has a diagnosis of hemiparesis and can walk and run. We will never let him be just a diagnosis.

Biscuit can make a person smile on their worst day. He has taught us about perspective and what family really means. His placement has not only blessed our family beyond measure, but other families as well. In June of 2012, my husband was blessed to be able to donate a kidney to one of Biscuit's friends from Vanderbilt. Today, she is 4 and thriving.

So, that is a little about our little family. I hope this provides you with the information that you need. If you have any questions, please feel free to contact me. I look forward to hearing back from you and I am excited at the prospect of participating in this event.


Saturday, July 27, 2013

Cutting out the Cancer

Mark Glamack said, “If you surround yourself with the good and righteous, they can only raise you up. If you surround yourself with the others, they will drag you down into the doldrums of mediocrity, and they will keep you there, but only as long as you permit it."  

Holy cow was that dude right!!!  

Ladies and Gentlemen- it has been a long, rough couple of weeks.  Since Monday, Biscuit has had more medical procedures than I can count (in one day), had a seizure- like the kind that results in a non-responsive blue child and been diagnosed with MRSA in his airway and lungs.  To say that my ulcer is growing by leaps and bounds is a bit of an understatement. 

I have spent a week more or less- on the couch, staring off into space, feeling like I have an elephant on my chest.  You all have felt it- that tight chested anxiety feeling; when your lips tingle- like they are asleep. Only this wasn't caused by my puny baby. It wasn't caused by the fact that Bit is starting 2nd grade- GASP! It is caused by MY choices.  I feel like some of the people that I choose to surround myself with are, simply put, like poison.  Like a cancerous growth that has attached itself to my everyday life. Something that is slowly sucking away my self confidence.  Making me question my ability to do what is right for my children. Causing me to NOT be all that I can be where they are concerned. Which makes me think.  What can I do to change this predicament that I have put myself in?   I have decided that I will be cutting out the cancer.  

Here is the thing. If you have a friend or relative that is raising an "easy to love but hard to raise baby," cut them some darn slack.  Trust me, they get judged just fine by everyone in the world.  From the lady at the grocery store that wants to tell her how their mother's, brother's, cousin's, nephew did just that and they simply had to point their finger at them and say, "no!" and that baby walked the line. To the countless therapists, hospital social workers, doctors and specialists that can't figure out how to "fix it" so it is obviously a problem with their "home life."  WE DON'T NEED YOU TO JUDGE US TOO!!!!!!!!!  

In fact, when you do it- it is quite difficult for us to swallow. You see, families like us have only a few places that we can go where we don't live on edge.  Half of the time, we can't even spend time at our own house where we don't live on edge.  Because of the countless home visits done by those "experts" that can't figure out our kid, either.  We are either preparing for a visit or recovering from one.  Our own house isn't even a "safe place."  So, if you have taken the time and energy to express (verbally) that you are one of those friends/family members that is willing to take the good and the bad, better and worse, of our child and LOVE them AND their parents unconditionally don't take the when the going gets tough (or in this case- steroids; lots and lots of steroids) the tough gets judgmental approach.  News flash- we are aware that out kid has issues.  It isn't like we are sitting around twiddling our thumbs hoping that we can miracle him out of this one.   

Needless to say: I have decided that I don't need people like that in my life. You aren't worth it.  It is true that raising a child with special needs causes to people to isolate themselves from the world around them. Their circle of tried and true friends is certainly just that.  TRUE FRIENDS and UNCONDITIONAL FAMILY MEMBERS.  But, with "friends" and "family" like a few that I have encountered in the last year; WHO THE HECK NEEDS ENEMIES????? I for one- don't!  

So, here is your one warning: If you can't love our family, ALL OF US, unconditionally, step aside and leave us alone. You are nothing but Cancer to our awesomeness. There are a lot of things about my life I can't control, but I can and I will control this.  I won't allow my children, specifically that very active, cute, little one, to believe that he is BAD because YOU needed to blow out someone's candle just to make yours burn brighter.  Perhaps attacking the behavior of a 3 year old is causing you to feel better about your own short comings? I don't know and it isn't my problem.

I won't allow what I now realize were my own needs to hurt my babies or myself.  This mama bear is on a roll and cutting out the cancer like a hot knife goes through butter.  With that- I will be stepping OFF my soapbox now.  I promise that I will not be another blog post that isn't sunshine and rainbows for at least 6 months.  This one just had to be done. Look at it like a necessary evil :)

See the people in that picture below?? Those are the only ones whose opinion that I care about. Just in case you needed a visual aid. 


Wednesday, July 10, 2013

Top 10 Things My Kids Say...

As a Mom, I am pretty sure that I am screwing up my kids about 80% of the time. Someone (I can't remember who) once told me that if you are concerned that you are screwing your children up, you probably aren't, simply because you care enough to be concerned that you are actually NOT being a perfect parent.  But let's face it. NONE of us are perfect parent's. If you THINK you are a perfect parent,  you are wrong.  Lately, Bit and Biscuit have made some little statements that show me that I am not a complete screw up where they are concerned.  I mean, don't get me wrong, they will still have plenty of stuff to talk to their therapists about one day :)
So, here is a top ten list of recent quotes or actions that lead me to believe that I am not as unfit of a mother as I often feel.
10.  Biscuit says The Pledge of Allegiance- He is 3 years old.
9.  They both call either mine or my husband's name when they are scared.  That means they trust us to protect them.   
8.  Bit is often heard telling Biscuit that he he needs to calm down because he isn't breathing well and it isn't good for his airway.
7.  Biscuit sits in timeout and says, "Faith in God. Trust in God. He died for me. Can I get out now?" 
6.  They will both apologize when they feel that they have wronged someone AND they will accept an apology when they are wronged. (Something many adults that I know can't do.)
5.  Biscuit told a crying child at the YMCA childcare, "It be ok. You Mommy and Daddy will come back for you. They may have to leave, but they will always come back."
4. When asked, "Who's baby are you." They always respond. " I am my Momma's Baby."
3.  If you accidentally pull the car out of the garage and they aren't completely buckled, they make you stop the car until they are properly restrained.  Safety First :)
2.  Biscuit is obsessed (maybe a little too much) with sunblock application. He will tell complete strangers, "I am very concerned, you aren't wearing sunblock and you could be burned by the sun."
1.  Today I forgot that that I had promised to do something for Bit. When he reminded me, I turned the car around and told him that I would make good on my promise. He responded with, "Mommy I don't care that you messed up. I just love you." 
So, Maybe I am not as big of a parental screw up as a thought.