Because I Really Have To...

I couldn't let Angela's plaintive post stand alone.

I've really had to hold myself off the blog this month...I kinda got on a roll last month, but because of how I set this month's project up, I corralled myself off for the month...I have a list for the first of December...and I may have to start writing them and saving them so I don't forget...but I really had to piggy back on this one.

I have said that I nipped the grieving process off pretty quickly, but that I revisited it at different times over and over...I have said that parenting is tricky and that "good" parents and "bad" parents are not so cut and dried...and after putting in Cara's post, and asking her some follow up questions, I have started really asking myself if the experiences that we have had in the past with people with special needs colored our own reactions when we were given our Extra Stuff? In mulling it over the last couple of weeks, I really think so...and additionally, what else did we go through at various junctures that could have short-circuited the "dealing" process? Also, do we have other children and how do they compare in age and how did they fall in the birth order? Not because of the actual birth order having an impact on them, but how the comparisons fall with their siblings...

SO---

Past experiences-

Cara said that she had faced the possibility of Downs with one of her older children and had some very positive experiences with a child in a Sunday School class they taught at church...

I had volunteered and worked with children and young adults with Downs...but they had been severely and profoundly involved, in a special school that only dealt with kids who were not independent on, really, any level...there had never been a "high functioning" child with Downs in my past.

The only quasi hopeful experience I had with a child with Downs was a little boy...I think he was 10 ish. He had no speech and his mother hired me to give him private "swim lessons". All she wanted me to do was to take his panic of the water down a couple of ticks down from terror. I was in the BEST shape of my life, I was running, swimming, biking, and doing weights...and I hurt SO BADLY after teaching him swimming lessons...holding him in the water securely, to give him a certain measure of awareness that he was safe, and yet trying to help him feel a measure of independence, and he was panicking and flailing...I have never taken so much medicine JUST for sore muscles...For the record, after 1o weeks, he would willingly get into the water and stand. AND I HAVE NEVER BEEN PROUDER!! :)

So when I was told my child had Down Syndrome, the only experiences had been, while positive, certainly not encouraging for personal independence...

Other possible short-circuiting experiences-

In my personal experience, the Down Syndrome takes a back seat to medical crises...When I had to deal with my baby having open heart surgery and then being diagnosed and followed for a pre-cancerous condition all within 5 months...again, the Downs just wasn't as important...then, when she finally presented it was with a cancer that had a less than 30% survival if you were typical...and better than 98% with Downs...that certainly improves the appreciation of the Downs, let me just tell you! :)

And so now that the medical panic is subsiding, the Down Syndrome is taking more of a center stage...

Siblings-

If your child with Downs (or any special needs) is an only child, or the baby of the family, there is no everyday "Reality Check".

I can say this, because Elise was the "baby" for 4 years and until Amelia came along, the impact of the Downs was not an every day comparison. But when I look at my eight year old, and my 20 month old is more a peer than my 4 year old...the depression comes a lot quicker. And when her younger siblings start asking why she can't talk "right" or why she acts "funny" the fact that things are not as they "should" be gets thrown into your face almost hourly.

Age-

Also, when your baby is a baby, the gap of where they are and where they would've been can only be so wide. When your baby is 1 year, and their behavioral age is 7 months, it's not that huge of a difference. But when you are potty training your 5 (and then 6) year old and they are functionally 2, the gap abruptly gets huge. And when you realize that your child will not be able to cram into the regular diaper sizes for much longer, the pressure grows.

And so, I would like to extend a public hug to Angela. There are so many factors in parenting. There are even more in parenting kids with special needs. And every child and life combination is different. And I would like to call out any parent with kids with special needs if they say that they dealt with their issues immediately and never had to "Deal" with anything again. Because I sincerely doubt it. In my experience the dealing with the new reality is cyclical. I believe that most parents revisit their acceptance over and over and there are days or moments or stages of depression, melancholy, stress, or just accepting the "stuck-ness".

And so, in the continued spirit of the Thanksgiving project, Angela, YOU ARE NOT ALONE. Honest. And you are probably not even so much of a minority as you think...and if you are...then almost my entire circle of parent peers is the entire minority. Really. :) So, rest assured that you will get un-stuck. And that you will probably get stuck again. And that is really okay and perfectly normal. God will hold your hand, whenever you need it. Friends, too. And that, Ladies and Gentlemen, is the true bonus of having kids that aren't quite normal. Or at least, that's my favorite part!!

Thankful That We Are Not Alone - Guest #11

Please welcome Angela....she may or may not remember me contacting me through a friend when her son Benjamin was born...but she was in my prayers for more years than she probably even knew...I have gotten to know her in actuality over the last few months...and she is a joy. Her blog is so much fun, please do check it out...and I am thrilled to introduce her to you:

"Tiffany asked me a couple of weeks ago to write a post for her blog. It's been awhile since I've blogged, so I figured it was a good motivator. I am rarely short of words, and I enjoy writing.

But this one has been rather difficult.

I have literally cleared my screen four times and started over.

I suppose it appropriate to be sitting here, trying to compose the words, stuck.

That's how I feel in my life right now: stuck.

I just deleted over a page of typing because it was a bunch of whining.

My middle son, Benjamin, has Down Syndrome. He is 2 and 1/2.

And I am still not okay with it. I struggle with it almost everyday.

I obviously love him very, very much. It is a fierce, protective love that is different than the love I feel for my other sons.

But the Down Syndrome thing is harder now than it was in the beginning. I know I am not alone, but I know that I am in the minority. Most parents are a lot more accepting this late in the "game". They have moved on past the shock and grief stages.

It still hits me like a slap in the face sometimes. And I can't escape it. My son has Down Syndrome. Down Syndrome. Down Syndrome.

Like a broken record that plays over and over in my head, it hits me in different ways almost every day.

When I see my four-year-old son playing in the yard by himself, talking up a storm to the air because his younger brothers are too young to play with him. Benjamin would be old enough to play with him if he didn't have Down Syndrome.

When I am spoon feeding two boys at each meal. Benjamin would be using his own spoon if he didn't have Down Syndrome.

When I watch with a knot in my stomach as my husband struggles hard to give Benjamin a breathing treatment as Benjamin cries and screams and flails. If Benjamin didn't have Down Syndrome, at 2.5, you would be able to explain to him what you are doing and he would understand

When I only take two boys to a kid's birthday party and leave one at my parents' house house. If Benjamin didn't have Down Syndrome, he would enjoy parties and theme parks and movies and swimming pools at his age. He wouldn't still be so much of a baby.

When my friends' children and my own nephew who are all younger than Benjamin can talk and communicate with their parents and their siblings. Ouch. Still waiting for our first words, and we only have two or three signs. There's very little communication.

I realize how most of you will take this: That I'm ungrateful and that I need to realize that it could be worse. (It could.) That Benjamin is a precious gift. (He is.) That this was not an accident. (IT wasn't.)

I'm just struggling. Please don't judge me. Please don't tell me (even in your mind) that I need to get over it already. Just accept me for who I am, where I am.

A mom who loves her son very much but who is human and confused and disappointed.

I'm just stuck."

Thankful That We Are Not Alone - Guest #10

This dear friend goes to my church and I've had the pleasure of watching her handle a massive surprise with grace and public joy. I have been blessed watching her...and I hope you will be blessed reading her more intimate joy.

Please welcome Sonya:

"Why I am Thankful for a Fisher-Price Star Stacker

In 2002 our daughter Caroline was born, followed by Lauren in 2004. We thought we were done; "so done" that I had my tubes (well, one tube, but that's a whole other story) tied two month later. As the girls began to outgrow their cribs, toys and all the other baby equipment and accessories we had accumulated, we found new homes for the stuff. We were done.

Two years later, however, I began to experience some familiar symptoms. My state of denial lasted a couple of weeks, but the little plus sign on a positive home pregnancy test was quite a wake up call. The next day we were at the doctor's office viewing a little heartbeat on a screen and calculated the cost of all the "stuff" this little one would need. As we left the office in a bit of a daze, we were encouraged to enter a Fisher-Price drawing. Top Prize: high chair.

A week weeks later, a nurse called with the news that we had won the third prize: a little Fisher-Price Star Stacker. I picked up the toy and remember chuckling over the fact that the baby had one toy now. On the drive back home, as loud and clear as if someone were sitting in the passenger's seat talking to me, came the thought,"See, I am going to take care of this child." It was startling, but it was the most reassuring thought I'd had in weeks! I believe that God, through the Holy Spirit, was reassuring me on that day!

Over the next few weeks and months as news of our "surprise" pregnancy spread, we received loans and gifts of nearly everything we needed: maternity clothes, baby clothes, a crib, toys, etc. See, I am going to take care of this child.

At nineteen weeks, a routine ultrasound of our little boy revealed two clubbed feet and an atypical measurement in his head. We took the doctor's advice and scheduled an amniocentesis just to rule out any genetic or neurological causes.

This is the point in the story where I admit my long-time animosity towards minivans. I can't stand them, and swore that I would never drive one! The problem was that even our largest vehicle wouldn't accommodate three car seats and so our hunt for a new family vehicle. Just a couple of weeks before the amnio, I begrudgingly began to admit that a minivan made the most sense for our family. To preserve my "dignity" though, I declared that the day we picked up the minivan would be one of the worst days of my life.

Have you guessed what happened next? On the way to pick up our new minivan, I answered the call from a geneticist with the news that our new little guy (at this point my husband and I were still debating between two names) had a rare chromosome disorder; a deletion in the top portion of Chromosome 2. Other than crying my way through all the sales and financial documents - I still wonder if what those people at the dealership thought - all I remember from that day are the words of the geneticist:

Five cases in the the medical literature:
Severe to profound mental deficits

Low muscle tone

Heart defects

Hearing loss

Seizure disorder

Shortened life span

Very little was known about other kids with similar deletions, but none of it was good. As the doctors began to run more detailed tests, we asked folks to begin praying. Our families, friends, Bible Study Groups, church family, and even strangers prayed for us. A week later, a report came back that revised the location of the deletion. Their best guess was a slightly improved prognosis. We settled into a cycle of despair and hope, but whenever I saw that little Star Stacker toy I remembered the words, "See, I am going to take care of this child." I knew that God would either heal our son or equip our family to care for him.

A week before his due date, I went into labor. It was an anxious few hours as we waited to see what immediate health concerns Ben would have. Ben arrived with a hardy cry and a good Apgar scores. An echocardiogram, a renal ultrasound, and a detailed hearing test revealed no causes for concern. He was discharged from the hospital two days after his birth. See I am going to take care of this child.

Three weeks after his birth, we were at the orthopedic office to begin serial casting process to correct his feet. As the doctor wrestled into two thigh-to-toe casts, he declared that Ben was "strong". I couldn't have been more pleased.

At the age of six months we became concerned about Ben's hearing. After multiple hearing tests, one of which was performed at the hospital so he could be sedated, we discovered he has a moderate, mixed hearing loss in both ears.

When we went to the audiologist to arrange for hearing aids, we were stunned to find out how expensive they are. Katherine told us state money might be available to assist the purchase, but she knew Fulton and Cobb counties were already out of funds for that year, she wasn't very hopeful. We left with a promise that she would call and let us know.

We arrived home to find an excited message from Katherine. When she called the contact for Forsyth County, she was told money had already been set aside for Ben. The hospital audiologist who performed the sedated test had already called and put him on the list! Our cost for the aids would be a little over $400. We shared this exciting answer to prayer with our Bible Study groups and in just a couple of days received a call that someone had anonymously donated$400 to help us pay for the hearing aids. See I am going to take care of this child.

Ben is now 3 1/2 years old. He has some developmental delays in his speech, gross and fine motor skills, but he is so far ahead of where we thought he would be. I have hope that he can be an independent adult. I keep that Star Stacker in his room as a tangible reminder of how he has taken care of Ben as well as provided for our material needs."

Thankful That We Are Not Alone - Guest #9

This is the author of another one of my very favorite blogs that I follow. I am very excited to introduce Starrlife from Life Decanted. She has a gorgeous girl K, who also has Down Syndrome and I'm not sure if I enjoy the reflections or pictures more. :)

This is a very timely post. I have striven to be conscientious about this very subject, but it is something we really need to be consistently aware of as parents of kids with special needs. I have been personally thinking a lot on this subject the older Elise gets. I want my child to be strong and confident, but not feel any more entitled than my other children.

Thank you, Starrlife, for putting it so beautifully:

"A Good Question

A great artist, bloggy friend and parent of an adult daughter with Down Syndrome, Candee Basford, turned me on to a wonderful article from Psychology Today written my Brene Brown read here.

Reading this article has some at an interesting point in my daughter's development, my sweet kind 11 year old daughter who who recently has been trying on asserting herself, and not very skillfully - in other words, doing a little bullying in the form of pushing a little boy and cutting to the front of lines (moving her body and intimidating others to get to the front). Being the parent of a child with visible differences, I have, like many others, visions of people taking advantage or making fun of my wonderful child. So, to observe and hear about these incidents is so ironic - it sends a chill down my spine. Have I raised a bully, an unkind child? Is that how my daughter is going to manage her own emerging feelings of vulnerabilities as she becomes more aware of her differences? Did she learn that from her peers of from our family environment? Does this mean there are cruelties being done to her that I don't hear/know about? That she can't express?

Brown reflects in her article that at this point in our culture, it seems that there is an increase in the pattern of, "Rather than doing the difficult work of embracing our own vulnerabilities and imperfections, we expose, attack, or ridicule what is vulnerable or imperfect about others.".

I can see that everywhere - from reality shows and the news, comedy and movies. I hear that Myspace and Facebook as well are hot beds of one-upmanship and put downs. Denigrating others to boost our own sense of belonging, enhancing that us vs. Them dynamic appears to be built in our day to day life. How can we stop our children as the struggle to find their comfort zone in the world from doing unto others what we would not want done to them?

I know that, as a so-called typical person growing up, the world was a painful and exclusionary place socially. So I've always thought that my ideas about difference were progressive and that because I was so happy with my daughter just as she is that that would assist her in maintaining her self esteem. But now I see that there is more to it than that. There must be a deeply held belief that not only is it okay to be different, but that it is okay to be apart, it is okay to be afraid and to teach skills on how to be afraid and vulnerable without acting out against it - finding the place that we can be "the one" and being kind instead of aggressive in that place. Standing at the head of the line and humbly offering it to another. Seeing the person pushing an reflecting on how sad it is rather than how strong that is. Brown says it better than I can so I'll quote her again, "Vulnerability may be at the core of fear and uncertainty, but it is also the birthplace of courage and compassion".

Now I know in my heart that my daughter remains sweet and kind but needs to learn skills to manage her social interactions in a positive way. Her school has a wonderful program called Positive Behavior Intervention Supports to build anti-bullying skills. The teacher decided to address my daughter's behavior just as you would anyone else's, with an invitation to speak to an authority figure assigned to educate around conflict resolution skills and he id an excellent job since she reported back some of what he taught her. But as Brown says at the end of her article;"The answer to the bullying problem starts with this question; Do we have the courage to be the adults that our children need us to be? ".

And that is a good question."

Thankful That We Are Not Alone - Guest #8

This sweet mama approached me with a request to participate in my Thanksgiving Project. I cannot even begin to tell you how pleased I am that she did. She has a wonderful blog On A Life Less Perfect. I encourage you to check it out!

Please welcome Lisa:

"Mrs. Bissaillon is the gym teacher at the Perley Elementary School. She is a stern woman who rarely smiles.

Her preschool and kindergarten gym classes are unusually well behaved. The word on the playground is out; the kids have been warned. This woman has no tolerance for misconduct. It is as if the milk cartons in the cafeteria contain dire warnings and photographs of kids who misbehave in her class. She reminds me of a hardened Marine Drill Instructor as she barks out commands to her lasses of tiny terrified tots.

"Joshua, if you can not be quiet and listen to my instruction, you can go sit over on the bleachers until you can." she barks. The once rambunctious child is jolted into submission as he hangs his head and slowly shuffles over to the bleachers to serve his sentence and pray that his photo does not appear on the milk cartons.

Before Nicholas started kindergarten, my 8-year-old son, Weston was unrelenting in his horror stories of Mrs. Bissaillon. Being a rambunctious child himself, and having served plenty of his own time on the bleachers, Weston made it very clear to Nicholas, this was not a teacher to underestimate.

Even parents dropping their children off at school in the morning seem to avoid any unnecessary eye contact with Mrs. Bissaillon. The mere sight of her seems to conjure up their own nightmarish memories of tyrant teachers and days spent in detention halls.

I must admit, I too, am afraid of her.

So, you can imagine my surprise when one day Mrs. Bissaillon boldly marches up to speak directly to me. Thoughts run amok inside my head as I desperately try to prepare myself for what she is about to say.

She can't be complaining about Weston this time, he's at the middle school now, I think quietly to myself. It can't be me; I don't even go to school anymore! Did I look at her funny? Does she notice the cold sweat on my forehead when I walk past the gym? Thoughts speed through my brain like ping pong balls. Then, as if a bucket of cold water is thrown over my head, I realize, oh no, it's Nicholas!

More thoughts, faster this time, oh no, he had one of his tantrums, probably the full-blown kind where he throws himself to the ground, kicking his feet and screaming. That's it, and now she's starting to speak. I close my eyes to prepare myself for what's coming. I am ready to hear how she is dedicating an entire bleacher section to me to help remind others of what happens to those with poor parenting skills.

"Mrs. Peters!"
"Yes?" I ask tentatively, cringing just a little bit.
"I need to tell you what a delightful little boy your son Nicholas is!" And for the first time in Perley Elementary School history, she smiles.
"What?" I ask.
"That's right", she says,"Can I tell you just how hard this little boy works! Our first activity in class is running two laps around the gym. Your son led the class for the entire two laps!"
I am completely speechless. Her words have paralyzed me. I struggle to visualize my son actually winning a running race. She is still smiling as she continues her description of the day's events.
"He ran two laps, played our bean bag game, and still had enough energy to help all the other children pick up their bags. He listened closely to all of my instructions. But there is something else." she says.
This is the part about the tantrums, I think.
"Your son looks at me with such love in his heart."
I am stunned. I look at Mrs. Bissaillon and quickly realize, that like Nicholas, this woman is often misunderstood. Underneath her hardened exterior, beats the heart of a deep and loving woman. She sees my son for who he is, a unique and contributing individual, not a horrific diagnosis. She is one of the truly special few.

Why was Nicholas so cooperative in class I wondered to myself? Was Weston able to strike fear into his heart? Or was it something else? Did he see something the rest of us could not? Since his birth, Nicholas has developed many beautiful gifts. But the gift that touches me the most, is his innate ability to seek out the individuals who seem to need the most love. He finds the souls in this world who are the most misunderstood, the most tormented or just the most saddened. He finds the Mrs. Bissaillons of the world and speaks to them. Sometimes just with a smile, but more often it is with a warm and enthusiastic "Hello!" The response to his enthusiasm, no matter how tormented, misunderstood or saddened folks feel, is always the same, a smile.

To me, it is as if my son has been sent from above with a very special mission, simply to love the world. There are days when the reality of Prader Willi Syndrome gets me feeling down. It is on those down days that I like to watch my son closely, as he gives his special gift so medicinally to the silent suffers of this world.

And with his unselfish acts of kindness, my silent suffering also comes to an end, at least for a moment.

"Did you hear me?" Mrs. Bissaillon asks, snapping me out of my thoughts and back into reality.
"Yes," I say smilingly, as suddenly she looks very different to me."

Thankful That We Are Not Alone - Guest #7

My guest blogger today was someone that I found on http://www.downsyndrome.com/, just under a year ago, who had put together a video "if her daughter could say what she was thinking", that I watched and sent to all my friends because it put me in stitches every time...and I found her again recently and have enjoyed reading her blog, http://www.tri21.downsyndrome.com/. Please welcome Laura's reflections on this time of year...

"Well, it's the month of November. With Thanksgiving coming up, I guess it makes all of us stop and think of what we are thankful for in our lives. One of the things I am grateful for is this whole wide world of people I never would have never even known had it not been for my daughter who has Down Syndrome. My world has grown from tiny to huge thanks all to her. It's a weird phenomenon but I am sure most people with somebody in their lives with Down Syndrome can relate to this.

I have always enjoyed my time to myself. I am one of those people who can go to a movie or a fancy restaurant all by myself and not think twice about it. I enjoy my solitude. I still do. (Of course being married with two children, makes these times of solitude few and far between!) Still, I think I am much more "out there" and sociable thanks to my daughter.

When she was born it was so devastating to hear she had Down Syndrome. I called my local county to notify them that I had a special needs child, as I was directed to by...I can't even remember who instructed me to do this! Anyway, soon my home was flooded with social workers, therapists, teachers all trying to help my daughter. It was the BEST thing ever. Not only were they helping her, they were helping me. So often these wonderful people were not just working with my daughter, but also allowing me to verbalize all that I was thinking and feeling at the time. When early intervention ended, I was introduced to a whole new world of people in the school setting.

Then there were the times I was out and about doing errands with my daughter. My daughter is so loving (and cute!) She just draws people to her. It is like she brings out the goodness in people. Now being a mother and an advocate for her and all, I was driven to be so open with these complete strangers. Here is my chance to show people that people with Down Syndrome have so much to offer. I have to open up and be approachable. How could I not?

Other times, I would be out somewhere and I would spot somebody with Down Syndrome, WoooHooo! You would think I spotted a Hollywood celebrity. After a bit of stalking, I usually approach the parent or caregiver of the person with Down Syndrome. Usually, it's like a big family reunion when I tell them my daughter has Down Syndrome, too. Invariable, we wind up talking and talking

Then, of course, there is the internet. I'd say 85% of my Facebook "friends" are people touched by somebody in their lives with Down Syndrome. What a great resource this is! There is even an awesome site: http://www.downsyndrome.com/ where ALL of us blog about our kids, siblings, grandchildren, etc. with Down Syndrome. Between Facebook and this site, there are all these people from around the WORLD all reaching out to each other. We are all boasting, bragging, crying, venting, laughing about all things Down Syndrome."

Thankful We Are Not Alone - Guest #6

My next blogger is the mother of one of Elise's very best friends, Megan. She has graciously submitted this piece as a favor to me. Thank you so much, Laura, for sharing!

"I am the proud mother of Megan. She is the prettiest, sweetest, funniest, BRAVEST, & STRONGEST little girl I know. She is now 7 and has been through more in her little life than most adults go through in their entire lifetime! This special little girl has made me a member of the "Mito Mom Club". We, mothers of these precious children, all refer to ourselves as "Mito Moms". It helps us know that we are not alone in our battle of the unknown.

You see, Megan has mitochondrial disease or "Mito" for short. You say, "mito what"? That is exactly what we said when we received her diagnosis back in 2004. Not only had we never heard of it, but we soon found out that it is not only a very serious, progressive, life debilitating disease; also that there are no "proven" therapies. All we could do was treat the symptoms. We give Megan a cocktail of vitamins, medications, and cofactors and pray for the best. There is also no clinic or center to speak of for these disorders and there really is not a whole lot going in research for a cure. Not to mention the lack of awareness. It is hard enough to find out that you have a special needs child, a sick child, but then to learn that you are virtually all alone in the medical world...

It is very hard to believe that they are not trying harder to find answers to the disease when it is linked to so many other diseases. Mito has now been linked to Autism, Parkinson's, Huntington's, and Alzheimer's. You see Mito is also a neurodegenerative disease so we do not know how slow or how fast her progression will be or what this horrible disease will do to her body. Also more research has been showing that it will not be so rare after all...1 in 4000 births will develop a mitochondrial disease by the age of 10. Yes, it can begin later in childhood, even as an adult!

Mitochondrial disease is the result of failures of the mitochondria, the power house of the cell. Mitochondria as responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. These diseases appear to cause the most damage to the cells of the brain, heart, liver, skeletal muscles, kidney, and the endocrine and respiratory systems. This disease also affects each child differently so there is so much unknown about Megan's future. There is no way to predict how or when the progression will take place. We honestly have no idea what is ahead of us.

Megan currently struggles with seizures, central apnea, cognitive delays, GERD, asthma, muscle weakness, speech disorder, movement disorder, atypical autism, balance issues, and a weakened immune system. She cannot eat or drink anything by mouth. She relies on a g-tube for all of her nutrition. She will occasionally eat some yogurt or pudding, maybe an M&M on a good day. The central apnea is the scariest of her issues. Her brain no longer controls her breathing like it should. She will just stop breathing throughout the day and night. During the day you will hear her hyperventilate and that is why...she is catching her breath. She must wear O2 and an apnea monitor at night to ensure her safety. Poor Megan must sleep every night with tubes all around her. Her life...It simply is not fair! I would take her disease from her in a second if I could, but I can't. It pains me to know I can't do anything, but be her advocate, her caregiver, her mommy, and pray, pray, pray!!!

With all her struggles, test, surgeries, illnesses, and fatigue, she is amazing! She is the BRAVEST and STRONGEST person I have ever known. She goes through horrible pain and struggles daily, but you'd never know it. She always has a smile on her face. She is the happiest little girl and loves everyone with all of her heart! She teaches the world around her what REALLY matters in life. Thank you, God, for trusting us with the precious gift of her life. What a blessing she is to us!!"