Thursday, March 1, 2012

Thank you all for helping me find my SMILE again!



Today has just been one of those days!!!!  My emotions have been getting the best of me and I have had not strength to SMILE my way through this one today.  As I sat in the corner of the Hospital room, crying and feeling sorry for myself I had a few visitors stop by.  A Staff member from my school came and brought us over a dozen letters from all of my students wishing for David to get better.   Then I had a couple of staff members from David’s school bring him a card and his favorite toy.  Before I had time to even realize it I had found my SMILE again!   

I can't seem to find my smile today... Maybe it is because I haven't been able to see his for a week now!


One week ago today I brought my son to the ER for a runny nose and a cough and today I sit by his bedside waiting for him to blink, move, moan, breath….

I can not begin to describe how more desperate and helpless I feel with every passing day. 

When the Doctor first told me that David would probably not make it through the night I began to weep.  In an effort to console me the Doctor said that even if David did make it through the night we could still loose him from his illness weeks down the road. Even then he said “if he does survive it is going to be a long journey and the hospital stay could extend to weeks or even months”.  I then grabbed both his shoulders and said keep him in the hospital for months, a year if you have to, I don’t care just KEEP HIM ALIVE!

David has been slowly getting better but he is still considered in “Critical Condition”.  I am praying that God give him new lungs, and soon.  He is no longer in need of High Frequency Oscillatory Ventilation but he does still remain on a ventilator.  He has opened his eyes a couple of times now almost as if to “say mommy I am with God right now and I am going to be OK” but the selfish mother in me wants to be with me, restored, and back to his normal bubbly self.  I know God is working a miracle and while David is healing he is using David and his journey to prove too many people how REAL and CAPABLE God really is but, my heart still breaks as David’s mother.  People say to take things one day at a time and at this point we are taking things one breath at a time (literally).  Please keep praying!!!!  We still need a miracle and strength to keep fighting this battle!

Wednesday, February 29, 2012

Well all else fails...PRAISE GOD!



Well all else fails...PRAISE GOD!

Today's emotions: Broken and Desperate...



Desperate for him to wake up, smile, breath on his own! I just want my Daday back and this pain in my heart to go away! Please God I know your listening and if things aren't going to change for the time being,  please bring us comfort and peace :(

Tuesday, February 28, 2012

This journey has come with a world wind of emotions which can change from moment to moment.

 I like to say that in Crisis I become “situational Bipolar”. As a human I can not always control how I feel about things. It seems as if I have experienced a million emotions this past week. I have felt sad, angry, frustrated, desperate, faithful, hopeful, hopeless, thankful, helpless, inspirational, brave, cowardly, and that is just to name a few. Today I have been overcome with pain and anger. Not angry at God because I do trust he is in control just disappointed with life and the pain that comes with it.

In Mommies Arms Again


I was able to hold David for the first time since Thursday ;) The Hospital staff has been Amazing. They were explaining to us that they were going to give him a sponge bath and change his linens. I asked how they were going to do that with David in the bed and the nurses explained to me that their plans was to roll him from one side of the bed to the other. I tried to stay composed but as the tears ran down my cheeks I asked “can I hold him while you change his bedding?” “I just need him in my arms I explained and I haven’t been able to hold my child since Thursday”. The nurse was hesitant, she told me that she had never allowed a parent to hold a child while he/she was ventilated before but she was willing to try it if she could get the other staff willing to help. She probably felt sorry for me or felt my desperation but, she pulled it off. (we bribed them with candy!) Five staff member stopped what they were doing and came in to help me hold my beautiful little boy. I knew and they knew that they were doing it more for mommies heart than anything else but those three minutes provided me a lot of healing.

Monday, February 27, 2012

David is Proof That Miracles Still Exist! God is Real!!!!

02/25/12
David is now on 100% life support. Last night a doctor who has treated him since he was a child was called in to come speak to me. We talked about David's contagious giggles, his amazing spirits, & how much he had grown. Then he gently put his hand and my knee & said "mom his lungs are in bad shape, I know he is a fighter but you must be prepared that there is a high chance he won't make it through this". My heart sank & I began to cry uncontrollably explaing to the doctor why I needed David & why he couldn't leave me! Life without David is unimaginable for me! I need his smile, his pure, spirit, his unconditional love...we all do! If David continues to get worse the doctors have already informed us that there is not much more they can do for him, which is fine because I know my God can handle the rest! Family and friends I need EVERYONE praying for a miracle please repost this have your friends pray, have their friends pray, there is power in numbers & I can't loose my Dayday nor can this world afford to loose this little Angel either!

02/27/12
So over the last few days I have had many conversations with God: I have been on my knees, pleaded, cried out, even bartered begging that God would spare my son’s life. I promised to never again complain about how heavy David had gotten, about changing his diapers, and I even agreed to let him throw all of my favorite shoes in the toilet just for him to survive this. I have spent the last few days being the most lost and broken I can ever remember being. I could not imagine life with out my Angel and although, many people think I have been David’s rock the truth is that he has been mine! After hours upon hours of negative reports, and the doctors telling me that my son probably won’t make it through this, I petitioned all of YOU! I was desperate and although I knew God could hear me alone, I also knew that having all of our FB family in friends, including Arizona, California, Texas, Washington, and basically half the world praying would just make the need for an immediate miracle heard load and clear. Many strangers have reached out to us, people who don’t even pray have stopped to stay a prayer for David and I, and I am happy to announce that despite what doctors said our God had different plans! You all have been part of a MIRICALE! I am excited to share with you that last night David opened his eyes for the first time, he sat up, and he has been moved back down to the smaller ventilator! Words can not express how very much your prayers, love, support, and words of encouragement has meant to my family during this very discouraging time. Please know that your voices and prayers are so very powerful and you have made a very important difference to a very special little boy and his heartbroken mommy!



Saturday, February 25, 2012

Our Latest Adventures & Hospital Stays

02/16/12

What started as a trip to the doctor became quite an adventure! Praise God we are home and mommy is very excited to shower, change, brush my teeth, eat real food, and sleep in my own bed tonight =) David is doing great and as for now no surgery =) Thanks for all the prayers and warm wishes!!!


02/20/12

5 years ago today I lost my best friend and the most important man in my life. As the years have past it has gotten easier but today I can remember that phone call like it was yesterday. I hope you’re a peace now daddy, I hope your watching us, and I hope I have made you proud! I would do anything to feel your embrace again or even just to hear you curse me out ;( Just know you are dearly missed today and everyday. David and I love and miss you so very much!!!


02/23/12

What started as a trip to the doctor became quite an adventure! Praise God we are home and mommy is very excited to shower, change, brush my teeth, eat real food, and sleep in my own bed tonight =) David is doing great and as for now no surgery =) Thanks for all the prayers and warm wishes!!!


While checking David's vitals he started seizing! He seized for almost an hour ;( He seized so bad he bit his younger & lip & blew all the blood vessels in his eyes. He has a 105.8 fever which they are desperately trying to get down and he is not moving the left side of his body. Please say a prayer for us mommy is falling to pieces! We are getting a CT now then we are headed to ICU...I will keep everyone posted.


His seizure has subside & David is now resting peacefully :). Now that it is over mommy can go melt down in a corner somewhere!


02/24/25

It is torture watching my son suffer. I wish I could take his place…but I can’t I am stuck watching helplessly by his side. He is heavily sedated, he still can not breathe on his own and when he is moved he becomes very agitated and moans. The only thing that seems to calmed him is me gently rubbing his forehead. The doctors still can not tell me what if any damage the hour long seizure and the 105.8 fever might have had on him so, for now we pray and wait for him to wake up and see how he responds. My brother is taking over David duty while I am off to work. I already missed most of last week and don’t have enough time accumulated to miss again so I am saving my sick days in case things get worse. (Which I hope and pray that they don’t). Wish me luck I am on 2 hours of sleep, an emotional wreck, and I can’t seem to stop crying =( JESUS TAKE THE WHEEL!!!!


Thanks for all the prayers, love, & support! it really does help keep us strong in moments like this! it looks like it might have possibly been pneumonia that triggered the fever, which triggered the seizure, which caused his fever to go even higher. We are still waiting on test results & for David to open his eyes & respond :(

I'm scared, growing weary, & feeling very helpless right now. I just want to see my Daydays smile! The harder this gets the more I miss my dad ;( but then my big brother calls me & comforts me with his faith & words of wisdom! I feel peace right now & I know this storm to will pass...I just pray it passes soon!



02/25/12

Today's Update: doctors cannot explain why David's lung are getting worse but they are. They have had to sedate him because he is fighting the machines. He is in a Bi-pap but they will be ventilating him in the next hour. He is slowly getting food from an NG tube in his nose and they are trying to get a PIC line started. Once he settled they will be doing a Spinal Tap. Still answers no answers; everything is still a mystery at this time so I'm leaving it all in God's hands!


I am so tired and so scared right now and the only strength I can rely on is God's! I just asked the doctor for a prognosis and he told me that all we can do is wait things out. I'm not a patient person! I hate waiting so I ask well can you just tell me he is going to be ok his response was "I can't tell you that people can die from pneumonia but many people do recover, we just don't know". Not the answer I was looking for :(


I'm scared, growing weary, & feeling very helpless right now. I just want to see my Daydays smile! The harder this gets the more I miss my dad ;( but then my big brother calls me & comforts me with his faith & words of wisdom! I feel peace right now & I know this storm to will pass...I just pray it passes soon!


There have been doctors & specialist in & out of our room all day. They have given David Plasma, put him on a feeding tube, all kinds of meds, and a ventilator & yet he is not getting better? I have been trying to figure out what's going on but I feel like the doctors are just as confused as I am & keep going in circles. They just started paging the docs & respiratory to our room STAT so I asked the nurse what was going on. Again I got a fluffy answer, so I looked at him in his eye's and said "look I have been doing this for 15 years, this little boy is my world & I need the truth about his current condition" after hesitating for a moment as if he were looking for gentle words to say what he was about to say he then told me... your son is in Critical Condition... he is getting worse every hour and we are just trying to figure out what else to do for him. My heart is sooo broken right now! the pain & fear is unbearable! Please God don't take him from me, I NEED HIM...THIS WORLD NEEDS HIM!




Sunday, December 4, 2011

Graduation #4

People keep asking me how many times I am going to graduate and unless I decide to get my PhD (which won’t be for a long while) I am done. In 10 days I will get my second Master’s and finally begin my career. No homework, test, rigorous schedules, no more sacrifices for David and I, just a regular job were I check in at 7am and out at 3:30, working with children and hopefully impacting their lives. As excited as I am, these times always come with dreadful emotions. I miss and think of my father everyday but on moments like this I am reminded that he can only look down on me from above. I can not hear his voice, see his expressions, or enjoy his embrace and if I could have only one wish granted for my graduation that is what it would be. One more day with him!

Tuesday, July 5, 2011

The good, the bad, & the ugly!

Last week I completed the last classes for my second Master’s degree. Now I am preparing myself for what’s to come. I have avoided blog updates only because I have been extremely busy and by the time I make myself slow down it is because I am having a melt down. I don’t want all of my blog entries to seem negative and since I have been in a very dark place emotionally I have avoided entries all together. The truth is this is life, ups, downs, the good, the bad, and the ugly.

David has grown so much in the last few years and for that I am very grateful but his growth has forced me to face some scary realities, like how I will care for him and what happens if we loose our services and resources.

The Division of Developmental Disabilities (DDD) is currently trying to reduce his services hours (in half). I am trying to be proactive in this matter but I am getting conflicting information which is making it difficult. I am not trying to be challenging but the truth is I am being forced to face some issues concerning David’s care that are very scary for me. He is already too heavy for me to lift alone, and having taken care of a “baby” for 14 years has been extremely challenging. I can not predict his need for brain surgeries, his seizures, or his respiratory issues. Doctors do not know how much bigger he will grow physically and don’t expect him to develop much more cognitively. I am doing everything in my power to provide David with the life he deserves but we desperately need the services that DDD is trying to take away from us.

I am David’s arms, his legs, his eyes, his voice, and his translator. It is my job as his mother to advocate for him but this is no easy task when I am working with a system much stronger and greater than myself. A system that is supposed to be on our team. I am tired, weary, and don’t feel like I have any fight left in me, but at this point not fighting is not an option. If David looses his services it is very possible caring for him on my own will become too difficult.

I am a strong, independent, educated woman, but I am still human and fear is sinking in!

Friday, July 1, 2011

Life's Battles

You have to pick and choose your battles. There are some challenges in life that even if you come out victorious, will never be worth what the fight itself cost you, so you learn to walk away and consider the lessons learned so that you can save your energy for the battles you can’t afford not to fight. Battles that no matter the outcome you remain a winner because of the strength you demonstrate throughout combat =)

Sunday, June 26, 2011

I have been blessed with one with something more!

Some Mothers Get Babies With Something More
Lori Borgman | Monday, May 12, 2002

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.

Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.

Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close.

Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you.

Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body.

Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day.

How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists hammering in your ear.

I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy pieces like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you.

From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.

You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law.

You're a woman who wanted ten fingers and ten toes, and got something more. You're a wonder.

In the mist of a mission filled with challenges, a journey with a destination still unknown, and a battle that often times feels like it is us against the world, I have lost myself. I know to some I am viewed as heroic, strong, and admirable woman but the truth is often times that strong woman is scared, angry, sad, and confused. I will probably never understand “why us” but then I am reminded that perfect does not necessarily require ten fingers and ten toes and can be a simple as a little boy who has smiled his way through each and everyone of his 31 brain surgeries.

Saturday, May 21, 2011

Questions, Questions, and more Questions...

I am having a very hard time dealing with the fact that my son is no longer my baby, not even my big boy, he has now turned into my little man.


He stayed so small for so long and since he is developmentally around age three I never saw the need to see him as anything other than my one and only baby. To be honest him growing scares me to death. I am being forced to face fears I have never thought of before.


I held him on my lap the other night and realized he was hanging off of me. He weighs over half of what I do and he is almost my height! Lol What happens when he is a man?


At what age or stage of development is it inappropriate for him to still sleep with me or is it already inappropriate and if so what do I do? His seizures are at night and don’t stop without medicine so if he is not sleeping by my side how will I know if he has a seizure since they are silent?


It seems like the bigger he gets the more complicated life and raising him becomes. Anyone who knows me knows I do not do well with change so all of the transition and preparation for High School has got me an emotional wreck.


Now that I am in Special Education and learning about teaching youth about appropriate social skills I realize that because of David’s growth the cute things he has always done might not be so cute to others. For example he is such a loving little boy and kisses everyone. I never saw a problem with that because I always have and still do see him sharing affection as a reflection of the love he has learned at home but, after hearing a colleagues perspective I was able to understand how a 14 year old boy kissing strangers in a store who don’t know him, or anything about his disabilities might not be appropriate. When he was itty bitty those same gestures made men and women melt.

Do all mommys go through this?
Is it that I am now forced to think about how his disabilities will play into his future?
Have I just avoided and escaped these emotions all these years?
I wish I could understand!

I guess since he will always rely on me to care for him as if he is a baby I kind of wish he could stay little forever. Is that wrong?

Friday, April 22, 2011

Happy Easter

Well in about an hour I will be off to the Phi Kappa Phi honor society Initiation Ceremony. I do not find it at all ironic that this event lands on Good Friday. It is a gentle reminder of where I have come from and how I have had the strength to get to where I am today. I thank god for his faithfulness and his sacrifice so that I could become who I am!!!! Thank you Jesus!

Tuesday, April 19, 2011

Being a mommy hurts sometimes!

Never fails I always leave David’s Ortho appt discouraged with a knot in my throat and an ache in my heart! Being remind once a year that your child will probably never walk and that there is not much you, the therapist, and doctors can do help or change things is hard to swallow! Well I need to pull myself together get over this melt down and get to class to give a presentation.

Friday, March 25, 2011

In everything there is a purpose & a plan!

I have pneumonia and I am not feeling too hot. Matter fact, I am quite miserable...
but I know God never gives us more than we can handle. I was reading through some of my inspirational articles I keep around for times like this and I found this piece by Erma Bombeck. It reminded me that in everything there is a purpose and a plan and for that I am thankful =) Just thought I would share it.

God Chooses A Mom for A Disabled Child
by Erma Bombeck
________________________________________
Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."

Wednesday, March 16, 2011

Don’t let focusing on what you don’t have rob you of the joy of what you do!

On days that I am sick, tired, or overwhelmed I often question God on why he has not sent me a “Perfect Man”. Then I look at my precious son and realize he has! Just in a different way than I expected =)

David you make me the proudest mommy in the world =)

Tuesday, March 1, 2011


In the last 2 months we have visited the Urgent Care over 6 times. They already know my tribe by name! lol First lice, then pink eye, strep throat, respitory infection, and now virus #2! The girls have fevers as high as 103. I have to get these kids on some kind of supplement to get them healthy and keep them from catching everything. Any ideas??????

It seems like they catch something it goes around the entire house and by the time all 6 kids and myself get over it we catch something else. I am sooo sick and tired of being sick and tired!


After surviving last semester working, two grad programs, and David and my medical issues I was looking forward to a calm semester. Looks like although my days are no longer 17 hrs long they are still very long and there are not enough hours in the day to complete all the tasks on my plate.

On the bright side I am almost done with half my semester and then only 5 more classes to go until I begin student teaching.

I know what doesn’t kill you only makes you stronger but God I think I am as strong as I am going to get!