Sunday, December 4, 2011
Tuesday, July 5, 2011
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
Sunday, June 26, 2011
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.
Saturday, May 21, 2011
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
Tuesday, April 19, 2011
Friday, March 25, 2011
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."
"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."
God smiles. "A mirror will suffice."
Wednesday, March 16, 2011
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!
Saturday, February 12, 2011
So much for my weekly updates!!!! I did not anticipate another hectic semester when I set that goal. Lol So although I have managed to blog I have not found time to input my entries =)
Well a lot has happened since my last entry. For Christmas I was blessed with 5 little ones and a staff infection that landed me in the hospital for over a week.
Where do I begin…
A little background information on my new additions. I actually got temporary guardianship of their mother 7 years ago when she was 13 and had just given birth to her youngest. She was one of the kiddos I was mentoring with a Youth Intervention program I volunteered for and when her mother threw her on the streets I was who she called. Her father signed over temporary rights and I had her and her young son for almost 9 months. In those 9 months I got her in school, and headed in the right direction. When I realized her stay with me was going to be longer than I originally anticipated I applied for benefits and once her mother found out that meant she could not longer receive cash assistance for a child she was not even caring for she began to fight to get her back.
After trying everything in my power to keep her I was forced to return her to the same bad environment I tried to rescue her from.
Shortly after her mother shipped her off (at 14) to live with her 15 year old boy friend and they went on to have 4 more children (totaling 5) by the age of 19. Both the mother and father have been in jail and the children have been bounced around from one bad environment to another. More recently the children were living with mom and her mother in a small run down 2 bedroom home with 3 adults and 8 children. The mother has been asking for my help with the kids for the last year but I wasn’t sure how I could do it on my own.
On December 23 I got a phone call that forever changed our lives. From my understanding the grandmother who is a meth user attacked one of the 5 year old twins. She grabbed her by the hair and pulled her off the couch saying “you’re a dog and pets do not belong on the furniture” the mother of the children came to her daughter’s defense and pushed grandma off her daughter and then they got into a physical altercation (all in front of the children).
The police were called and the grandmother threw the kids and their mother out of the house leaving them homeless and traumatized 2 days before Christmas. I did not want them to go to CPS custody or be separated so I have had them ever since.
All of the children have abandonment issues, and some behavior and emotional issue due to what they have seen and experienced in their young years. I am hoping to provide them the love and stability that they need and deserve but that their mother is just not equipped to provide for them at this time. This would be an impossible task alone but perfect strangers have come along side us and supported us on this journey which has made it so much easier for me and for that I am forever grateful (and so are these innocent babies who have endured for too much pain and suffering)
I know God has heard my prayers and concerns and I know he will continue to carry us through.
I must have made the naughty list! So it is Christmas eve and I am on my way to the hospital because I have a cyst in the middle of my face which has me so swollen I can barley open my eyes. In addition I got a call last night from my foster daughter & the police and in an attempt to keep the children out of the system I now have five additional children. Merry Christmas to me. =) Santa and I really need to talk!
Round 2! I'm @ the ER w one of my new additions 4 respitory distress! Hope we get out n time 2 get stockings stuffed and presents out!
Round 3! I'm being admitted 2 the hospital 4 the abscess on my face. They think I might possibly have a staff infection. Please pray 4 us
The doctors just confirmed that this painful, ugly, golf ball sized abscess on my face is a Staph Infection. Looks like my stay in the hospital will be extended. The doctors are concerned that the infection is so close to my brain and sinus cavities and are keeping me on IV antibiotics so that the infection does not get into my blood.
Cultures are in and the type of Staph infection I have is MRSA (the worse type to get of course) I am trying to stay positive here but being stuck in the hospital and not seeing David for 4 days now is getting to me!
For the last few days it has seemed impossible to get one of the twins to sleep! (it takes hours) She is notorious for getting into treats and was caught eating something last night but would not fess up what it was. While searching for sippy cups for dinner I found a box of mints under her pillow (energy mints filled with caffeine ;) that explained it all
Laundry, laundry, and more laundry! How will I ever get my chores done with a 2 yr old attached to my hip and 3 other little ones fighting over everything? OMG I am loosing my mind and I still have to get to school for a 5 hr class! Wish me luck I can tell already it is going to be a looooong day! Oh did I mention David had a seizure yesterday and my car battery went out leaving me stranded ;)
So my 3 year old just broke my second pair of glasses this week! She says she doesn’t know why????? When I reprimanded her for it she told me that she hated me, David, and Uncle Jeff. What am I going to do with her? Any advice on how to manage a destructive 3 year old? We need and intervention!!!
I have spent the last week cleaning boogers, vomit, and diarrhea and between all 6 kids it has been a full time job. I have washed all the bedding at least 3 times due to vomit and poop mishaps and after a long day I picked up the kids from daycare to be notified that they all have Lice. OMG I hate bugs
My goal today is to put one foot in front of the other and keep on moving forward. Life as I know it has changed and transitioning into being a mommy of 6 is a work in progress but, despite the runny noses, coughs, and even the lice I blessed to be at a place in my life that I have the opportunity to give these precious kids a life they could not have otherwise.
Just when I am feeling overwhelmed or that I am not strong enough to do this on my own, God gently reminds me that I am not alone and that he is and always will be my strength. That moment is quickly followed by the kids say something adorable that makes me smile and helps me keep on going! =)
Last week it was lice, this week it is pink eye and the flu, my goal today is to squeeze in 5 doctor appointments and homework. Did I mention I am also sick! Ugggg I feel like my house has been hit with the plague.