During the years since boo was born 9 weeks early there have been several milestones in our lives that we strove to achieve. During the early days all of the goals were medically related. boo developing enough strength to suck , boo learning to feed from a bottle, boo having her testing for a million different things. boo being able to gain weight boo continuing to develop her organs and lungs.boo going home from the hospital. after that it was boo getting off oxygen and boo learning to sit up , boo leaning to crawl and boo learning to walk . then boo learning to walk with a walker and boo transitioning to forearm crutches , boo getting a wheel chair and boo getting out of a wheel chair. boo having surgery and boo having tests , boo having therapy and boo being sick . boo having melt downs , boo being able to over come sensory issues. boo being able to control her ocd, boo being able to improve her visual cognitive skill and boo being able adjust to her glasses and booo........ well you get the picture
There was always something we had to push through . Struggle to get done. fight to get funded . work on after school and appointments. We always had a lot on our plates but health care providers were encouraging, we can over come this. We can help her , we will find out whats wrong . we will get funding . we will get the therapy that will help her . we can help with life skills and most of all they always said don't worry its going to get better. Many promised that boo stopped growing many of the problems related to cerebral palsy would settle down , there would be no new symptoms , cerebral palsy isn't a progressive disease.There were new processes and new technology new research and new surgeries to help with symptoms of cerebral palsy. new therapy techniques and the medical field was advancing every year.
After every mile stone or goal was met we always expected that things would get better. Sadly they did not. Boo had so many issues to be dealt with that no sooner would one thing get manageable and under control another would pop up, There were not only the vast unending string of medical issues , but mental health issues. sensory issues, ocd issues , learning disability's, school issues and tests and meetings and special ed and ieps and the list goes on and on .
many of the goals and milestones we met,Boo learned to walk and talk and kick and scream and whack people with her crutches . WE had to teach her not hit people in rages even if they provoked her. we had to teach her to remember to take off the crutch before scratching her nose so some bystander didn't get whacked. We had to teach her to turn her wheel chair. We had to teach her to read other peoples emotions and to understand what they meant and how to interpret body language. All of the simple things kids learn by being around others and watching their peers and adults interact , boo had to be taught. She could learn and is still learning things , but it isn't easy and she cant seem to just pick up on things. Things I took for granted with my other children that just happened naturally.Every stage of her life came with hurdles that seemed insurmountable and crisis that she just couldn't understand. And we taught her and taught her and moved on and dealt with the next event or thing or medical problem or mental health issue or melt down or ... well you can see where that is going.
After 18 years I am tired. We all worked very hard for boo. Don't misunderstand boo worked really hard too. She made incredible progress and astounded her providers and therapists. She has done amazing things like a earn a gpa of 4.0 while in 8th grade and graduate with honors. She jumped once too!! I will write a post on that.There are so many amazing and wonderful accomplishments in her life. but each accomplishment brought new challenges and problems. New stresses and new areas to work on . new things to learn to deal with for boo and new things to learn how to do.
Daddy became the good guy . He would drive into town in time to take us out to dinner or go some where fun on days off. I became the bad guy. I forced her to go the doctor and appointments she needed. I made her go to school and take baths. I made learn to do things on her own , hard things. things that took years to learn some timed.I made her go to therapy's and have surgeries the doctors said she needed.I made her have tests and blood work . I made her have procedures to check her organs and refused to let her eat cookies for dinner. I did all the mean things moms do for their kids plus some .Then after all that I made her go to mental health services to help her cope.
We reached that wonderful mile stone of 18th birthday. I don't know why I thought life was going to get easier but I did , heaven help me I did. Shes not growing any more so the cerebral palsy wont get worse. her bladder is finished growing so we don't need to keep doing tests on it and her meds are set and working to help her to remain continent . we don't have to see the urologist any more. The feet wont grow and we don't need to get new braces unless some thing drastically changes/ unless there is some problem we have to see the orthopedics people. There are no more surgeries to be done except maybe fusing a couple of toes so we don't have to see the orthopedic surgeon.We are down several specialists so things should be getting better right?
A t the beginning of senior year boo began becoming increasingly irritable and stressed. As the year went on she became depressed angry and her mood swings became erratic. unpredictable and stopped sleeping well . Boo has always slept well due to her meds .She takes them at night specifically because they help her sleep. For some reason this isn't the case. we started 8 months ago by visiting the doctor after we visited her psychiatrist to make sure there was nothing med wise interfering with her sleep.we had a sleep study done in feb. got an appointment for follow up and treatment in march and have to till june for another sleep study to determine the strength and settings of the cpap/bi-pap(( still to be determined which}}. Boo cant deal with life and all the changes going on around her . boo cant sleep at night and is depressed and some times sleeps for days , she is never rested and feeling well , everything upsets her and irritates her and she is always angry and cant enjoy anything .She isnt able to function .We finally have an appointment for counselling so maybe that will help.
We met the last big goal , graduate from high school. It should have been a great time and things should have gotten easier . I know I know silly me what was I thinking !!!! But I did think it for some reason.I feel like the weed out in our yard. just when I think things are improving and a little sunshine or water comes my way , bam along comes this guy with a huge week whacker and knocks me back down. I struggle for a while and try to recover then bam !! There is that guy with the weed whacker again !!!! I am like that weed I guess I am too stubborn to quit no matter how sickly I get , no matter how many times that guy with the giant weed whacker knocks me over. I feel like I look like that weed too , tired wilting bent and mangled. I guess if can survive against all odds i can too.
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