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| ~Jocelyn Abigail Weese~ |
has it really been 7 years since jocelyn was born??? it has all went by so fast! i can still remember the moment she came into this world...i had to have a c-section w/ her so i couldn't see her right when she was born, but i sure could hear her...her cry was so loud! i don't remember even being worried about her, all i was asking the nurses & doctor was "PLEASE tell me there's no penis!" (i already had a boy & i wanted a girl SO SO BAD...) anyways, i could not have been happier that day...i finally had my precious little girl i had waited for for what seemed like forever. everything was PERFECT in my life!!
well, time went by & jocelyn seemed to be just fine...but then we got to 6 or 7 months old & i just felt like something wasn't right. she wouldn't even try to sit up, even w/ help she seemed to have no balance or coordination. she wouldn't ever let her feet touch the ground & try to push up or stand like most babies do. even in her exersaucer/walker she would NEVER want her feet to touch the ground. her weight started to decrease fairly rapidly too. i especially knew when she turned 1 that something was definitely wrong w/ her, but her doctor would not listen to me. i can still see her at her 1st birthday party...in a baby walker, not just because she couldn't walk, but she still couldn't even sit up by herself. no crawling either...& she was 1. well, i finally got in to see a developmental pediatrician in tulsa...PRAISE THE LORD!!! because of this wonderful man, jocelyn has made the best progress imaginable.
we have had quite the journey over the past several years. we have went thru many tests, appointments, therapies...lots of tears & days i completely felt like giving up. but w/ the help of my family, friends, church, therapists, doctors & specialists i have been strong enough to hold it together for this precious little ANGEL. speaking of Angel...it took us over 3 years to finally get the diagnosis i was waiting on...what in the world is wrong w/ my daughter??? well, we were lucky enough to get to have a visit w/ a great pediatric geneticist that did a thorough study of jocelyn's history...he was able to let us know for certain within 6 weeks of testing that she for sure had ANGELMAN SYNDROME. http://www.angelman.org/ honestly, i had never even heard of this mess before...but i sure know a ton about it now. i've been living it on a daily basis for the past 7 years. with each year comes new challenges & obstacles, but jocelyn has handled it well.
jocelyn was diagnosed w/ failure to thrive from age 1 to a little over 2. she ended up having a metabolic disorder that just wouldn't allow her food to give her any nutrition. it took several months to get that straightened out. i thought she would be 15 pounds forever. once we got her nutrition under control & w/ the help of her therapists, she finally began to sit up & then crawl. i was so proud of her!! then at age 3 she began having seizures. it effected her everyday life, she couldn't sit up or crawl during this time. it was so hard to watch her going thru that battle, she had made so much progress during that 3rd year of life & now it was like watching her just go backwards. she even had to work on her sensitivity issues again which had already taken months of work just to desensitize her to her everyday environment. what's that you ask...yes, there's a whole world out there called sensory processing disorder. jocelyn even has to deal w/ this stuff everyday too. http://www.sensory-processing-disorder.com/ well, we have finally gotten her meds right & i'm happy to say that we have now been seizure free for the past 2 years!!! but we've still had to get used to many things that come w/ angelman syndrome. wheelchairs, for example...thank goodness for joce's wheelchair. as much as i hate that we have to have one, it's been such a blessing for getting her around. i don't think anyone out there ever sees a wheelchair in their child's future, but for jocelyn it's a must have.
she still does not walk w/ out assistance, she has NO SPEECH at all. she goes to physical therapy, occupational therapy, & speech therapy every week & has been for the past 5 years. i still can't believe that she's 7 today & i have yet to hear one word from her mouth. we have our own special conversations everyday, but i yearn to hear her sweet little voice say "momma" someday. you just never imagine that you will have a child that has anything wrong, that their development will be at such a SLOW rate. the pain that her disorder brings to my heart cannot be explained, only those that have similar situations in their life can understand. i know i have many friends & family that have compassion for jocelyn & i, but they still have no way of knowing the inner grief i feel & how hard daily life is for jocelyn. but she is a brave & determined little girl...she works so hard to make progress. her SMILE is infectious...for real!!! i wish that i had her happiness all the time. i LOVE that mentally she has no fears, no problems, no worries, no pain, no heartache...the way that we do. her SIMPLICITY is the greatest gift that God could have ever given to her. God showed me this last fall when we lost a dear family member due to suicide...how painful that was for all of us to endure. but as i stood at the cemetary during mitch's service i literally felt God tap me on the shoulder & say to me..."i know you hate angelman syndrome, you hate that wheelchair, but i need you to understand that jocelyn's SIMPLICITY was the greatest gift i could ever give to her...the pain that mitch felt was so harsh, but jocelyn will never have to feel that" WOW...i do believe that's the closest i've ever felt to God & it touched my heart more than i can ever explain to anyone. it was like i could feel mitch there telling me that jocelyn's peace was far greater than her legs or voice working. i now have a special place in my heart for mitch & thru jocelyn's SIMPLICITY i'm reminded that God works in mysterious ways. i cannot wait to see mitch in heaven, so that i can hug him & tell him thank you for giving me comfort that i never thought i would find even though he could not find his own comfort here on this earth. he did his service, he will be rewarded for that, i was a beneficiary of his purpose here on this earth & i will never forget what he taught me. SIMPLICITY is the best...jocelyn has simplicity & in a way, i'm jealous!!
jocelyn definitely has a purpose here, she's here doing her part in God's big plan. i myself am honored that God chose me to care for her. He picked me over all others to be her mom, to watch over her during her time on earth. i know that we are all beneficiaries of the message that jocelyn has brought here to earth. the Lord is ultimately speaking to us thru her & i thank Him so much for using her to bring me & others closer to Him. i know someday i will be able to WALK & TALK with jocelyn in the kingdom of heaven & she will be made new, made PERFECT!! how wonderful that day will be :)
ok, this blog has gotten quite lengthy, i think i should wrap it up...so, i really just want to say HAPPY HAPPY BIRTHDAY to my sweet sweet angel...i LOVE you so much!!! it's been quite the journey for the past 7 years & i've enjoyed every minute of it...even the hard ones. thank you joce for sharing your journey with me...i'll be there with you until the end...i love you!!!
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| Jocelyn...the picture of SIMPLICITY... |
