today is a day of reflection; our forrest turns 9 today! i love birthdays; birthdays are a BIG DEAL to me...all birthdays! actually, as i'm writing it's about that time 9 years ago that they placed him in my arms! such a cute baby....wow, where has the time gone? right now he's sitting here playing with the lego darth vader tie fighter that he just built....acting out all different scenarios to make me laugh! he's such a fun kid! he's very loving and affectionate! as a special treat i checked him out of school at lunch today and we all went to lunch to celebrate his special day! i always love being surrounded by ALL my guys (i still can't believe i'm the mom to 3 sons!)
i'm fairly certain that forrest is the mirror image of his dad at that age; i can only guess the "grief" that tim put his parents through with his childhood mischief! it's so neat to see how differently God gifts our children, isn't it? forrest is merciful, kind, good; he's independent in some ways, like how he loves to ride his bike all around the neighborhood all by himself! and forrest loves people; he rarely meets a stranger. i'm so thankful that God gave him to us! GOD IS GOOD!
Monday, March 29, 2010
Thursday, March 25, 2010
Just Out of Reach....Make That Taste!
i realize this week just how important food is to me. very. very, very! i love food, it's true. probably a little too much. oh well! there are worse things, aren't there? what brought about this revelation? twice this week i was in position to get a food i really like, but due to circumstances i could not control, was unable to get them. okay, this is not a deep, thought provoking post....sorry! on tuesday night, my dear husband wanted me to attend a fundraiser with him for our local rescue mission, chautaqua school and haiti...an "empty bowl" soup dinner. for a donation, you received unlimited soups provided by local restaurants. a local ritzy, expensive restaurant makes delicious she crab soup..one of my favorites. we hardly ever get to go there...for obvious reasons (my dear husband is the executive director of a not-for-profit organization)! anyway, we were leaving wyatt at home with ethan and forrest for the first time since wyatt's surgery (almost 4 weeks post-op and doing terrific). i knew he had not napped well, but i had fed them all and was hopeful i could be gone an hour! as i arrived, the first phone call came..."wyatt's screaming....i think he's trying to poop..." by the time i was in the cafeteria, call number 2...."he's still screaming, what do i do?" as we get in line to eat, i see it.....she crab soup from THAT restaurant! wow! i can't wait....i can already taste it....and then the third call, with wyatt still screaming in the background...."where's the gas medicine (which fixes everything, by the way!)? time to go back home! our poor baby, who never screams, needed mama! and away we went...."no soup for you..." (the soup chef from Seinfeld, remember?)
the very next day, we went to pensacola for wyatt's post-op appointment with his cardiologist. he received an excellent report and was released to resume normal activities! yay! on our way to eat lunch, i saw a sign for tcby yogurt, which we no longer have in our hometown, and the sign said "$.99 waffle cone wednesday!" wow! awesome! what a deal! so i told tim, after lunch, we can get cheap waffle cones! and he agreed....so after lunch, and a quick trip to target, he dropped me in front of the tcby. as i walked in i passed a little girl leaving with a beautiful white and orange combination waffle cone..yummy! and then i looked up to find no less than 20 people in line for yogurt....NO WAY!!!! i've never seen that many people in any yogurt/ice cream store, ever! once again, no yogurt for me.....i couldn't make my guys wait that long for me to get yogurt...i was sad, sad, sad....
but on a bright note, i did get some macaroni grill bread to take home for supper....
the very next day, we went to pensacola for wyatt's post-op appointment with his cardiologist. he received an excellent report and was released to resume normal activities! yay! on our way to eat lunch, i saw a sign for tcby yogurt, which we no longer have in our hometown, and the sign said "$.99 waffle cone wednesday!" wow! awesome! what a deal! so i told tim, after lunch, we can get cheap waffle cones! and he agreed....so after lunch, and a quick trip to target, he dropped me in front of the tcby. as i walked in i passed a little girl leaving with a beautiful white and orange combination waffle cone..yummy! and then i looked up to find no less than 20 people in line for yogurt....NO WAY!!!! i've never seen that many people in any yogurt/ice cream store, ever! once again, no yogurt for me.....i couldn't make my guys wait that long for me to get yogurt...i was sad, sad, sad....
but on a bright note, i did get some macaroni grill bread to take home for supper....
Sunday, March 21, 2010
How Down Syndrome Has Affected Me....
here it is, our first world down syndrome day. locally we did not have an organized activity, so i've just celebrated with my online community of friends. what a blessing they are! with wyatt's continued "isolation," we couldn't do much, so maybe next year we'll plan a celebration! this past week, as we've all posted tons of publicity about this day, it's also been a time of reflection for me. one mom put together a photo montage of our kids, and asked "what does Down syndrome mean to you, or how has it affected your life? these are my thoughts on that question....
down syndrome has given me a greater compassion for differences in others, whether it be a disability, physical or mental illness, poverty, homelessness...the list goes on and on. mercy has never been my primary "gift," and God is stretching me in that area....oh how He's stretching me! down syndrome has given me a greater capacity to love and understand others. it has also given me a greater appreciation for the little things in life, wyatt's small daily accomplishments, causing celebrations that formerly were not celebrated! down syndrome has given me friendships i never would have had, a bond that only parents of children with special needs can share. it's shown me there's no room in my life for selfishness, self-centeredness. it's given me an intolerance for "foolish," unimportant "stuff..." life's too short to waste. i need to make the most of every day that God has given me...to serve Him and fulfill His plan for my life....
this is just a tiny little bit of how down syndrome has affected me..... ramblings....i was reminded at church today that i don't need to fear ....anything....including wyatt's future as a baby/boy/man with down syndrome. as i've said many times, God has a plan for us, for wyatt; i know He IS and WILL equip us for that plan, i just need to seek and follow Him daily, hourly, minute by minute...NO FEAR...."For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline." 2 Timothy 1:7
so, happy world down syndrome day 2010! thanks for travelling this journey with me..
down syndrome has given me a greater compassion for differences in others, whether it be a disability, physical or mental illness, poverty, homelessness...the list goes on and on. mercy has never been my primary "gift," and God is stretching me in that area....oh how He's stretching me! down syndrome has given me a greater capacity to love and understand others. it has also given me a greater appreciation for the little things in life, wyatt's small daily accomplishments, causing celebrations that formerly were not celebrated! down syndrome has given me friendships i never would have had, a bond that only parents of children with special needs can share. it's shown me there's no room in my life for selfishness, self-centeredness. it's given me an intolerance for "foolish," unimportant "stuff..." life's too short to waste. i need to make the most of every day that God has given me...to serve Him and fulfill His plan for my life....
this is just a tiny little bit of how down syndrome has affected me..... ramblings....i was reminded at church today that i don't need to fear ....anything....including wyatt's future as a baby/boy/man with down syndrome. as i've said many times, God has a plan for us, for wyatt; i know He IS and WILL equip us for that plan, i just need to seek and follow Him daily, hourly, minute by minute...NO FEAR...."For God did not give us a spirit of timidity, but a spirit of power, of love and of self-discipline." 2 Timothy 1:7
so, happy world down syndrome day 2010! thanks for travelling this journey with me..
Thursday, March 18, 2010
Our Bonus Baby Story...
i've been planning to write about this for a while and this week as we approach world down syndrome day on march 21, seemed to be a good time. this morning after i finally read kelle hampton's story, i decided it was the time....
i was what i considered to be old when we found out i was pregnant....42 at the time of conception. we seriously thought that i was going into menopause. i have an older sister who went into menopause before 40, so i thought "this is it!" we were wrong! i had not felt well for weeks, but was too busy to slow down and rest. a trip to a national conference in nashville, our own local women's conference, life...too much to do to slow down! i thought once everything was over i'd have time to rest and refresh. but my period was late...and i finally convinced tim that maybe i should take a pregnancy test. the monday night before thanksgiving 2008 i took a test and it was positive. tim still did not believe it. so, i went to target and got another test, a 2 pack, to take first thing the next morning.... sure enough another positive! still unbelieving, i called my ob/gyn, our good friend debbie edgeworth on her way to work to get her opinion on the accuracy of home pregnancy tests at my age..."if positive, very accurate" was her response..."why?"....2 positives...so she had me come into the office that morning, as soon as we could get there! sure enough, the ultrasound showed our precious baby's beating heart. 6 weeks pregnant...due in july. wow...we were dumbfounded, shocked, disbelieving. we had no reason to even suspect that we would be pregnant...precautions were ALWAYS taken....REALLY! but there we were, old and pregnant. we knew this baby would be special....God's plan, not ours. His special gift to us, beyond our comprehension! wow...a baby....our boys would be 16 and 8 when this baby was born. i told my 2 best friends immediately. we told our boys that night at supper, and then went and told my parents that evening, then tim's parents, siblings, all of our good friends...and that list was LONG! of course everyone was SHOCKED to say the least! how fun that was....
throughout my pregnancy, i must have seen 20-30 children and adults with Down syndrome. i knew the odds were in our favor to have a baby with Down syndrome, but we chose not to have any prenantal testing. it didn't matter...this baby was God's gift to us, our "bonus" baby as one friend called him....love that title! we had lots and lots of ultrasounds, none of which showed anything questionable...nothing...he looked perfectly healthy! yet every time i saw someone with Down syndrome i'd think "maybe..." and tell tim about it. he's reassure me that i was worrying for nothing. everything would be fine. but i kept wondering.... only told one friend about my concerns, she was often with me when i'd see someone with Down syndrome.
wyatt was due on july 16th, but our other boys had been early, so i was expecting him early, hoping for july 4th. try as i might, he didn't arrive with the fireworks on the 4th, but did make his grand appearance 2 days later! we arrived at the hospital around 9:35pm on monday night, july 6th, and he was born around 10:15 pm. a very quick delivery...we were glad our dr made it in time for his arrival! wow! that was a fast birth. 8 lb 6 oz, 21 1/2 inches long, he fell right between our other boys birth weights/heights! he was so beautiful, looked just like ethan and forrest, except for one thing....his ears seemed small and flattened against his head. that was different from the older boys. hm, i thought....maybe.... but no one said anything. no one acted like anything was wrong. he was beautiful..perfect....and he is!
my mom brought the boys up to meet their little brother, one of my best friends, susan, was there taking tons of pictures; what a celebration we had! he nursed right away and took to it immediately! even better than our older sons initially did! we were up most of the night, were there for his first bath and his hearing screening, which he failed in one ear. hm, that seemed unusual too. but we were reassured that lots of babies fail their screenings initially due to fluids, etc. they'd recheck him the next day. when we were finally alone, i asked tim, "when do you think they'll tell us if he has Down syndrome?" we thought someone would have told us if they suspected anything...but no one did....
the next morning our family pediatrician examined wyatt and then came to see us. "he's a fine healthy boy" he told us.... great, i thought.... but i asked anyway, "do you think he has Down syndrome?".... "no, no, i don't think so" was his response. "he might have some features, but no.." all our boys have tiny slanted eyes, so we knew that was not a concern.....whew! that was that. the question was settled....no Down syndrome! i finally could relax and enjoy our new baby without that nagging question. or so i thought....
the next morning our ob/gyn came in to do wyatt's circumcision, and after what seemed an eternity she came in to talk to us. "what did dr. hunt say about the baby?" she asked. i replied "he said he's FINE...no Down syndrome (she knew my fears...)" "well" she replied, "i have some concerns...i think he may have Down syndrome..." and our whole world changed. she shared her concerns, including the simian crease, his eyes, broad nasal bridge, gap between his toes. still i thought she could be wrong...maybe. i think she had already called our pediatrician by that time, to order blood work to confirm her suspicians. shortly thereafter a nurse came to get wyatt for the pediatrician to examine him...i said "no, he'll need to come in here to examine him...." and so he did, and he said "i understand i may have spoken too soon. perhaps he does have Down syndrome...he looks a little more like it today..." (which i did not agree with...wyatt's features had not changed over night!) as we talked, he said wyatt did not have the typical "floppy" baby appearance, but he had ordered the bloodwork to test for trisomy 21, to be sure one way or the other. he reassured us of how sweet children with Ds are, how he would bring us great joy, he'd be with us forever, we'd rejoice over all his accomplishments, no matter how big or small. not awfully reassuring, i'll tell you, especially that part about "always being with you..." AT THAT TIME it was not what i wanted to hear, to be honest.
i was devastated, scared to death, uncertain, confused....so many emotions. i wept. probably the first time in my life i ever truly wept. i stood in the shower and sobs just wracked my body. i couldn't stop crying. i knew basically nothing about Down syndrome, and i was afraid. terrified actually. i didn't want to tell anyone. i didn't want to see anyone. i wanted to just curl up with tim and wyatt by ourselves. and we did. and i cried some more. what a hard day that was... our good friend and associate pastor carl came in about that time. he'd stuck pretty close to us throughout our pregnancy and birth, so it was only natural that we would share what was going on with him. we knew he would be praying for us, and keep our confidence. i'll never forget that day....it was just HARD.
that was also the day we were released from the hospital, so once they finally were able to draw wyatt's blood for the test, which was extremely difficult to do, we had to go home and pretend that everything was okay with our boys, parents and friends. i again told my 2 best friends immediately and that was hard too. of course they were wonderfully supportive, i was just so very sad. at wyatt's first checkup, only 5 days after he was born, the dr. detected a heart murmur that needed to be checked out. not a heart problem too...hearing, heart, when would it end? wasn't Ds enough???? of course those were both Ds related health issues. additionally we were told we'd know the results of the blood work within a week or so, however it took longer, about 12 days. 12 very long days...my blood pressure had shot up after his birth, which was very scary too, and the additional stress of not telling anyone about wyatt's possible Ds diagnosis only compounded the issue!
i finally received a phone call from the pediatrician himself saying he had the results, did we want to come in to receive them, or get them over the phone? well, at that point i knew the results...he would probably have immediately shared if the test was negative.... tim was still at work, and came home immediately when i called him. my parents were here when i received the phone call, but i had to mask my emotions and not tell them then. after we processed the finality of the diagnosis, we went and told my parents, and then tim's parents, and siblings....etc. much less joyful news we were sharing this time....
or so we thought! wow! what a difference 8 months makes! what joy this baby boy has brought into our lives, so many lives! GOD IS GOOD...ALL THE TIME! and HE knows exactly what HE's doing, ALL THE TIME! and we rejoice over His perfect plan, giving our family this perfect bonus baby boy wyatt, who HE created, just like HE planned! i know HE has great plans for this precious gift...i can't wait to see what more of those plans are...
i was what i considered to be old when we found out i was pregnant....42 at the time of conception. we seriously thought that i was going into menopause. i have an older sister who went into menopause before 40, so i thought "this is it!" we were wrong! i had not felt well for weeks, but was too busy to slow down and rest. a trip to a national conference in nashville, our own local women's conference, life...too much to do to slow down! i thought once everything was over i'd have time to rest and refresh. but my period was late...and i finally convinced tim that maybe i should take a pregnancy test. the monday night before thanksgiving 2008 i took a test and it was positive. tim still did not believe it. so, i went to target and got another test, a 2 pack, to take first thing the next morning.... sure enough another positive! still unbelieving, i called my ob/gyn, our good friend debbie edgeworth on her way to work to get her opinion on the accuracy of home pregnancy tests at my age..."if positive, very accurate" was her response..."why?"....2 positives...so she had me come into the office that morning, as soon as we could get there! sure enough, the ultrasound showed our precious baby's beating heart. 6 weeks pregnant...due in july. wow...we were dumbfounded, shocked, disbelieving. we had no reason to even suspect that we would be pregnant...precautions were ALWAYS taken....REALLY! but there we were, old and pregnant. we knew this baby would be special....God's plan, not ours. His special gift to us, beyond our comprehension! wow...a baby....our boys would be 16 and 8 when this baby was born. i told my 2 best friends immediately. we told our boys that night at supper, and then went and told my parents that evening, then tim's parents, siblings, all of our good friends...and that list was LONG! of course everyone was SHOCKED to say the least! how fun that was....
throughout my pregnancy, i must have seen 20-30 children and adults with Down syndrome. i knew the odds were in our favor to have a baby with Down syndrome, but we chose not to have any prenantal testing. it didn't matter...this baby was God's gift to us, our "bonus" baby as one friend called him....love that title! we had lots and lots of ultrasounds, none of which showed anything questionable...nothing...he looked perfectly healthy! yet every time i saw someone with Down syndrome i'd think "maybe..." and tell tim about it. he's reassure me that i was worrying for nothing. everything would be fine. but i kept wondering.... only told one friend about my concerns, she was often with me when i'd see someone with Down syndrome.
wyatt was due on july 16th, but our other boys had been early, so i was expecting him early, hoping for july 4th. try as i might, he didn't arrive with the fireworks on the 4th, but did make his grand appearance 2 days later! we arrived at the hospital around 9:35pm on monday night, july 6th, and he was born around 10:15 pm. a very quick delivery...we were glad our dr made it in time for his arrival! wow! that was a fast birth. 8 lb 6 oz, 21 1/2 inches long, he fell right between our other boys birth weights/heights! he was so beautiful, looked just like ethan and forrest, except for one thing....his ears seemed small and flattened against his head. that was different from the older boys. hm, i thought....maybe.... but no one said anything. no one acted like anything was wrong. he was beautiful..perfect....and he is!
my mom brought the boys up to meet their little brother, one of my best friends, susan, was there taking tons of pictures; what a celebration we had! he nursed right away and took to it immediately! even better than our older sons initially did! we were up most of the night, were there for his first bath and his hearing screening, which he failed in one ear. hm, that seemed unusual too. but we were reassured that lots of babies fail their screenings initially due to fluids, etc. they'd recheck him the next day. when we were finally alone, i asked tim, "when do you think they'll tell us if he has Down syndrome?" we thought someone would have told us if they suspected anything...but no one did....
the next morning our family pediatrician examined wyatt and then came to see us. "he's a fine healthy boy" he told us.... great, i thought.... but i asked anyway, "do you think he has Down syndrome?".... "no, no, i don't think so" was his response. "he might have some features, but no.." all our boys have tiny slanted eyes, so we knew that was not a concern.....whew! that was that. the question was settled....no Down syndrome! i finally could relax and enjoy our new baby without that nagging question. or so i thought....
the next morning our ob/gyn came in to do wyatt's circumcision, and after what seemed an eternity she came in to talk to us. "what did dr. hunt say about the baby?" she asked. i replied "he said he's FINE...no Down syndrome (she knew my fears...)" "well" she replied, "i have some concerns...i think he may have Down syndrome..." and our whole world changed. she shared her concerns, including the simian crease, his eyes, broad nasal bridge, gap between his toes. still i thought she could be wrong...maybe. i think she had already called our pediatrician by that time, to order blood work to confirm her suspicians. shortly thereafter a nurse came to get wyatt for the pediatrician to examine him...i said "no, he'll need to come in here to examine him...." and so he did, and he said "i understand i may have spoken too soon. perhaps he does have Down syndrome...he looks a little more like it today..." (which i did not agree with...wyatt's features had not changed over night!) as we talked, he said wyatt did not have the typical "floppy" baby appearance, but he had ordered the bloodwork to test for trisomy 21, to be sure one way or the other. he reassured us of how sweet children with Ds are, how he would bring us great joy, he'd be with us forever, we'd rejoice over all his accomplishments, no matter how big or small. not awfully reassuring, i'll tell you, especially that part about "always being with you..." AT THAT TIME it was not what i wanted to hear, to be honest.
i was devastated, scared to death, uncertain, confused....so many emotions. i wept. probably the first time in my life i ever truly wept. i stood in the shower and sobs just wracked my body. i couldn't stop crying. i knew basically nothing about Down syndrome, and i was afraid. terrified actually. i didn't want to tell anyone. i didn't want to see anyone. i wanted to just curl up with tim and wyatt by ourselves. and we did. and i cried some more. what a hard day that was... our good friend and associate pastor carl came in about that time. he'd stuck pretty close to us throughout our pregnancy and birth, so it was only natural that we would share what was going on with him. we knew he would be praying for us, and keep our confidence. i'll never forget that day....it was just HARD.
that was also the day we were released from the hospital, so once they finally were able to draw wyatt's blood for the test, which was extremely difficult to do, we had to go home and pretend that everything was okay with our boys, parents and friends. i again told my 2 best friends immediately and that was hard too. of course they were wonderfully supportive, i was just so very sad. at wyatt's first checkup, only 5 days after he was born, the dr. detected a heart murmur that needed to be checked out. not a heart problem too...hearing, heart, when would it end? wasn't Ds enough???? of course those were both Ds related health issues. additionally we were told we'd know the results of the blood work within a week or so, however it took longer, about 12 days. 12 very long days...my blood pressure had shot up after his birth, which was very scary too, and the additional stress of not telling anyone about wyatt's possible Ds diagnosis only compounded the issue!
i finally received a phone call from the pediatrician himself saying he had the results, did we want to come in to receive them, or get them over the phone? well, at that point i knew the results...he would probably have immediately shared if the test was negative.... tim was still at work, and came home immediately when i called him. my parents were here when i received the phone call, but i had to mask my emotions and not tell them then. after we processed the finality of the diagnosis, we went and told my parents, and then tim's parents, and siblings....etc. much less joyful news we were sharing this time....
or so we thought! wow! what a difference 8 months makes! what joy this baby boy has brought into our lives, so many lives! GOD IS GOOD...ALL THE TIME! and HE knows exactly what HE's doing, ALL THE TIME! and we rejoice over His perfect plan, giving our family this perfect bonus baby boy wyatt, who HE created, just like HE planned! i know HE has great plans for this precious gift...i can't wait to see what more of those plans are...
Wednesday, March 17, 2010
Ponderings from Surgery...
wow! i can't believe it's been almost 3 weeks since wyatt's surgery. while in the hospital, i found that i just "went through the motions" of everything there was to do. it was almost a numbness still; different from the pre-surgery, "i can't believe this is happening to my baby" numbness....the "what do i do next?" numbness. the stress of the actual surgery combined with the stress of fighting to breastfeed made for LOTS OF STRESS! it may seem silly that i fought so hard for nursing, but it was THAT IMPORTANT to us. it's what i CAN DO for him; one advantage i CAN give him (i believe) with his growth and development, not to mention how terific it is for him physically to nurse as a baby with Down syndrome(great for his mouth, facial muscles, etc.) in cicu we stayed with wyatt as much as possible, between my pumping to keep my milk supply up, and eating. once he was in step-down, it was pretty much left up to us to care for his every need! which was way different than it is at home! it was so scary to hold him initially, but once we got to nurse again, it was great...i knew everything was going to be okay! i'm still a little tired. but getting better. wyatt is doing terrific! it is amazing how quickly he has bounced back....so much so that i have to remind myself that he just had MAJOR surgery a few weeks ago! his cardiologist told us, "it's like he's been run over by a mack truck," which really put it into perspective! i know this is a lot of rambling...wish i'd taken the time before now to post! more soon...
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