The day is slipping away and sometimes it is really hard to get used to the time zone thing. Right now it is almost 8pm on the east coast…and we are just gearing up for dinner!
So thankful for the sweet bloggy friend who shared a few old photos of our Jubilee when she was just a little thing…
This morning our little Jubilee had to go to the doctor. This was a follow-up for her eyes. She has many things going on, but they really feel that they can help correct her cross eyes with surgery.
Today they decided surgery is the best option.
She was a jewel at the doctors…
but when we came out she was completely silent.
I tried to talk to her. She just stared.
Then I tried to take her for a little tiny treat. Nothing doing…
She only wanted to go home.
I tried again.
Nope.
“Go home.”
I waited a while and tried a third time.
Again…”Go Home.”
Okay, so, let me get this straight – what you’re sayin’ is that you want to go home? {haha}
After three attempts, my smarts kicked in and I {finally} asked, “Wait! Are you mad at mommy?”
She shook her head “yes”.
I’m sure my eyes got big.
“SOOO what’s the deal? Don’t you love mommy?”
She shook her head “nope” – she didn’t love me.
I tried to explain to her that the doctor is going to help her see much better…and not fall {since she falls daily from her eyes crossing causing a lack of depth perception}.
But my explanation was workin’.
She’s still avoiding me.
Sometimes it’s really hard, even at 10 years old, to explain things to her because of her cognitive capabilities, although I sure have tried to explain it all, in as simple an explanation as possible.
*sigh*
I know parenting is parenting and I’m not to be her buddy…{which I’m not} but no doubt, Dr. Dobson was sure right, “Parenting is definitely not for cowards”.
I don't have a child, but I have been THE child. In the fall of 2007, I was 15 and a junior in high school. I had surgery to correct major scoliosis planned in SC for October 17th (a good 8 hour drive from my house). My mom came home from work on September 10th and told me the surgery was moved to SEPTEMBER 17th. I cried and cried and yelled and screamed…..and I was 15 with no cognitive disabilities. Sigh. I am a strange child.
Okay, so I truly laughed out loud when I read your comment. So sorry you have had to have so many surgeries – BUT thankful that in it all God has worked a tender heart for others and the orphan! Good stuff!
I am now to the point where I can say that every one of those 19 surgeries got me to where I am today. It has given me the heart that I have, and my story has led me to people who have changed my life. An opportunity to tell my story to a stranger led to some of my best friends, a chance to visit them in Nashville, and my baptism there on April 5th. God started redeeming all the pain before I even believed that He was there. I'm grateful for my story, every last bit of it.
Oh yeah! Just this morning Nina was furious and defiant about having to drink all the contrast for her CT. I'm with ya sister!
Hey, I know your Nina – she would never – haha!! Tell that chica we send our love! xoxo
Our 3 year old, who had her surgery for cleft repair this time last year, when she was 2 years old, and had been home for only 7 months at the time of surgery, told us the other day that, Momma had left her at the doctor at the hospital and she did n't want me doing that again. After much questioning and explaining we discovered that she thought I had taken her to the doctors and left her for that surgery. SHE was not quite
loopy when they took her back to the O.R. She was screaming for me and I was upset. We explained that we went to the other door and waited for her. She went on to tell us that she had to lie down and take some medicine. HER language skills have recently exploded. I hate that she thought I was leaving her. I didn't like that she was not looped out of it enough at the time, but glad we've since explained and cleared that up.
Awwww, poor thing {you and her!}…so difficult that they can't understand it all…bless you my friend…
Everyday. Twice everyday. At least. My son does not grow without a twice daily shot of growth factor. He does not like shots. He refuses twice. Daily. Everyday. He also does not like physical therapy. Well, he goes though phases of not liking it. I still make him go. And now I punish him when he refuses to appropriately participate (immediately to bed after dinner, and many shed tears tonight over this). Cognitively he is fine. He is 4, so there is just normal developmental 4 year old level. However, he needs these things. Occasionally now he shows insight into we are doing it for his good. Occasionally. My mantra on days like today "It is not my job for me to like you, it is my job to be a good mother so you can live up to the potential God gave you"
I have the same mantra….and agree wholeheartedly….rock it mama!
Hi Linny! It hurts huh? My 9.5yr old has cognitive disablities global delays(as well as sensory processing disorder). He also has the tiniest mouth ever! He is going through orthodontia work to pull his upper palate forward to help with an underbitet. He wears a headgear at night. It looks like a Silence of the Lambs mask! My heart breaks when we are at the orthodontist every 3 months. Dillon is so sensitive and anxious to fingers in his mouth that he throws up on his shirt while sitting in the treatment chair. Do you know how many Dr. K_____ T-shirts we have?? Really, sometimes I question why I'm putting him through this. Will it help in the long run? He has an articulation disorder and I convince myself that getting his mouth corrected will help with this. Breaks my heart!
Poor little guy. And not too fun for you mama either. I'm sorry. No doubt, he will be a tender man to the needs of others because of his own pain. May it be so! PS Love your profile name!
Ah, yes. Our Laura appears to be much more delayed than Jubilee not being able to answer our questions, even with nods. But…man, can she pound the table when she's mad! Big personalities come in small packages, for sure!!
Sometimes Jubilee appears to understand what we are saying. Other times we could ask her, "Is mommy an axe murderer?" and she would smile and nod in agreement. So it's really hit and miss. She's not much into pounding the table, however, she had scream and cry and probably be heard from wherever you live. How far away are you? Trust me, you've probably heard her.
My "M" has schizophrenia from abuse suffered before we became her family. She was 9 when she came to live in the states with us. Subsequently she had to be hospitalized several times as a teenager. She's now 31 and still blames us for "putting her in that hospital." In addition to the schizophrenia, she is also developmentally delayed so she still doesn't understand that what we did, we did for her (and our) own good. I suppose I'll go to my grave with her still holding the grudges that remain from our and her psychiatrist's treatment of her illness.
Oh my sweet friend, that sounds so deeply painful. Most of us cannot even begin to imagine. I love your tender heart and I love your vulnerability. Your reward will be much when we get to the other side. You are a woman of deep love, courage and strength – and a hero to me! xoxo
Does the reminder that she will get over it and be thankful later help? I can think of countless times that I was angry with my parents for making me do things medically. One in particular is shots. I hate needles they make me feel squimish, when I was about 8 my dad actually had to hold me down by sitting on me to keep me still enough to administer the shot, 4-6 years later I had to go again for another set of shots, so dad thought he would bring my best friend along to shame me in to acting like a grown up. No such luck. I was still so terrified that I totally acted like a crazed heathen. It was embarrassing for me, and my dad, my best friend laughed at me the whole time, although she claimed to have been embarrassed for me. Regardless, I was angry, I didn't understand why they kept putting me through such horrible stuff. I got over it though. It wont last long, and I think once she is seeing better she too will be fine. Since she will have more obvious benefits from this procedure she may even thank you. I can't say that I have ever brought myself to thanking my parents for my MMR. lol
My guess is that she will never really understand any of this. Her cognitive situation is sketch at best. She rolls with whatever goes…well, up until today. And I was so taken by surprise. She's usually the "up for anything" kind of kid. But anyway, we will do our best…and you as a crazed heathen? Wow. I just can't imagine it. xo
I am living all of my judgments I ever made about parenting now!I have resulted to bribery. Joe is back at Dr. Hatch's office every 10 days getting casted right now. At the end of it he will have the tendon transfer surgery. He was absolutely beside himself when we talked about it. After negotiating it was decided he would get a new lego ninjago with each cast and is looking forward to his new ipod after surgery which he can play with while doing his bowel program. I was NEVER going to bribe my kids, oh well! Is there something Jubilee looks forward to she could focus on instead of the surgery?
Awww Megan!! First off, please tell Dr. Hatch and his staff that we send our love. They are seriously my favorites of all time. I get teary thinking of those 16 weeks of casting…driving from Durango to Greeley each week…hit the road about 4:30 am…ice cream at 8:30 am in Poncha Springs…Coffee in Denver about noon…Chick-Fil-A for lunch as we drove…Greeley…turn around and head back home by about midnight. Love them so much and love that I met you in that waiting room!
As for the bribing…I haven't resorted to that {yet}…too many kids with too many needs – I couldn't afford it – haha, but Isaiah and I sneak to Panda Express every now and then when he has his appts {but we don't tell a soul…and no, I don't eat it. I think it's rather gross, but his little chinese self loves it!}
As for Jubilee's cognitive abilities, they would limit what she can understand about looking forward to anything.
But I'll tell ya' what…if we ever get to Wyoming – my kiddos would love to play with the Legos!!
Please don't forget to tell them we send our love! Dr. Hatch, hands down has been our all-time fav 'special needs' doc…miss him very much. In fact when I was taking to Isaiah to his ortho doc here, his eyes perked up and he said, "Dr. Hatch?" "I wish buddy, I wish." xoxo
Yes! My daughter (8) has has a lump on her right shoulder blade since she was about 4 months old. We finally decided she was old enough for an MRI. She had been visibly healthy previously so we knew it wasn't anything serious. She did the MRI this summer, she performed great during most of it, and then they had to do the IV contrast. Doctor couldn't get it in, so we had to come back another day. 3 tries later they finally got the IV in! Poor baby! MRI came back that it is not cancer, but the lump has steadily grown with her as she grows. It has also become less flexible and is tender to the touch. She is such a trooper when she wants to be, but she is insisting that she is NOT having surgery. We are in the middle of an international adoption so the timing is not great! Just not sure what to do. I know it should be removed some time in the near future. As hard as this is, I thank God that my children have not had to endure procedures like some.
Praise the Lord it was not cancer!! Jubilee has been a trooper about everything so far, until yesterday. And that just took me completely by surprise. And she didn't pitch a fit, but no doubt, I was no longer on her "good" list. haha.
Just send her with the neighbor next time. Just kidding. My boys get mad at me or Daddy for his deployments. It isn't the same, but it is never fun. I will be praying that God can reach into her confusion and sort it out for her, that she will have a peace that she is loved and she can trust you with this. She has grown more and more beautiful being loved in your home. It shows.
Okay, I laughed out loud Beccy when I read your first line. Seriously giggling. I'm sure the boys struggle with the deployments…I wish you lived nearby so I could help lighten the load and the boys could join in the wrestling that happens on our family room floor with the big daddy-man…
Thank you for the kind words about Jubilee…it just took me by surprise. Praying for God to reach into her confusion – perfect…that's what she needs..cause so much of life she doesn't understand. What she has is very, very, very similar to Down Syndrome and she doesn't understand much..we're so thankful for what she does understand…but know her situation is very unique.
Love you friend!
Oh, poor sweet Jubilee. And poor Mommy. Praying that God will open her understanding and heal her completely. You guys amaze me… in a very good way. God bless.
I'm glad it's "in a good way"…haha. Thank you for praying for her…she will need it…many surgeries in the days ahead…
My daughter is 10 year old and also with microcephaly and what seems to be similar delays to Jubilee. I hear ya on the answering thing. Sometimes her answers make sense, sometimes she, too, would nod in agreement that I'm an axe murderer LOL! She also has a generally happy and roll-with-the-punches personality. She recently had major leg surgery and didn't want to take her pain medication or her antibiotic. If I got it down her, it came right back up. She now hates doctors, too. Joy of all joys, because we have a follow-up appointment this afternoon. It's so hard when you know it's for their good, but you can't make them understand it. She'll forgive you and move on.
Jubilee has microcephaly as well and she also has a very unusual deletion of a chromosome that is very similar to Down Syndrome…but it is such an unusual deletion there isn't even a name for it! It is THAT rare! Jubilee usually rolls with it all…BUT not yesterday and that's what took me so much by surprise. She clearly was ticked at me. When I asked her about going to Starbucks she responded, "Emma"…meaning she would go with her. Aye-yi-yi.
I am sorry that your daughter has now had a situation that has turned her normal happy-go-lucky into the opposite about medical stuff. Ugh.
We persevere and pray {for each other!} Bless you my friend!! xo
My little boy was FURIOUS when he had an MRI. He was mad about being sedated, he was mad that we had to let the doctors take him back without us, he was mad that he had to wake up in a room without us…he still asks us to not leave him with the big loud machine again. Poor little pumpkin.
I'll be praying that Jubilee gets it as best she possibly can and at the very least is comforted before the surgery.
So not fun! Ruby has had so many MRI's that I have lost count. The ones that haven't been sedated they have allowed me to be in there with her, stroking her leg and reassuring her. She has another scheduled for fall…
Not that it's any comfort but I definitely commiserate with him – the MRI machines are soooo loud!!
Will he have to have more?
xo
I just had strabismus surgery at the ripe age of 29! The surgery is such a blessing. Since I was older, I did not get any depth perception… as noted by the sides of my garage :)… but i did get to stop wearing prism glasses, and well i like not being cross eyed. The surgery was very easy with very little eye discomfort.
That being said, im not a mother, yet, but her reaction seems very 'normal' for lack of a better word. Those eye exams especially when they're doing measurements for surgery always made me dizzy/nauseous and i always left with a headache!
That being said, the surgery is life changing and whether she appreciates it now or never, thank you from this former cross eyed, falling down, head down child.
Aww Loki, it made me teary to read your message. Jubilee will likely not ever understand the "thank you" part of repairing her body, but we know that she will be so much better off {if it works well}…she falls so much and I know that can't be fun!
I am grateful for your words and I am so thankful you had the surgery {and were brave enough to tell me!}. Thank you! xoxo
{PS Giggled about the sides of your garage part of your comment}
Our son Isaac had eye surgery when he was six. Both eyes were turned down and in and they needed to be released! It worked! PTL! He is now 11 and his eyes are great.
The one problem, he had spent 6 1/2 years not "using" his eyes and now he still doesn't "use" them. They are not his first sense. If that makes sense 🙂 He can't find anything! His brain isn't trained to LOOK for things. So we struggle with that a lot. He can totally see. He just learned to read last year!! He is very mechanical and when he is rebuilding his bike or taking it apart (which is most of the time!), he can do intricate things, but if I ask him to get his shoes off the floor and put them away, he can't find them. I have to get him to look at me so I can point to where they are and he sees them. He also can't find his way in a new place. Can't locate the bathroom in someone else's house even if we have been there several times. It takes a long while until he can find it. Forget the grocery store. He is constantly running into everyone because he never looks around and sees where he is compared to his world. It is all quite intriguing really. I am hoping to figure him out someday 🙂 Hoping there is a way to repattern the brain.
As for the surgery, sorry that I can't help you there. Isaac thought the surgery was awesome. In fact his words to us when we met him in recovery were. "This is the best day of my life!" No kidding!! HA! Love that kid!
Hope things work out and that she can see that God put you both in her life to get the best care possible, whether it is a loving hug or surgery 🙂
Blessings,Sue
I had surgery to correct crossed eyes as a small toddler, and have worn glasses since I was 2. In my case both eyes were bandaged after surgery. My mom suggested that you encourage textures with any comforting items.. special blankets, grosgrain ribbon, etc if that's the case. I have some depth perception, but my eyes focus independently, which can also look like a lazy eye, especially when I'm tired. My husband has been an insulin-dependent diabetic since age 3. He remembers hiding and being chased when it was time for shots several times per day. He remembers being angry at his dad for years because he has an inherited version. Best wishes for Jubilee's continued health.
Aww, Sweet Jubilee!
If it helps you can tell her that our 12 year old Olivia had the same surgery at 3 and did great! No hospital stay and back to her bouncy self the same day! This is a huge statement considering she is our challenging one. Adhd/sensory processing issues etc. To this day she has to be held down to receive a shot. Not even kidding.
As much as it is not fun to process through it, its actually probably a good sign that she is upset about the idea of the surgery! Even though she can't put into words what she is feeling she concerned. Considering her "delays" (I use that term loosely 🙂 ) Reacting this way is a positive!! She's not looking at it as fun and games, she is processing the whole scenario and concluding that you are putting her in the situation. Not fun but a totally healthy response. On the other side of it will be more learning and growing! Yippee Jesus!! Sheri
Honestly, my first thought was amazement…she understood what was happening! She truly got it, surgery stinks! Maybe her cognitive abilities are better than I've gathered from the comments, but I was thinking "you go girl!" for figuring it all out. And from a mama of a little guy who falls daily and walks into walls, this is going to truly help! Surgery is in our future, as his glasses and patching have only helped a little, but even the little improvement has increased his quality of life drastically!
(here's hoping she lets mama off the hook soon! xoxo)
Yes, my 8-year old daughter gets upset and angry at me often when it comes to her medical treatment. She has cerebral palsy (thankfully mild affecting her left side) and she's had 2 major foot surgeries and needs at least another one within the next year or 2. She also is a candidate for eye surgery. She wears glasses which she hates and she hates it even more when I email her teacher to make sure my daughter is wearing her glasses daily. It's a battle to get her to wear her AFO which she gladly outgrew. She won't be happy when we get a new one. She also refused to wear her wrist brace and actually lost one. We now just do kinesiotaping for her weak upper left extremity. Hearing aids have also been recommended for my daughter but I've decided not to fight that battle for now. Getting her to cooperate with wearing glasses was the worst battle. I can't tell you how many pairs of glasses were destroyed or lost then found. In fact, one pair, just a week old, mysteriously disappeared. She has put them on the floor in the pathway where we walk all the time causing the glasses to be stepped on. She even dropped them in the path of where I drove my car over them. My daughter thought she got away with that one until I took her with me to Walmart where the employee was fortunately able to straighten out the frame (the lenses miraculously didn't break) because we couldn't get a new duplicate frame because it had just been discontinued. Those were Dora the Explorer frames that my daughter had promised previously that she would wear if I would get those frames. I was desperate enough to fall for that lie. Oh, and she even hid her glasses a few times where I would never have thought to look, like inside a little crevice underneath my casual dining table. She's a clever little girl. I'm so thankful that the brain damage does not seem to have affected my daughter's cognitive abilities. My daughter also gets tired of always going to physical and occupational therapy and is sometimes uncooperative. I just remind her that I only what what is best for her and that all off of this treatment is going to maker her stronger.
As much of a challenge as my daughter is, I feel so blessed to have her. Thankfully, our prayers have been working as my daughter has become more cooperative with her therapists and she is fighting less about wearing her glasses. I may reconsider the possibility of hearing aids if Jackie continues to show maturity in cooperating with her treatment, especially wearing the glasses.
I had surgery for this when I was a child. My son inherited this from me as well. He wore glasses from age 1 to age 15 and then he stopped wearing them and his eyes are healed. What I mean is that he has no eye sight issues at all. He wants so badly to be a pilot and with his supposed eye sight, he would not be able to but he has been cleared by the eye doctor to be able to learn to fly. Only God can do that.
As far as a child being unhappy with Momma. Well, my 10 year old daughter who we adopted from China at age 5 years, 9 months, does not like ever being told she needs to do something. She would much rather watch TV. EVERYTIME I ask her to do something, she gets annoyed and sighs a lot. If it wasn't so upsetting at times, I would laugh. Typical 10 year old girl I am being told. She also has a medical condition that causes some issues at times and she gets annoyed when I try to make things better. Poor little Jubilee. She might just be scared because she does not understand. Why do we moms always have to do the scary stuff like bring our children for their shots or to a dentist? We need to hire this out. Lol!
I hope
Do hope the Jubilee is better. Have you checked into Vision Therapy? That is what we did with our daughter instead of surgery. I was not going to let my 7 year old have eye surgery not knowing if it was going to work. So we found this and it worked. Was a long process & a little costly but for us much better then doing surgery. Because you only have 2 eye that and was not going to take a chance of losing them to surgery. We did the vision therapy and we have not had any problems since.
I love the high chair picture, so sweet. I have 6 with various needs, including genetic disorder and missing parts of the brain. Jubilee reminds me so much of my cleft, global delay girl….who is the only one who gets mad at me for medical stuff!!
We have a cross-eye, double vision surgery next month–for 4th nerve palsey.
We also have nystagmus in 2 other legally blind kids. Jubilee will notice the difference after she gets thru being mad;)
Oh golly…
Having hugged this sweet hearing-impaired sister of mine – my heart goes out to her. And to you.
This stuff is just not fun, and maybe she's getting the hang of figuring out that more not-fun stuff is to follow. I know my mom cried when I fought the nursing staff after the 1789th blood draw – it's hard on a momma's heart to watch her little one not understand.
Praying for you guys. Whatever happened to the Baja? Can we get one?