Google ......and ........

Tonight I sit here awake while Daddy and all 3 kiddos and 2 dogs rest comfortably as I usually do and this could go on for hours. It seems I have an addiction where I would love to admit to playing on facebook and mindless facebook games my addiction is far worse. I sit and google words with an included "and" in between waiting for that magical diagnosis that will fix him. I know its crazy and some of you reading are probably judging me and asking yourself when will I just accept him. All I can say to those in my similar shoes is it's not the delays or behaviors but the health I would like to fix. Those of you with healthy children will never understand the anguish as I sit here hours on end typing in the 1,000 of possibilities of those 16 diagnosis's. Its crazy really I don't even know what to do with the information and similar children I find. I feel like I want to study the special children like they are a science project and group them and see what medical issue is from what. Why can't he swallow, why are his liver enzymes so high, why does he have 100s of seizures. Luke has started waking screaming at night again and just when sleep was going so well for the last weeks. It seems an endless cycle. But what brings me to the computer day after day is no longer the seizures for those I have accepted as something that I will not figure out alone and in time doctors will have a better understanding of why. Maybe not today maybe not tomorrow but in time and hopefully in his time. But for now I accept I can not fix them. But this stomach thing has made me sick with worry. Its not like the unsteady gait he waddles around with , a gait that he has come to overcompensate for. It is instead a scientific test a biopsy actually showing that his small intestine is not healing despite what we have been told to do. He was diagnosed with Celiacs and after multiple biopsies and an expensive genetic test it has been confirmed. However after almost a year of eating gluten free foods there is no healing. So in an attempt to try sometime we have been instructed to remove all milk and milk protein. It seems now that his foods are even fewer and Mustard Seed must be the richest empire in the world. The fact that they can get 2.39$ for a disgusting single size serving of completely gross yogurt that contains no milk or gluten, or 7$ for a small bag of pretzels is completely absurd to me. But we started giving him Vegan cheese (imitation mozzarella) and he does not particularly like it. When I spoke with the nutritionist about having to change all of his like cheese, yogurt, milk etc she even mentioned the possibly of removing all of his foods by mouth and doing a very sensitive predigested formula through the tube. To me taking away the joy of eating seems so cruel and exactly what we didn't want to happen. It took him nearly 2 1/2 years to learn to actually chew his food. While most moms marvel at a child learning to walk I marvels at his "good lateral chewing." But then I hear him say if they can't heal the stomach it can lead to far greater problems for him. If it isn't already a great problem. Their are conditions that present like celiacs that aren't like the T cell lymphoma that keeps popping up in the Google search or perhaps its the other 5 nasty conditions that come to the screen. I already think the doctors think I am insane so how do I ask the questions I fear. The biggest one that for everyone seems crazy but for me seems like such a reality is the D word. I keep thinking what if this is just his stomach failing in a way that can't be fixed. What if they can't help him and this is it. It's maddening to think about it but I can't keep my mind from going there. Until someone can tell me why he can't be healed and have a healthy tummy and perfect blood values than I will continue to Google and worry. Lately I keep thinking about starting over completely taking him to a whole new doctor and giving them no history and having them look him over from head to toe , inside and out to see what they come up with. I don't know why I continue to doubt the doctors I respect and like but I am so sick of them saying things like, "This is Luke anythings possible" or "I've never seen anyone quite like Luke" or "We never come up with any answers but clearly we have a problem" Its maddening, frustrating, painful, depressing and makes me doubt my faith in everything! So with all of that I will go back to my Google search because I have just thought of 2 more combinations I have not done yet! I'll keep you posted on what I find!

The dreaded tube

Okay so its been a completely busy month and just today i had 4 appointments. I have been going crazy filling out medical stuff for school and we also got a letter for potential home waiver slot. So I went to Job and Family Services and have a second appointment with a casemanager soon. I am trying not to get excited but some nursing hrs would be a blessing. Lukes G-Tube was placed this last week Monday after 3 years of contemplating this surgery Daddy finally agreed. I thought he would be okay after the surgery but he clearly is not. He doesn't really want anything to do with it and when I say "look at it - is it suppose to ooze or be this red" he looks sick and says I can't look. So maybe more than anything with this decision is the hurt he feels knowing we did this to him. I am past that I know I did not do this or any of this to him. I never wanted a child that has to HURT in this way or any of the ways that he does. God gave him to me. The day after surgery was rough and I think wow this is only a G Tube surgery some kids have it so much worse. But again I find myself wondering why there has to be so many "HURT" children in the world. Why would he want them to hurt? I keep wondering if I am missing his message because somedays I can't see past the HURT! After we ran Lukes first Tube feed the night after surgery his poor belly grew distended and hard and he was screaming in pain. I really thought oh no they put the tube in the wrong place. But it turns out they just tried to feed when his bowels weren't moving yet. The morphine he had and I kept asking for cause he seemed so uncomfortable was actually slowing and putting to sleep the digestive system so he was just not ready to eat. The second day went better he tolerated the feed but was still very sore. He still seems sore as he is healing and now we are dealing with the rate and the dose and pump malfunctions. I had to switch all the meds to liquids and CVS is still working on that. Daddy is coming around and I just think he needs more time I really feel in general he hasn't made it as far in the grieving process we have had to do in the last 3 1/2 years. I am coming around realizing the life with baby is not what I would have ever imagined. My diaper bag is not filled with toys and books and Gerber puffs but instead its filled with rectal suppositories, gluten free snacks, packets of simply honey, and now gauze and syringes to flush his pump. He is now doing 4 feeds a day instead of 3 during the day and one at night due to the beeping was waking him and I refuse to interrupt the decent sleep he has been getting. He is still eating well by mouth and drinking and actually seemed more hungry. He looks so cute with his pump strapped to his back by this minibackpack if only there wasn't a gaping hole in his tummy with Tubes hanging out! It has been hard for me too as you can see I feel responsible cause I have been left to make the difficult decisions alone somedays with little family support. But thank God for my friends who tell me they know I have made the right choice. Today I am feeling better about the decision the past 5 days have varied. However, I have anxiously been waiting for the doctors to call and tell us the results of the biopsies and it appears that in also a full years time Lukes stomach is not showing any improvement despite the gluten free diet. At this point the doctor still has to believe its still celiacs but is looking into refractory celiacs and other rarer things that could be happening. He must have named 10 different scenarios which all lead to more testing. But the goal is to heal his gut its the small intestine that its the worst. He will not absorb any nutrients if they can't heal his tummy and not mention what it could lead to if they don't figure it out. A suggestion at this point is to remove milk and all milk protein and possibly fructose (we are going to test for that) - Apparently some children with Celiacs have a harder time healing if they lactose issue. I cant imagine being one little person and having this many things wrong with me. It seems so unfair. At least if God was going to make him complicated why couldn't he make it easy for the doctors to make him feel better why does he have to be such a mystery. It SUCKS! Well I am extremely tired and could use a good cry tonight after another argument with Daddy over the tube, bad doctor news, 4 crazy appointments tonight and more to come 2morrow, I am so tired- More Emotionally than anything- While Luke was in ACH getting his Tube my Grandma Vanek was in St. Vincents ICU. So I was driving back and forth between the 2 hospitals trying to spend time with her. On her 95th birthday she got moved out of the ICU and into a normal room and has returned to my moms house for awhile to regain her strength. I know her time will come soon for we can't live forever but I love her so much we have spent so much time together through the years and she has taught me everything I know. Her and I are very much alike! We have made great memories together ones I will hold dear. Tomorrow after our appointments I plan on taking all the kids to visit her and I can't wait! I am tired and this vent has helped tremendously. Have a Happy Thursday everyone! Sweet Dreams!

Having second thoughts

What a busy week Luke had his appointment last week with Dr. Sand Loud his developmental pediatrician. (Very sad appointment cause we really like her and we found out she is leaving). It was weird I really really wanted to tell her I didn't think his catapress patch (med for hyperactivity and behaviors) what working during the day anymore. I mean I have seen it work on the highchair or the shower stall when it falls off him and sticks to a surface it's amazing the shower stall or highchair don't move all day. However, when it's on him that's a different story. The decision to even put him on one of these meds was difficult enough. It took alot of tweaking the dose and changing things before we even settled into a right dose. It has done great for night sleep, before he was only making it 4-5 hrs and not even in a row, now he is going much longer. Most kids on his patch change it every 7 days we tried that but by day 3-4 it was wearing off so we were instructed to do every 5 days. Then after our big care conference with all the doctors we talked some more about how he slept so well the first couple of nights that the doctors agreed we could change it every 3 days. Another prime example of how he doesn't metabolize his meds correctly. Well so back to the appointment Dr. Sand Loud saw him for our 40 minutes appointment (another reason I love her cause she spends so much time with him) but she brought up the fact he seemed very hyper and active and that we were already at the highest dose of catapress per his weight and changing the patch so early that she thought it was time for a new med. I wanted to say something about this so bad so I was so relived it was her idea! Now for the reason for this blog the drug choice Risperdal! As a special education teachers I had many kids on this that tried it some it worked others not so well. It seems such a strong choice for him at only 3. The drug is in a completely different class than Catapress and works very different and I am so worried about the change. Terrified that we will go back to the days of no sleep for days on end. But than I think about the fact we are becoming more and more homebound and his behaviors are really starting to affect us as a family. We can't really take him anywhere, he is climbing on everything, never still. Neuro chalks it all up to the microcephaly, just like everything else, "Kids with microcephaly don't require alot of sleep" "Kids with microcephaly can be very active!" Ugh yes I know, kids with his type of neurological conditions are alot of things I just want to scream because I don't need you to keep telling me. Really I get it I live it you don't! My biggest fear is that Risperdal lowers the threshold for seizures (something we have a little more control of lately). So he is sleeping and hasn't had a seizure in 6 weeks and you want me to change his meds. I want so badly to have a child I can take out in public and enjoy time with my family but will that ever happen. I mean I keep hearing the "kids with microcephaly etc. etc." and then I think is a med change even worth it! I know I have already heard the opinions from many parents who have tried it and there is no way to know if it will be "our magic pill" or not. All I am left with is the hope that it may make things better. The fears though they are there as well what if the seizures come back with a vengeance. I love our fireman but I don't miss seeing them at all hours of the night. As I sit here and realize how I am rambling on and on I can't help but think about how I wish the decisions in life were more about what type of cereal to buy the kids and less about what if I make the wrong decision and a seizure God forbid takes his life! I hate having his life in my hands everyday. I know I don't control that but its such a hard concept to accept. So much easier being Daddy his thoughts on all of this is, "you do what you think is best?" Well my answer to him is easy for you to say, I could make a decision that could hurt him! Well the med change won't happen til after his G- Tube surgery next week anyways which was a start move by my favorite doctor. At least we'll know if the behaviors are from the med and not the surgery! His surgery is scheduled for August 9th, another hard decision that I have been trying hard not to regret but he had another very tired day today and didn't want to eat so on these days I don't regret that decision. But I am a little nervous anytime they have to but him under, terrifying actually. He has recently had the malignant hypothermia precaution due to the possible mito disease lifted so at least it shall make recovery time easier. Although after discussion with other drs. this week about the 2 weeks that he won't wake up period I am being urged to seek a second opinion about the mito stuff. Just this week I learned about some other mito kids who also have Factor V Leiden, which is the clotting condition I was diagnosed when i was pregnancy with Lily. So I have spent alot of time on my favorite medical sites reading up the connection it could have with Luke. Although i have been told over and over they don't test kids whose parents have it. I have decided to argue this at our next mito appointment with Dr. Cohen. I have been rightbefore and if I'm not I can live with sticking him one more time for the chance that we find his mito or a Factor V problem. With him not being verbal it makes it so hard for me to know how he is feeling. Perhaps I am missing some signs. But the constant sleep and low energy are a big mito sign one that I just can't ignore. Okay enough about me but for all of you who read this today can I ask you to say a special prayer for a dad that got on the elevator last week at ACH with me. Through his tears and in speaking to the hospital Chaplain I overheard him tell her, "that he is has said all the prayers in the world and that they are not working, and something to the affect of she will probably not make it through the week" I wanted so much to ask her name or tell him I would pray for her, but the lump in my throat was there and I tried to hold my tears in until he exited the elevators. These are the moments the decisions in our lives that make parenting a child with special needs so difficult, the emotions are something I won't wish on my worst enemy. So strong! So pray for his that little girl today as Heather told me God knows her name!

Little Boy not so Blue (today)!

So yesterday after a very sleepy day for little man, he woke after a second nap looking very pale. Then I noticed a few cluster episodes of him turning blue again. I have never seen them happen a few times in a row. I watched in horror as he grew pale and then eventually blue and then a deep breath and he was back to tired! I just can't seem to buy that that is just his brain forgetting to tell him to breathe- Really? I want to believe the doctors and not ask more questions in fear they will want to start doing more tests but then I worry what if they are wrong and the heart or lungs are not ok! What could they missed I feel like they have tested everything- yes many things are slightly off but there is no explanation why. I was alone with him yesterday cause daddy took other kids to Loyal Oak to swim and I grew angry that he was not there to see these unusual events. I feel like he misses alot of stuff especially cause when he isn't feeling well I always offer to stay with him. 1 cause its easier and gives daddy some time with the other 2 and 2 cause its easier for me if all he does is want to sleep I can clean a drawer, pay the bills get thank yous written! But yesterday when Daddy was not home I allowed my mind to go places that hurts just thinking about it- I kept thinking what if this time he doesn't take that deep breathe - how would i get a hold of Steve and how would i tell him, I thought about all of my friends who have lost their children and I can't bear that- I thought am I doing enough for him - today i put a call into the pulmonologist and am waiting a call back of course now not til Monday- but than I think does he need oxygen during the events or all the time to prevent them- would that even help- and then today he went to school and had such a good day he was so happy and back to himself- so for a minute i want to forget it even happened and wait and see but what if next time I do have to intervene- I was just reading up on CPR tonight on internet- I havent practiced in so long- something tells me I would just do it but would i do it right - would it help- such a rollercoaster with him- his life so full of ups and downs- I wonder half the time what he thinks and feels- I wonder if he thinks I help him or if he wonders why he hurts - it breaks my heart to think he has to go through all of this and I am so selfish to think "Why Me" but Why Why can't he one of the 12 things that ail him - well I should turn in tonight since he is sleeping soundly and I am not!

WARNING-emotional venting

Bad bad day today- and I hesitated even beginning to blog- just when I think I am coping well with being a "different" mommy - something hits me- I hate even complaining about our "different" life and how tired I am of hospitals, surgeries, procedures before surgeries, medications and everything else that comes with being Lukes mom- I can't help but think of Conner's mom Sarah and Hannah's mom Marcey on how I bet they would give anything to have one more day to complain! It feels selfish to complain- but a day spent at the lake with my family today makes me sad- I know its silly but I see moms and dads sitting on the beach and they are so cute talking and enjoying their children while they play in the sand alone - then there is us! Luke is climbing up the hill waiting for us to chase him, Lily is off in another direction and Alex wants to do something like the big kids but daddy and Mommy are too busy to supervise- and Steve and I are never together- we seem worlds apart- we rarely talk- people probably think we are not even together and it probably looks like we don't even like one another- and somedays I swear we don't- we spend our days trying to keep Luke busy and feeding him and telling him "No" to just about everything he touches- I am so physically exhausted most days I just want to go to sleep and not wake for days- I feel too tired to even enjoy these moments- we fight over who will chase him this time and who will feed him- then of course bath him after ever meal- then who will struggle to give him his meds- who will make him stop crying- lately he is so crabby- who will put him to bed- yes zip him in doesn't seem hard but we do this over and over cause he keeps crying - most of the time we argue over what we think he wants but that just seems so stupid- cause most of the time I don't think he even knows- I try hard to give Alex the attention he needs and like tonight I allowed him to spend the night at Kims camper with Daddy while I stayed home with Lily and Luke- I figured once they were in bed I could do some laundry and dishes- but where I really want to be is at the camper with Daddy and Alex enjoying things as a family and we constantly have to take turns so Alex can enjoy his childhood, normal family gathering are no fun either - trying to supervise him somewhere things aren't Luke proof is a nightmare- most family members get tired just watching him and don't offer to help, I think we would be better off taking turns going to family birthdays and parties while someone stays back with Luke cause we can't have him in the heat and he can't stay up too late or he will have a seizure- I guess I am venting on here cause I have lost most friends who I could talk with- no one cares to hear about my situation anymore- friends have a hard time knowing what to say and never want to talk about their troubles cause they don't seem that bad when next to ours, I am so tired being his mom with appointments and such that I don't even have time to work on my friendships, some friends are better at understanding some not so well- it's funny the ones that I thought would stick around didn't and the ones I thought would never last through this try very hard, Its just not the same as a mom a young adult you are suppose to have that one person who goes through life with you through everything but that will never happen - cause I realize I am alone - OK see I warned you emotional venting thats all- need to go switch some laundry and put some clothes away

the dreaded GTube

The decision has been talked about forever, actually when Luke was much younger our old Gastro was ready to put one in. I took him to a new doctor cause I was concerned they hadn't done enough to find out what was wrong with him. The recent decision has been extremely difficult and especially on Dad. I could name the reasons I think Dad doesn't want it like he is afraid he may get infected, he might pull it out all things he tells me . But I can't help but think does he feel that this thing on him makes him appear even more difficult. Maybe I'm wrong but I just get the sense that this is another thing that when he looks at his boy screams I am different. Although he says he is fine with everything some days I think he copes very differently. Maybe I am off base here but we have been together since he was 17 and I think this is hard for him. His issues with weight gain, a bad swallow, a stomach still not healing even on his gluten free diet, high IGG levels, all play a part to reasons why the tube is being placed. The allergist wants to try a milk free diet but is worried about what he would eat and how he may lose even more weight. So the tube is going to be placed first and then he will be fed a gluten and milk free supplement and given foods that are safe for him to see if his stomach will heal. Hopefully he will start absorbing the Zinc and Iron that his body is severely lacking and his IGg levels will fall. The last 2 weeks he wasn't feeling well and alot causing me to have to force food and liquid on him every time he was awake. Something Dad is lucky enough to be at work and not have to experience. If he could only spend as much time with him as I do and see how some days it pains him to eat. As much as he doesn't want this and I didn't either I can't help but to be excited that when he isn't feeling well enough to eat I won't have to force him to so he doesn't dehydrate. I know it sounds selfish and the tube may not change anything but I pray that it turns out to be a decision I regret I didn't do sooner! Odd think to hope for I know but the alternative is worse!

still trying to comprehend a dr visit!

Okay so this week we saw the immunologist , we were referred there since all the biopsies and gene test and positive for Celiacs but after 6 months on a strict gluten free diet Luke is healing. We already knew he had a slight milk allergy only a 2. But the immunologist thinks this could cause healing to be slower so it looks like we will be removing milk and milk protein for a few weeks and then re biopsying to see if there is any improvement. So how am I going to feed a child who is picky and some days eats nothing or drinks nothing but dairy milk, cheese, yogurt etc.. They also went on to test for other autoimmune issues and the results will be back soon. There are other things that can present like celiacs and not be so we just wait!
Then there was the doctor visit to the pulmonologist about Luke's episodes of turning blue. It was a little sad to me that all they could tell me is his brain is forgetting to tell him to breath. Are you kidding I feel like he is smarter than that and have a hard time comprehending this.. The good news is they don't believe it to be lung or heart since he is gasping for breath instead he just loses color and goses blue. The bad news is she explained i may start to see this more often now that they are happening more frequently. Yuck! Well then there was the appointment with the endocrinologist which was probably the most shocking of the week. We again discussed growth hormone which I dont see the point since he is not actually growth hormone deficient. But at the end of the appointment the nurse practioner said "there is just one more thing on my list to discuss." She asked, "have I seen any early signs of puberty, specifically pubic hair down there" I kinda looked stunned and for a minute thought she must have the must checklist . I thought she must be looking at the list for teenagers. I figured she must have forgot this tiny handsome little child is ONLY 3! I must have looked shocked and she said, " A little hair is normal but if its black curly hair thats a problem!" Crap I know what black curly hair is but I could not believe she was explaining this to me! She went on to explain to me that children as young as Luke can hit puberty this early. Some of the children like Luke with different deletions and duplications have satrted as young as 3 or 4! I was shocked and she made sure to tell me that I should call there office if this happens so they can stop it. I kindly said Thank You and realize now she was doing me a favor and by not mentioning this I may have not noticed:) HEHE! But still I am still in a fog! Puberty at 3 or 4 like I don't have enough things to worry about. I am clearly not ready for this! So I will add this to the list the long list of things the doctors have told us CAN HAPPEN and hope it is one of the things that DOESN"T! but still what a week of crazy news! Next week 3 more therapy and 3 more doctors appointments so stay tuned for new developments!

Forgetting How to Breathe

I took Luke to the pulmonolgist today, deep down I think I knew it was going to be a waste of time. I felt very stupid in the appointment because it had been mentioned before. In our big care conference a few weeks ago we briefly discussed Luke's cyanotic events. I have repeatedly found him completely BLUE from his fingernails, chest, lips- he looked like a smurf. However at the care conference we didn't disuss them too much because I hadn't seen them in awhile. Well they came back and are happening more frequent. Sometimes he just grows pale , very pale as if you could lie him in a coffin and he would look like he belonged there. That is my biggest fear. That one of these BLUE episodes could lead to just that. Although the doctors have told me before it was probably just a neurology thing that in that moment his brain was not telling him to breathe. I still paniced what if his heart was defective. what about his lungs. I never want them to test him, prick him, or torture him for any tests but I wanted them to tell me something, find something, that they could fix. Well just like everything else with him they have nothing. Nothing to tell me on why this is happening, if it will stop or anything I can do for him. It is apparently just a central apnea. I guess I shouldn't say just. Cause its bad , I keep thinking hes smarter than that. How can my baby boy not know to breathe. I know that it doesn't work like that and obviously in the part of the brain that isn't working correctly there must be damage to the part that tells the body to breathe. I knew in my heart that what I was seeing was not a seizure but really almost as scary. At least when he is seizing most of the time he does continue to breath even though it is shallow, he breathes. But for know I guess we do what we do about every new diagnosis added to the list, we hope and we pray that it will correct itself and he will be healed. But for now I will continue to panic and be more afraid for him when he is not with me.

Wedding Anniversary and G-Tubes

Tommorrow Steve and I will celebrate our 8th Wedding Anniversary. It's hard to believe that 17 years ago when we were both 17 we fell madly in love with each other. Many things have changed and yes our love for each other has changed too! 17 years ago I loved watching him take care of all of the special needs children I babysat for with the same compassion I had. I used to think what a great father he had. I remember thinking if he could help me with feeding tubes, adaptive equipment transferring in and out of wheelchairs than life with "typical" children would be a breeze. Well I guess God had different plans for us.
It has taken many years and mixed emotions for me to finally come closer to believing God gave me Steve to share in this life -together we could draw strength from one another as we care for our own special needs child. I think he knew it was my calling and Steve was not like most other - that he do could handle this very different life. Life is not like we pictured but together we will carry on for each other and all of our children! The last few months have been trying with Luke's sleep dysfunction, somedays only sleeping a few hours. The stress of it all is even more difficult when you get tired. Dealing with watching your child suffer is difficult enough but being so physically exhausted many nights could make anyone on edge. When I think about the way we have treated each other during those stressful times I get embarrassed. Of all the times in life when two people need each others support more and we would argue. The issue of the G-Tube has caused many arguments. I was completely against awhile ago and then I started to come around to thinking maybe it would help. Daddy has wanted nothing to do with it at all and made himself clear it wasn't an option unless it was medically necessary. The doctors thoughts were always different and although some thought it may help with some feeding, and sleep issues it was never presented as a medical necessity. That is until a few days ago after Luke's recent swallow study when they realized something was going wrong with his swallow function. The main issue with their findings was Luke feeling uncomfortable and him taking in volume at one sitting. So tomorrow on our 8th wedding anniversary Daddy and I will meet with the doctors to discuss the swallow function and play the tape for Daddy and explain its medical necessity. I know that tomorrow will be a difficult day for everyone as we will most likely schedule a surgery. I pray that tomorrow God will give us the strength that he has entrusted us to get through this difficult decision with little stress. I know when we leave the appointment and drop Luke off to Gramma we will we will have more to discuss. As we sit at dinner to celebrate our wedding anniversary and reflect on the last 8 years I hope and pray we can remember why we were chosen for this difficult job!

OK I need you to tell me if you think this sounds crazy

OK many of my readers have known me for a long time. I have always been the girl to get in over my head, take more hours than I can work, the max credit hours, help anyone who asks and never say "no." Obviously when I look at my life and where I am right now I realize God really must have all of our lives mapped out. Scary for me to be admitting that out loud to everyone cause some days I feel completely opposite like he must not exist. However, I can't look at all of the experiences caring for children with special needs and then having my own and feel that he knew he had chosen me to be Luke's mommy long ago! I realized very young when I was babysitting for special needs kids at just 14 years old how extremely difficult it can be on a family. Now I live with it and my experiences having Luke have led me to meet some of the most amazing moms on this planet. Everyday (literally every day since we are at ACH every DAMN day!) I see Moms juggling with their special needs kids and their siblings bustling between appointments, working/carrying special equipment, lifting their children out of their wheelchairs and into their cars cause they have no ramp... I could go one and on about the challenges they face and the expenses they incur. I myself want to build the most amazing sensory/playroom for Luke but everything for a special needs child is twice as much as it should be. We have been thinking about building an addition so Luke would have that safe space to play in except if you figure the amount of money I spend on childcare for the other kids to take him to the hospital and not to mention the hospital bills alone, and gluten free foods, I don't think there is enough to make another house payment for the addition! I have been thinking about going back to work but I wasn't sure if it would be possible with as many appointments as Luke has anyways. So I think I have decided to try to occupy my time (insert your laughter) with a new venture and see how it takes off. I was at the hospital today when a mom I have met there approached me to help her in raising money for her son who needed a wheelchair ramp to get in his house. Now this isn't the first time this has happened I believe ever since I started fund raising for Clarabelle people have come out of the woodwork asking me to help them with their needs. I can't say no especially since I realize first hand what it feels like to want to make life easier for your child that you watch struggle to keep up or hold their own. I want to help all of them but I need help to do so. When I raised money for Clarabelle because 4 paws was a non-profit 503 organization big companies were willing to donate because of the tax exemption. So in order to help everyone who has asked me to I need to form a non-profit. So many people donated to help Luke get Clarabelle and what a blessing. As stressful as it was it was exciting and probably the must meaningful thing I ever did. I saw people give of themselves so unselfishly it was amazing. I met one of the most amazing people in the world by fund raising and her name is Suzan otherwise known as Gumball the clown! She is a professional clown who volunteers every Tuesday at the hospital for countless hours. Unfortunately the hospital doesn't pay or support all of the things she gives to the children she is strictly a volunteer. I have see her make a different in many children's lives. She wants badly to start her own clown brigade like the doggy brigade that is there. However in order to establish herself as part of the hospital they told her she needs to raise at least $5,000. She has also asked for my help. I hesitated asking my friends and family to give me $ for another adventure and I couldn't see how without being a nonprofit I could raise that much $. So if I started this nonprofit I could definitely help her raise the money for her great cause. Aside from meeting many people like Gumball, letters poured in after we appeared on TV and to this day I still receive mass offering and recently a present for Luke from an anonymous donor who I sent a Christmas card to. I guess I feel like one of the gifts God gave me was my strong will to accomplish whatever I set my mind to. My parents helped foster that as well always being very supportive. So I know they will support my printing needs (hehe and maybe they can actually write them off!) So I guess what I am asking is if you think I am crazy for wanting to start this venture. So far the only vision I have is to raise money in any way I can to improve the quality of life for any child or adult with any type of disability or illness. Now I know it sounds vague but that's exactly what I want to do. I want to help people when other organizations can't. My nonprofit could be a little bit of extreme makeover home edition where we could built spaces like playrooms and sensory rooms and ramps for wheelchairs and even vans! We could provide people with equipment like Rifton Chairs that insurance won't pay for. Although I am hoping for many private donations and amazing fundraisers I am hoping that some of these great companies would donate their equipment for my cause! OK enough with the rant - I need to know what you guys think and of course if anyone would like to be on my board of directors committee!

Acceptance

Ever since Luke came along things have certainly changed. I feel like I have gone through most of the stages of grief, the shock and denial are long gone. The pain and guilt were probably the hardest for me I guess because Luke and I have the same chromosomal duplication so I have always felt responsible. Then there was Anger and Depression. I can happily say I feel like I am at the upward turn heading into the final phase Acceptance. Acceptance is a place I long to be but I think one thing that holds me back isn't so much accepting "Luke" but accepting how life is different for everyone with him in it. I have to accept the things we can not all enjoy together as a "typical family." It is sometimes compiled by others leaving us out because of him. It is hard to explain this to many of you but some of my "special mommies and daddies" will understand where I am coming from. My friends some who I have had my whole life find it difficult to talk to me. Sometimes it is my fault I have never been the best listener I clearly prefer to talk. However, I know many of them don't want to talk to me about their everyday family issues as I struggle with mine. Many say, "I can only imagine" when I begin to tell them a crazy story about our day. But the truth is part of me can't help but think there are no words that they can say to make me feel better. Sometimes my friends feel like they are just going through the motions listening to me. The connection I had before Luke came along where I was just a "typical mommy" that couldn't get Alex to nap or eat, is long gone. I can't even describe how I feel like we are on 2 different planets. It would be like having a best friend who speaks a completely different language, the communication is so broken. The more I sit here to write this I wonder if I am really at the upward turn, where I am moving in to Acceptance, the place I long to be. My hope for people reading my blog tonight would be that although you and I may be on 2 different planets, or speaking 2 different languages I promise eventually I will be through all of my stages and get to a place of total acceptance and we can talk again in the way we used to. I just need time to finishing grieving for the child I thought I was having. My true friends will stick around and be patient in this process and wait out or weather the storm with me. The ones who are not here to experience what it will be like to be my friend once I am in the place of total acceptance will be missing out on so much!

Which came first?

I am not sure in all of you know but before I was the mother of a child with special needs I was a teacher of children with special needs. Before that I was a caregiver to adults with special needs. After that I became a friend to adults with special needs. Before that I was a caregiver to children with special needs. I was only 14 years young when I started babysitting for a family with a child with special needs. Quickly through word of mouth I became "THE special needs caregiver in my community." I tried to divide my time and worked many hours. Steve my now husband would come with me and I would change catheter bags, work G-Tube feeds, I knew all the names of the special equipment, and knew all the greatest doctors as I accompanied some families to appointments. I soon became familiar with IEP and MFE's and ABA. I trained to be an ABA therapist and made great money to help me get through my time at Kent State (where I triple majored in Multiple, Developmental and Orthopedic Disabilities K -12). I had the best job while at Kent State I did personal care for adults with disabilities so I got to hang out with amazing individuals and get paid! I developed some amazing friendships. I met the most amazing people! It was my last year at Kent when I became all too familiar with death among the special needs population. One day I was working for Michelle who is still a great friend and one of the strongest most determined people I have ever met when the reality of living with a disability took a completely different turn. It was late and I was scheduled to put Michelle to bed that night and I remember Steve was on his way to pick me up because he never wanted me to walk alone on campus at night. A friend of ours who lived down the hall from Michelle who I had come to know well myself Kimmy was injured when her attendant was lifting her into bed. She simply pumped her leg on her bed. Her attendant was very frantic and Michelle and I stepped in to help. We were having a hard time getting a hold of her family who were away from home and we were waiting forever for the ambulance to arrive. Apparently the ambulance had trouble and broke down I remember calling 911 back and arguing about how long they were taking to get there! Steve arrived to get me and Kimmy started throwing up most likely from the pain, her leg had swollen pretty bad. It was a simple bump but Kimmy was already very frail. Soon the ambulance showed up and her and her attendant were off to the hospital by that time we were making jokes trying to calm her but none of us knew it would be the last time we would see her. Kimmy ended up leaving the hospital and going back to her parents house to heal. However, she never made it back to Kent (where she was about to graduate after years of hard work) she had passed away in her sleep. Her funeral was one of the saddest things I ever experienced I will never be able to hear the song they played, "I will remember you" by Sarah McLachian and not cry. I helped organize a tree planting ceremony that year to honor her. We planted a tree outside of Prentice Hall in her honor. It affected everyone who knew her in a large way and it was that day I realized how death too soon is a huge reality when someone lives with a disability. The years went on and through my caregiving of children and adults with disabilities and now having my own child I have witnessed God take many angels from us too soon. I will forever be changed when I hear of another loss. When I complain about all of my doctors appointments and therapies I think of the children who can't go anymore and the Moms who most feel so alone. I once had a friend ask me if I ever "think of what life would be like if Luke passed away." I was of course shocked at the question but I try not to get mad when people ask me things that offend me. I think it must be hard for people to be "friends" with me. I don't want my friends to be afraid to ask me anything. When my friend asked me I was honest although I didn't want to admit I had had those feelings. But of course I have thought about how different life would be like without Luke. I try not to let my mind go there. But it is a reality every night when I put him to bed that he could seize and not wake up. Clarabelle has made me rest a little easier but what if she misses one and what if he seizes and noone is there for him. Some days with my heart beating out of my chest I fly down stairs in the morning to check on him to see if he is still breathing, especially when he sleeps later than normal. I wish things wouldn't have to be like this but they are. There was one day in particular when Luke seized the longest he had ever seized for- 40 minutes. We happened to be at Steve's Grandmothers calling hours when he started. We were pretty far from the hospital and the drugs the paramedics were giving him were not helping him he had a fever which makes his seizures much worse. That particular day I believe I feared "Death" the most- I kept thinking Gramma Kish was coming down from Heaven and taking him with her. I can't even explain how terrifying it was and how joyous it was after to see him wake up and suck his fingers like he does after it is all over. Sorry to be so depressing on the blog tonight hope I didn't make you all cry! But I will say this to all the moms out there with special needs children or not be grateful for everyday that you have with your children they are truly a gift. The truth of the matter is no one knows what God has planned for us so we must live each day to the fullest. My blog tonight was inspired after hearing of a sweet little boy fighting CF named Connor! I got to visit his moms blog and was moved to tears to see how incredibly strong she is. Which doesn't surprise me I have met some incredibly amazing moms to some amazing kids! I don't know what comes first their strength as a person or their child. People say to me all the time God must have known he was going to give you Luke so he prepared you. Then others say God knew you had a gift and strength so he gave you Luke. I know in my heart that Luke has made me stronger and together we are ready for whatever God has planned for us! Please I am asking all of you tonight to pray for sweet Connor and his family- you can follow Connors moms blog at http://www.notsobrightandshiny.blogspot.com/

Boom!

Can't believe it has been this long since I blogged! Yes the Blogging is therapeutic but I guess I must be having a good week cause I had not much to say. The last week or so Luke has been sleeping to nearly 8 am. I can't even begin to tell you what that feels like for the past 3 yrs we have not only had to fight the seizure monster but the sleep monster was attacking too. There were nights were Luke was literally awake 20 hrs straight some days just crying. I look at the episodes now and still can't tell you what they were only that he would literally scream as loud as he could like he was in pain and nothing would make him feel better. Some nights he would tug at his ears and head like he was going to rip off his ears. Just 3 weeks ago after so much frustration I drove him to the ER it was around 5 am when we got there. Of course same thing we always heard his systems were all normal, no cough, wheeze, ears were clear etc. We were discharged that particular day at about 11am only to arrive via ambulance after Luke's very first "atonic" seizure. At least that's what the neuro called it- it was pretty much an episode of complete limpness and he was turning blue. I had decided since I had never saw him lose muscle tone completely and he was having trouble breathing that I would not give him his Diastat what we use to stop his seizures. I panicked this time like I was watching him for the first time. Many of his doctors were called when we were in the ER because he had just undergo some med changes. 3 doctors came back with suggestions on what they thought we should do with his meds, one thought an increase was in order another a decrease. I left feeling very confused. The next morning I took a stand and called the neuro and convinced him to allow me to make a change I have wanted to to which was wean him off one of his seizure meds. Because Luke was having so many seizures he was hesitant but I persisted. The nurse told me, "so you want to experiment." I said, "if that's what you want to call it then yes!" Just like all the other fights I won! Big surprise and within a few weeks Luke has been sleeping almost through the night (we are down to one brief awake period at around 3:30 am). He is having some smaller seizure activity and I hate to say it is a price I will pay right now. But having him well rested and happy after a good nights rest seemed so much better than awake almost all night screaming some nights hrs on end. The seizures are not lasting long and most involve just some limb shaking instead of a full generalized seizure. Clarabelle even alerts to these episodes. She is truly an amazing gift. In the last few weeks i swear Luke has also been adding many new words to his vocabulary. he likes sing songy words with the same consonant sound like bubble, purple. The 2 words he says most often are of course his 2 favorite things "mama" and "ball!" I wish he would gain the "d" sound back. "Dada" was actually his first word that he lost when the seizures started. Steve tries to get him to say it all the time. He mimics "Gaga" instead. But his newest word has been like music to my ears- "Boom!" I don't even know why I love it so much it is just the cutest little "Boom!" I think I am most proud because it has a "b" sound in the beginning of the word and a "m" sound at the end. It is so cute - tonight as i was getting ready to go to bed I just had the hugest smile on my face just thinking about his new "boom!" When he says "Boom" you must jump and down and say "Boom!" with him. Sometimes he tries so hard to form his lips to get his "boom!" out it looks painful! When I lay him down to bed I must say "Boom!" When I zip him in I say "boom" (Yes I said zip doesn't everyone zip their kids in their beds!) I was negative I guess but I didn't have much hope Luke would be verbal ever. But lately hearing his many new words even if they are just onomatopoeia is music to my ears!

Special Treatment for the Special Boy

So this morning we took the kids to the mall to see Miss Rosa and the Dinosaur Train. I was going to go by myself with the 3 kids and Clarabelle (Luke's seizure alert dog) so Steve could work around the house. However, when Daddy found out Miss Rosa was going to be there he decided to go something about he thinks she is hot. After we arrived I realized I could have never done this alone and was very grateful daddy came no matter what his reason:) Luke couldn't sit still so him and I and Clarabelle just ended up walking around the mall visiting the booths while Daddy, Alex and Lily took in the show. Some days I wish we could all just sit like the other families and watch but Luke couldn't sit still for that long and would cry every time I stopped pushing the stroller. After the show was over a line formed to meet and greet Miss Rosa and Buddy the dinosaur. I told Alex and Lily I would wait with Luke and then they could join me cause it was a super long line. I tried twice to wait in line, Luke was crying and then I would take him out and he wanted to walk away from the line. I can barely hold him that long so I just kept lapping around the line waiting for the line to die down. After an hour or so of circling it was finally manageable so I went to get in line only to have the lady say the line was closed. I must have looked like I was going to cry and the lady looked at me and said "well let me see what I can do." I explained to her that it is very difficult to stand in line for anything that long with my son. She came back and said they will see us. A lady that must have been turned away right before me was standing there very upset and I heard her keep saying they told me the line was closed and then they let them in! She seemed less than thrilled that we got a turn and they didn't. For a moment I felt bad but just for a moment. It has taken me 3 years to get over feeling bad for "special treatment" that some people get offended by. I have family members who actually think it is unfair that we have a placard and get a "special parking spot" or "a make a wish trip." But all I have to say to them is I would trade the perks of this job to have a "normal" family situation any day. I would kill to not go out in public and have everyone ask about Clarabelle or notice Luke is different. It would give me no greater pleasure if Luke didn't ever have a very public long scary seizure in the middle of Chuck E Cheeses at a friends little girls birthday party stealing the spotlight from her special day leading the manager to invite us back on her! But for now I will take any special treatment I can get to try to give my family the normalcy that is taken away by the countless hospital stays, ER visits, and endless seizures that ruin the fun we should be having. So ask me if I care that you think it is unfair and my answer is "Hell NO! Do you want to trade situations that led us here to begin with?- I didn't think so!"

Too many children named Luke

Okay so I know I promised to write every night but the last 2 days have been depressing and I feared the blog would take a serious turn and scare all my followers away. But I guess I started it as an opportunity for me to vent to only the folks who cared to read me, since some people don't like hearing Luke's problems all the time on facebook. Many of you know that Luke was born 3 years ago, some days it feels like longer than that! Anyways I could go on to tell you all about his journey over the last 3 years but I know many of you probably know it. If not you can go to www.pawsforlukescause.com and click all about Luke to get the whole story. His biggest issue is seizures, and I guess sleep. His seizures haven't been too well controlled although in the last weeks he has been doing pretty well. In the past few years some have lasted only a few seconds to nearly 40 minutes. To say that my life as a special education teacher has prepared me for him is far from the truth. Yes it has helped me realized what he needs with his therapies (right now 14 times a month) or his special equipment. But my degree could have never prepared me for watching him go through so much in the last 3 years, no degree could. He is truly an amazing little boy who rarely loses his smile in his fight against what we have come to call the "seizure monster." I have become someone I always knew I could be but had hoped I wouldn't have to for every ones sake. I am sure most of my doctors and therapists all want me to go away and stop calling them by now. He has over 15 diagnosis's right now and about 12 regular doctors. All I want everyday is for him to be healthy and happy. My sadness comes probably out of selfishness but it affects me everyday and although he is 3 I wonder when these feelings will go away. When the weather is nice it gets worse because we visit more playgrounds and public places where I see very healthy, whole 3 year old many little boys with his same name. As I hear there moms yell "Luke" or ask them how old there precious boys are it literally breaks my heart that he struggles to climb up the playground, or trips and falls, and can't run as fast as all of his peers. It is horrible for me to compare him but it is almost like I feel a loss. Nothing compared to friends of mine who have lost their beloved children I am sure but I just wish the day would come where we could go to the playground and my mind would not wonder off thinking about what life would be like if he were like their "Luke." Another part of me realizes how special he is none of those "Luke's" could possibly be as "Strong" as he is. And I bet none of them could make everyone smile and light up like they do when they see my "Luke." Whenever I share my feelings about my gloomy days I know people think I am so negative however, the emotions that I feel are real. I guess I hope to some degree others who have been in my place feel the same way so I know I am not alone.

Makeup, Midgets, and sex changes!

Ok so I promised to tell everyone where the name came from but I am saving that for another day. Oddly enough second post of the new blog and it will not be about "seizures" or "slaying them" or anything regarding Luke. Today was a pretty uneventful day in my house just a little mishap with Lily and Alex getting into my makeup. I realized I need to teach them both how to apply mascara and lipstick because they thought the mascara was for their lips and the lipstick went all over! Literally crisis's like these are normally ever 5 minute occurrences. People will say they understand because everyone has had children but when your friends set their ring tones to circus music you realize your house is a little more 3 ring than everyone elses. So I won't go on to tell you the rest of the acts of the day cause Luke peeing all over the kitchen floor and in the dog food container, fishing in the toilet, climbing over the banister, eating his socks to the point he gagged happen all the time! But a serious conversation with Daddy doesn't happen everyday.

My husband is much different than me, I suppose in a way that is why we work. He is obviously much quieter maybe because he doesn't get the opportunity to add much to a conversation with me blabbing all the time. But tonight in the car on the way home after sharing the makeup story he looked sick. I looked at him and said, "What?" He said in a very quiet voice so Alex who was in the back seat jamming to his favorite song which appropriately is "Mean Girls" by Sugarland "Alex said to me yesterday when I grow up I want to be a girl Daddy!" Of course i just busted up laughing! He didn't find that the least bit humorous and seemed very concerned! Alex has shown a real big interest in makeup, bows, girls and anything pink, especially since Lily was born. Mommy realizes that some not all boys go through this and it doesn't mean anything but to a Daddy it seems harder to cope with. Then out of nowhere we were back to the recent debate on whether to sent Alex to Kindergarten this fall or wait a year since he will be 5 in June. I am 100% certain he is ready but daddy's reasons are all about him being the smallest in the class. I tried to explain that height is genetic he is who he is. Even if we kept him back and for a few years and he was a head taller than most children eventually he will probably be the last in line at graduation when the other children keep growing and he stops. Steve has no confident about being the short one and never has. Apparently he must have had some rough childhood moments relating to his size! So I told him he really needs to focus on teaching Alex to be confident about who he is and not worry about things he can not change like if he wants to be a woman or is too small. Steve said how do I teach him something I don't know how to do. I told him to think about all of the small people in the world who have done great things in their lives. He quipped back, "you mean like the "little people" who they use to knock down bowling pins with, or the midget strippers! All of his examples were about "little people" he saw on Jerry Springer! Even my great words of wisdom couldn't talk me out of this one! We will have to keep working on the whole size issue!

Proper Puncutation

I have been wanting to do this for a long time. The thing that has kept me from it seems like a stupid reason not to go for it- Proper Punctuation (and grammar). I write like I talk usually one big run-on sentence with multiple thoughts. Some of my friends get annoyed and have to reread my facebook statuses just to understand them. Most of my friends don't mind the many thoughts all running together and they actually enjoy them and the TMI! A few people are offended and our friendship has distanced because of my oversharing.
However, I decided to start blogging today because at the park I ran into an old highschool friend. Well actually we weren't really ever friends in highschool. I don't even think I liked her much then! She was in the popular group and I was not! But you know after highschool and with the help of all of these crazy social networking sites everyone wants to be your friend. I left my old friend by saying, "I'd chat again on facebook!" She actually said, "your statuses are so funny." I told her I was thinking of starting a blog (largely in part to not having enough characters to fit everything I need to say!) She actually said, "you should!" So dear old friend who I never hung with (in part because I didn't like you but largely because I feared I wasn't good enough for your "groupies" this blogs for you!) If she thinks I'm funny than I am all in! (It's fun being like by the popular girls!)
See already I have reread this post rechecking to make sure I used puctuation somewhere. Probably not in the right place but at least it will seperate 2 random thoughts. Another problem with me starting this I just want to keep writing and going on and on telling everyone in the world about my life. So I am going to try hard to stick to the title of the blog and I am getting tired. Just last week in response to me complaining about being so tired. My 4 year old who is very witty quipped back, "probably cause you talk so much." So in an effort to not tire myself any further I will call it a post and go to bed. More on where this blog gets its' name tommorrow.