Saturday, April 15, 2017

14 years

I have been a mom for 14 years, in fact it has been 14 years 4 months and 18 days. Some days I can't believe it has been that long and other days I feel like I have been a mom forever. My youngest just turned 2 years old 3 months ago. Since Brendan is disabled and requires a ton of assistance I have never had a break from dressing/bathing/toileting etc. I have been changing diapers/wiping butts for 14 years! I have been trick or treating, finding Easter attire, baking cookies for Santa and watching my children eat a mere few bites of their Thanksgiving meal for 14 years. I have been holding hands, carrying children on my hip along with a purse and diaper bag, pushing strollers and acting silly just for smiles and laughter for 14 years. I have had kids at the same school for 7 years and the rest of them will attend the same school for another 8 years. That is 15 years of going to parent teacher conferences at the very same school. This often astounds us. I have been taking little kids on walks in a wagon for 14 years. I have been sitting on the floor getting little kids dressed, tying shoes over and over again, holding a child in the pool and calling my mom with questions because she is a nurse for 14 years. I have heard the word 'mom' and answered more questions that I could possibly imagine over the last 14 years, actually a bit less since Brendan couldn't speak for the first few years. I have held a crying child, given kisses and found ice packs, checked temperatures, driven hours upon hours to doctor appointments and have worried endlessly for 14 years. I have helped hide teeth under pillows, held their hands or more like entire bodies for immunizations and watched nervously as my children learn to cross the street by themselves.

Sometimes it feels like an eternity especially when I realize we still have another 16 years of raising our children. In 16 years they will all have reached adult hood. Funny thing is that we will most likely have grandchildren by then as the older two will be 28 and 30 years old. Some days it feels like it will never end. I want to be done with changing diapers and not have to navigate through gates on the stairs while lugging down 4 baskets of laundry. I want to move on from this stage which is full of sippy cups, cutting grapes and freaking out while they run around a playground. On the weekends I want to watch the news instead of the same toddler television shows and to listen to the stereo while driving instead of hearing the same movie over and over. Some days I don't want to be exhausted after an extremely busy day and yet still have to bring two children upstairs, change them into pj's, brush their teeth, tuck them into bed and then run up and down the stairs another 3 times before they are finally asleep. It is 8:18 pm right now and I have already been up twice. But most of the days I don't want them to grow up at all. Most days the future scares me to death. Most days I rather them stay little then be learning how to drive or to leave an empty room behind to attend collge. Most days I want to stay right where we are and take care of them forever. Most days but certaintly not every day!

I love watching my kids grow. I love watching them learn new skills. I love hearing their adorable laughs. I love when they run up to give me a big hug and kiss even if they catch me off guard and knock me over while picking something up off the ground. I love seeing their infectious smiles over something so trivial. I love hearing "I love you mommy, your the best mommy in the whole world". I love going on walks with all 5 with some on a tricycle, others on skates and one still in a wagon happy as can be. I love hearing them learn to count for the first time, repeat funny phrases or sing along to popular songs. I love watching the older siblings play with the younger siblings or take on a parental role without me even asking. I love it all, every single phase, and I know one day I will miss all of this. One day they will be all grown up. One day they won't need me to kiss them better. One day they won't need me to make them a birthday cake. One day this house will be quiet, too quiet. One day life will be completely different than what I have grown accustomed to over the last 14 years.

I don't always like seeing my son grow up before my eyes. I don't like that my oldest is turning 15 this year, how can that even be happening? I don't like watching my 12 year old step daughter transform into a woman. I don't like having discussions about alcohol and drinking and driving. I don't want to lay in bed wondering when they will be home. I don't even know how I will survive their teenager years and they are already upon us. Maybe I will just keep enjoying these innocent days because before I know it I will have (hopefully) survived 16 years of raising teenagers!

I do look forward to being able to think for a full 5 minutes without being interupted. I look forward to not procrastinating at making a phone call because I never have a moment to myself. I look forward to not always being exhausted. I do look forward to being able drive in the car without Nemo playing on my stereo for the 100th time. I look forward to not wanting everything to be just right but often failing at making it so. I look forward to sleeping all night long and even past 7 am once in a while. I look forward to being done with changing diapers and adding to the landfill. I look forward to wanting to go somewhere and just grabbing my keys and head out the door. I look forward to many things but I will never wish my children's live's away because these moments are precious and I will enjoy my 30 years of it! I may be exhausted, I may get tired of the same monotonous daily tasks, I may dislike the 7 weekly loads of laundry but I love my family. They make me smile and laugh and they are the ones that make this life all worth it!

14 years down and 16 more to go! I got this!

Friday, April 7, 2017

What a week! Vasectomy, Softball and nonstop as always

5 kids is enough for us! We are done. We love our children but we can not handle 6. We have been talking about a Vasectomy for years now. Lily was actually a surprise. We were done at 4. She definitely fits right into our crazy family and I can't imagine life without her but 5 kids is way more exhausting than 4. We were supposed to get this done while I was pregnant with Lily, never happened. She is 2 years and 3 months old and we finally got it done. He is definitely going back for a recheck because I have read many stories about post vasectomy babies being born. I do not need another surprise, one was enough for us!

Why did we wait so long? #1 Reason is that Derek is deathly afraid of needles. He doesn't go to the doctors. He doesn't go to the dentist. I got him to go to each once in the last 10 years. #2 We totally procrastinate when it comes to anything to do with ourselves. #3 Neither of us like to make phone calls. We really hate making phone calls, we fight over who has to call in the pizza order. We love on line ordering! Pretty bad, huh?

I had to make the phone call to set up the apppointment or he would have never gotten it done. He was very nervous. I thought it was very painful but later he told me that he was just freaking out about the needle. He even had to put ice packs on his head. He brought up Brendan and we both wondered how in the world he has gone through everything he has gone through and still isn't nervous going into surgery. He made it through the surgery and then was a total champ. He got to chill for two days but having 5 kids and owning our own business it was back to the grind. I won't allow him to lift Brendan. We switched our morning routines and got him dressed and ready every morning and have done everything that needs to be done throughout the day. I even had to complete his work outs on my own which totally killed my back for two days. We just do what we need to do in this house. 3 days later and he seems to be doing awesome. He said it wasn't bad at all and hardly painful. Just sore at times but he is sore from lifting Brendan constantly and it doesn't feel much different. We are so glad we have finally gotten this checked off our list.

Makayla signed up for softball again and Drew is starting Tball. Brendan is in Unified basketball and Chloe has winter cheer so we are busy! Softball practice started this past Monday, we found out Sunday night. It was pretty cold but since we couldn't fit in Brendan's work out we brought his accessible bike and he rode around the track and then I took him grocery shopping and he walked the entire time. It was the fastest he has every walked. He has a seat on his walker so he could take breaks but he kept up with me and surprised me at his pace. In the past it has been total torture taking him to the grocery store. I would have to stand and wait for him in each aisle. This day he would catch up to me every single time. I would shop and know he would be right behind me. I couldn't believe it. After over an hour of shopping he chose to walk from the check out counter all the way to the car without stopping.

Life has been a whirlwind this week yet again. We made it to Friday. The worst part is we have to work all weekend because our employee can't work Sunday.

Let's just hope for some warmer weather. We need to get Brendan outside to learn how to use his smart drive. We need to practice some softball. We need to have some fun with these kids. I have the urge to go Spring shopping too. At least I get to buy items for the little kids all the time from our own store. I am pretty sure they already have a summer wardrobe.

Even with everything going on I had him sit in his knee immobilizers for over an hour tonight and stretched his quads

Sunday, April 2, 2017

A Whirlwind of a trip but we are home!

Now that was one exhausting week. Not only for me but for my husband as well. I think we both know that he had it harder than I, not to mention this is the 2nd time the 2 year old got sick while I was gone. Not that my life was easy this week mostly because my back pain is letting me know that Brendan isn't a little kid anymore. I actually think lifting his equipment into and out of the suv trunk was more difficult than lifting him all week long. I missed my accessible van every time we went out and we were out and about a lot! Everyone was extremely nice to Brendan and all of his 1000 questions. Every person made an effort to listen to what he was saying as he still isn't always the easiest to understand and they were all so patient with him. He always makes friends with the pilots and flight attendants and recieved many free drinks and snacks throughout our trip. He still talks to EVERYONE which can be embaressing for me as I tend to by shy. I will talk to anyone that talks to me but I am not the type to strike up a conversation and he certaintly is that person. I have no idea where he gets it from. We tried to have some fun while out in Texas. He loves to go out to eat. We went to the Waterway, to the mall and enjoyed Galveston.

My husband and I have been burning out recently. We have been working with him constantly since he had SDR over 2 years ago. It is exhausting. It takes time away from the rest of the family and it gets monotonous. Maybe we all need a week off here and there but then I feel beyond guilty. I never feel like we do enough. Going to Texas gives us that reboot. We get a new work out and get excited once again. Recently Derek and I have been worried that Brendan can't progress due to his weakness, hip subluxation and lack of determination. SPML and a tendon transfer at age 14 was harder than I expected. He took a long time to recover and is just now bouncing back and starting to progress. Mike Poole predicts that he will walk in canes but it will be a long term plan and it all depends on his determination. He is lazy, we all know it, 5 months later. He lacks determinatoin and we need to figure out how to help him gain motivation. He is used to everyone doing everything for him and generally lacks any sort of drive.

Brendan's week of therapy was mainly about getting him to stand correctly. We stretched him out big time and then got him to feel what it was like to stand straight and tall. Something he never enjoys or does on his own. I get him to stand tall in his stander and that is about it. He constantly crouches in his walker and this has caused his quads to become tight. His hamstrings are looking good since SPML so we need to focus on stretching him out, standing tall and moving more reciprocally.

The kids were all great for their dad. They missed me but did awesome! The 2 year old even got sick and while she was mad at me for not being here and kicked the phone away and wouldn't video chat with me she let her daddy take care of her. She was very clingy with me upon my return and wouldn't let her 4 year old brother near me but she is still under the weather so that could be why.

We all survived another week and we won't be going back to Texas for another year unless he needs hip surgery. We decided this family needs a break. I have been gone for 7 weeks in the last 25 months and our family isn't used to anyone leaving for a day nevermind a week or more at a time. We received horrible news right before we left for Texas that his left hips is 50% uncovered. The docotors here want to perform a very invasive hip surgery which I am completely against and don't feel it is the best choice for his hip condition. Dr. Yngve and Dr. Nuzzo perform a different kind of procedure that would be easier on all of us.

Unforuntately this mama totally messed up and missed his appointment with Dr. Yngve while out in Texas. I wrote down that it was on Wednesday and even had his therapy scheduled in the morning that day so we could drive 1.5 hours to attend. When we arrived I noticed there wasn't any other disabled children in the waiting room and had that sinking feeling. I was a day late. He also started vacation the following day so I was out of luck. He wasn't in the office that day and there was no way I was going to see him. I was crushed. I really wanted to talk to him about his hip and to hear how he felt his right arm was doing after the tendon bicep transfer. I am still kicking my self for that one!

So we are home and trying to rest up. I got the worst sleep all week long and am happy to be home. The kids were actually sleeping in today but the dog woke me up at 7 am to go outside which then woke 2 young children up for the day. The story of our lives!

Standing So Tall!

Goodbye Texas

Monday, March 27, 2017

We made it!

We finally made it to our room around 7:30 pm. It was a long day of traveling. We left the house at 8:45 am so we were exhausted by the time we got settled. We had a connecting flight but all went well. Brendan is an awesome traveler but he was really hyper all day long. He talks to everyone and he has zero social filter so he yells across rooms saying hello and asking questions. Honestly it can be embarrassing and he refuses to listen to me when I ask him to stop talking to everyone under the sun. Everyone was beyond nice though. They moved our seats on the first fight to the row right behind first class which has lots of leg room and our seat neighbor was amazing! He was so patient and kind and answered all of Brendan's questions. Brendan actually had great questions. He has improved in his conversations and asked questions based on the gentleman's last answer. I was really proud of him. He never even asked the same questions twice! One thing that I noticed is now that he is older everyone listens to him and NOT to me. He kept requesting to sit in the very back of the plane on the 2nd leg and they actually listened to him and switched our seats. This was after I said were fine being in row 18. Normally they move us up to the front of the plane but let me tell you NC listens to Brendan. Besides walking him down the entire plane it was actually fabulous being in the last row and having no one sit with us. He made me sit on the aisle so he could 'sit by himself'. He wouldn't stop talking to the flight attendants but they were all super sweet and kept giving him free snacks and drinks. I also got a free adult drink which was awesome. I needed one on this leg of the trip!

Everyone was very helpful again. American Airlines was great and is right up there with Delta! United is still a no go for me. I had many people offer to me help which I almost always refused. The airlines actually send someone to assist you off the plane which can be very helpful. It is hard to push him in his chair along with his walker up the ramp to the airport so I love when someone helps us do that. NC was a little too helpful and someone came with us everywhere even after I said we were all set. She came to the bathroom, to get some food and all the way to the next gate. I guess it was helpful but I always feel so awkward. I am used to doing it all myself.

We went with Dollar rental this time and Brendan got to pick his vehicle. He loves this part and he had 5 different choices. He picked a KIA (I think because someone he watches on youtube has one) and it is pretty nice. It fits everything with the back seats down.

We have been hanging out today waiting for therapy. We chose this hotel because there was an awesome employee here the last time we came but he no longer works here, unfortunately. He was awesome with Brendan. So far everyone has been nice and all make an effort to listen and talk to him.

Wish us luck with therapy! I am so nervous this time. He is still weak from SPML. His right arm has healed and he doesn't seem to favor it any longer which is great. I am glad we waited to come here because it definitely took a good 5 months before his arm healed. We actually see the doctor on Wednesday that performed the surgery so we will see what he has to say.

The family hates when we leave as do I. The girls made us a nice picture, wrote a note and left a video for us since they figured they would sleep in. I love my family.


Thursday, March 23, 2017

Here is how to use the smart drive by Max Mobility

The good, the bad and the ugly!

This week has had its ups and downs that is for sure! We saw Brendan's orthopedic and received some devestating news. Then his max mobility arrived which means insurance covered it. We are off to Texas in just 3 days and I am not ready in the least bit. My brain can't take much more. I am emotionally drained.

So we went to check on his knee before we head off to Texas and all looks okay. His knee isn't doing great because of his poor walking pattern basically his entire life. His knee cap is higher than it should be and a tendon is over stretched which is partially why he can't stand up straight. His tendonitis is doing okay but his knee gets very hot to the touch when he is working out. If we ice it afterwards he seems to be okay. We haven't had him walk 30 minutes straight since the pain began so we aren't sure how well he is really doing. We also checked on his hips and of course the dreaded words were used. SURGERY. Brendan's left hip is 50% uncovered. It is basically sliding out of place. I am extremely upset about this because I have done everything I could think of to help this hip stay in place. It has been migrating since he was about 8 years old. Now it could stay at the 50% or it could get worse. We just don't know. We can not predict what will happen. Of course the ortho surgeon wants to cut him open, hack through his femur and bolt it back into place. Definitely NOT how he explained it but most definitely what happens and absoluletly NOT what I want to do. Thankfully for facebook groups I have found over the years I have found less invasive procedures out there. I kept them in the back of my head because maybe I just knew this day would come.

Dr. Yngve and Dr. Nuzzo perform a different style of hip surgery for our kids called SLOB and Cafe door. Of course these are the doctors that also perform less invasive SPML. The ONLY two doctors that I have found to actually help our children while making it less painful and have less recovery time. I give them a lot of respect because everyone else honestly doesn't seem to care what is best for our children. They see $$$ signs when it comes to these operations. I wasn't given any advice on how to keep his hip in place. I wasn't given any other options. It was well he needs surgery and I would do this in a few months. Oh and he also told me Brendan is struggling to walk now and will never even get back to the point he is at after this surgery. So of course I cried right in front of the doctor and who knows how many other people working around me. I didn't care. I only cared that I do NOT want my son to go into surgery for the 11th time. I do not want his hip cut and bolted back together. I had a mini melt down. I cried for most of the night. I had a pity party and that is okay because sometimes we are allowed. This life isn't fair. This life can really really suck at times for the lack of a better word. This CP is destroying my son's body and has given me a head full of grey hair and it can take a hike!

I am so done. So sick of always getting bad news. So sick of him having to live this life of pain and appointments and surgeries. BUT I can't be like this for long. I have to get over it. I have to move on. I have to smile again and pretend this life is just fine. We are going to be okay. I know that we will all get through it if it comes to that even if I don't want to. I do know that this doctor will not operate on my son. I do know that I am holding off because no one in this house needs a surgery right now. I do know that it does not seem to cause him pain so I am not going to do this to him right now. I do know Dr. Park told me if his hip had gotten worse (over 50%) after SDR he would need hip surgery but it hasn't gotten worse. It just got back to pre SDR subluxation. I do know god for bid if he does need surgery I will make sure Dr. Yngve or Dr. Nuzzo operates on my kid to save us all some pain and misery.

So CP has sucked the life out of me yet again and boy do I hate when it does that. Sometimes life isn't fair. I know some people have it way worse than us. I know that this news is by far less devestating than if the cancer word was brought up. I know all of this but my heart and my brain don't care. They just want to cry and scream and be mad for a while. I tell myself and my husband that I am allowed. I have been living this life for over 14 years and I am tired. I am burnt out. I just want a break.

Breaks don't happen around here. Today I got a call at 7:30 am that his smart drive by max mobility arrived and his PT's boss basically text the mobiity company to say that she wouldn't be there. I was NEVER even informed his device was ordered or being delivered today but thankfully due to owning our own business I was able to go to a 10:30 am meeting so that he could get his power assist device. Now this is super exciting. It basically gives his manual wheelchair power assist. It will save his shoulders and arms from getting a beating wheeling himself around his whole life. I have never wanted a power wheelchair. I know he will have one some day but not yet. He is awesome with his manual chair and it has been great therapy for him. This item allows us to keep his small chair yet give him some relief. He needs to learn how to use it but I know he will. I took some videos of him learning today. We just need the weather to warm up so we can go outside and practice. It is really neat. He got the newest version and insurance paid for it. So today was a bit of a happy day even though those lurking feelings inside of me keep wanting to creep out. I am not allowing them but I am pretty grumpy today.

Sunday, March 19, 2017

T Minus 7 Days

We leave for Texas in just one week. Let's lay on the mommy guilt! I feel so bad for leaving the family. My husband has to be a single dad for 4 kids and run our business all on his own. I am not sure I could even handle all of that! I am off without the baby this time so it will be pretty easy for me.
I really hope that this therapy session will be beneficial. I hope he can work even with his knee bothering him. I hope that we makes some progress. I know he is so weak from surgery and the alcohol blocks and that scares me. I don't want this to be for nothing. Part of me wonders if he will continue to improve or if he will stay the same and then I see facebook posts about children walking in their canes 5 years post SDR. Then I remind myself to never give up, never think he will stay where he is at. It is difficult becuase he is growing like a weed right now which definitely inhibits his progress.
Brendan got his x rays done yesterday and we see his orthopedic on Wednesday. We will hopefully see that his knee is doing better. Fingers crossed.

So here we go for another adventure. Brendan can't wait to video everything. We are possibly getting him his go pro he has been asking for. He loves making youtube videos and it is great recording the kids and our adventures. One day they will be all grown up on us. It is going by fast and I still can't believe he is already 14 years old.

If you or your child is pre or post SDR this trainer is one the best. He really has a gift and can bring out that confidence in your child. He can ge them to do things in just a few days that you have been working for years on. Check out Walk This Way USA