My husband sent me this article written about special needs mom. I get a lot of articles, poems, etc from people but this one really hit me. It is so true. I encourage you to go read it so you will understand my responses. I don't think any of the "special needs moms club" writes these pieces so people will feel sorry for us or feel a need to reach out. We do this so people will understand.
1. I couldn't agree more. I may actually get out for a night to see people but it's rare and even when I am there I still feel lonely. It's a different type of lifestyle and any time I wish I had the freedom to run out to dinner or to a movie I feel very guilty. I feel guilty because I know the only way to have that freedom is to lose someone very special to me and that's not acceptable.
2. Wow, this is true. Just this week we had a massive fight over the failure of understanding what the other party needs. We don't get much time to ourselves for "us" time. Yes we have a nurse and we are OH so lucky but that nurse is for us to work. On the weekends we have so many errands to do while the nurse is there we still don't get much time to ourselves. However, we recognize we get more than a lot of other special needs families. We also get zero time to work out so I don't feel as pretty as I used to which affects the way I display myself to my husband. However he doesn't ever seem to mind. My husband is a great dad. He is my best friend and I love him dearly.
3. I would prefer someone ask me what happened to Jude. Last week I had someone that was very inquisitive. She herself had battled cancer so I think that is why she is okay with her questions and I had questions for her. It was refreshing to have someone that asked me so much. I want to share with you what happened rather than you just wondering. I am also not easily offended by anything rather it be Jude or just everyday life.
4. Oh my goodness this fits me. I am constantly convinced I am dying young like my mom did. Well okay not so young anymore, but you get what I mean. I am always worried about something happening to Emily or Mike too. Why? I worry about myself dying because I don't want to miss the good times and I don't want to leave my family without me. No one will care for Jude the way I can care for Jude. I don't want him in a home if something should happen to Mike and I both and I worry his care will just be to much for another party. I worry about something happening to Emily and Mike because I just don't think I could make it through something like that. Ugh, just hate thinking about it.
5. That is summed up in the article. We can tell what Jude needs just by his body language.
6. Jude cannot clearly say he loves me, but he tries. I know what he is trying to say. I also cherish each time Emily says those words and I cherish them each time Mike says them. They mean the world to me. I once wrote about and article my cousin shared about a disabled son telling his mother than you for caring for me and she replied it was her honor. I totally agree. It's my honor to be the mom and wife of my amazing family.
This weekend was a whirlwind of appointments and attempted relaxation. I took Friday off work because Jude had a sleep study appointment at the Plano Pediatric Sleep institute. They were planning on studying his recent seizure activty and possible additional sleep apnea. I sent a picture out to family that looked like this.
However this was only partially correct. This is how Jude really looked.
He hated it! He cried, and cried, and cried. I administered two doses of his Valium and he still cried. He tossed, he turned, he whimpered............he was miserable. I don't think we will ever do it again. I trust the doctor's that they were trying to properly measure his seizure activity and measure his sleep apnea. About 1am I comforted Jude and I then strongly instructed him to go to sleep and he was a good boy and finally minded. He slept from about 2am - 5am. Once the attendant woke us up we gladly packed out bags and headed for home. We entered our neighborhood only to find that NASCAR had already shut our roads down..........very very early in the morning. So I found a back route via a dirt road to my home and slept soundly in my comfy bed for an hour (Fleck would say my bed is NOT comfy..lol). When I got up Jude was still sleeping. Mike and I kissed him goodbye and headed out to celebrate Mike's big 40th birthday.
We headed to Horseshoe Bay Texas and the Horseshoe Bay Marriott. I had points to redeem so the vacation would only cost us dinner and gas. The overall rating of the resort was about a 7, but overall it was a great mini vacay! The wildflowers were amazing in the Texas hill country. They looked like carpets vs our scantily laced roadways. Even the cemeteries were loaded with bluebonnets. I sent this picture out to a few close friends showing a wildflower perserve we found.
The flowers were so colorful and just made me happy! Not to mention there was a great horned owl at the preserve with her two baby chicks. It was an amazing site. She was close enough to see she and her babies very clearly.I felt very honored to look at her so closely.
We took all the country roads we could to our destination and then back again. It was very nice. It gave me a chance to breathe deeply and realize what matters. Sometimes we focus so much on what others think, what they do, and what they see that we forget to...... just be ourselves. It was nice to be reminded of that.
Once we got home I thanked my friends "The Gena/Gina's" and our nurses that helped make this quick excursion possible. I held Jude and listened to Emily's stories. I was happy to be back home. The people that helped make this overnight trip possible are such angels!
So I got back to work today and it was very very busy...which is a good thing. I have realized as an adult that being busy means work... which means you get a paycheck! Then the Boston Bombing hit. At first I was so busy that I wasn't my normal "reporter" self. I didn't panic, or share the information, I just continued to work. However, once I got a break and reviewed the reports I was just heart broken for those that were affected by this tragedy. I have never really understood violence against others. A victim of violence myself I have tried to find a more positive path in life and therefore I cannot understand those that seek a more darker path. I know some of my friends prefer not to even know that tragic situations happen. Even that can hold both positive and negative outcomes even though I can understand their reasonings. However, I felt the need to mourn for those involved in this situation. My heart had to break moment for the mom/dad that lost their 8 year old and I had to ask why. What possible polictical statement could their be found in bombing a mass positive function that promotes charities, proper health, and achievement of the human body. I don't get it.......however I guess there is a lot I don't get these days. From friends not being who they say they are to horrific worldy events. Sometimes you just have to throw your hands up and say........I surrender. I accept things are sometimes out of my control. All you can do is be the best person YOU can be.
Last night I came home from work and Mike's parents were over for his birthday. They are elderly and sweet as can be. I listened to his mom misunderstand everyone's discussions and his dad tell me stories from his own childhood. It was great except for the fact that Mike is from a family of 7 and speaks louder than anyone I know when his family is around. It literally makes Emily and I laugh. So when we all parted ways I logged into my computer for a brief moment and took a breath. Emily decided to talk to me at that very second.
Me: huh? Emily: Gees mom you cannot multi-task Me: Em I am listening just give me a minute Em: It's like it takes a second for your mind to wrap around what I am saying Me: It's because I do so much multi tasking through the day Em: uh huh
She probably just wanted my attention but I needed a minute. So later that night as I was heading towards Jude's room where I had set him up with his breathing treatment. I was pushing Jude's IV feed pump with my foot, while holding his toothbrush, and holding all his medications that I just drew up. I passed Mike in the hallway and playfully muttered "Em says I can't multi task". Mike chuckled and I heard Emily say...
Em: No mom I said you can't multi task while you are on the computer Me: That's not failure to multi task Em that's me time Em: oh
When I learned I was pregnant with Jude we were so excited. I did the normal things any expectant mom does like planning what the room would look like and the colors we would use. I knew I wanted to go neutral because our plan was to have two children. Then Jude threw us for a loop. I had decorated Jude's room in adorable farm animals. I decorated large letters that spelled his name that hung on the wall. I had adorable bedding, a hand painted rocking chair, and so much more. Then we kept getting more bad news.........and I shut the door. I couldn't look in his room anymore. Material things don't mean much when you aren't sure your baby will make it.
When Jude was born he spent most his time in our room like most newborns do. However, he stayed in our room because of his seizures and diagnosis that were given at three months of age. I never ventured into Jude's room much except to look around. I would grab some clothes occasionally, but eventually the clothes even made their way downstairs. However, I will never forget taking Jude into his room and laying him down in the crib for awhile. He loved it.
This is one of my most precious video's I keep on youtube.
Now Jude has his own room downstairs that was made from a converted dining room. We still have a baby monitor that picks up if he is vomiting or seizing. We have a little armoire that holds his clothes and a shelf system that holds his supplies. The walls are red since we know Jude can see that color and the ceiling is blue. Emily spent an afternoon perfectly placing glow in the dark stars on the ceiling so it would look like Jude was outdoors at night time. He has shelves made out of tree branches, a bear rug, adorable matching bedding, and "Welcome to Camp Juders" written on his wall. I know Jude doesn't understand what his room is about, but it's still his room. One of the first things the EMT'S always report to the hospital upon arrival from an ambulance is "he is well cared for with a very nice room". That is both nice and sad to me. Nice they take the time to realize Jude is so loved, but sad that so many special needs kids are unloved and not treated well.
I wanted people to see more than all Jude's equipment when they walked into his room. More than a hospital bed, an IV pump, and oxygen meters. I wanted him to be a kid and my kids have special rooms. It's not that important to some and in the grand scheme it's really not important at all, but I still wanted it for him and I am proud he has it.
I am writing my blog today without some names to protect those involved with this situation. I felt like I needed to write about it because the whole situation to relieve some stress.
I have been blessed in my life with two amazing children. My first born was with my first husband Joe. He is a kind and decent man but we just didn't click as husband and wife anymore. It was more like brother and sister and I just wasn't happy. It was me that broke off the marriage and I still remember the guilt I felt over hurting my ex. He had a hard time at first, but never once did he ever question my mothering skills. In fact, in counseling he said bluntly that the best place for Emily was with me and that he would never dispute that. The divorce was hard, but it went very smoothly because we were both looking out for our child's best interest. We negotiated on child support, how it would be paid, health insurance, and everything else that is involved with the dissolution of a marriage. We agreed to never say anything negative about each other or the situation in front of Emily........and we held to that deal. We never plotted or schemed to use her in anyway. We never coached her on things to say or ever put her in the middle. It took awhile but now my ex and I are very comfortable around each other. He provides above and beyond what we ask for Emily. In fact, he just gave her the money to obtain her new pageant dress which is amazing. He is a good dad and I KNOW I am very lucky and so is Emily. Not only does she have an amazing dad she also has a great step dad. The kid is set.
So currently I am watching a very good friend of mine go through a very nasty divorce. She was stuck in a loveless marriage that she endured with a smile for a very long time. When she finally got brave enough to ask for a divorce she was under the assumption her husband would comply in the best interest of her children. However that hasn't been the case. One of the problems with this divorce has been that my friend is probably one of the nicest people you would ever meet. I joked with her once that she probably woke up singing Disney songs. I was not at all shocked when we stayed the night at a hotel and the next morning I heard her in the bathroom singing the Sound of Music. I promptly informed her it was way to early in the morning for that merry crap so she nixed the songs until about noon. FYI ~ Don't ever try to watch a musical with her she will sing every verse. Anyway, due to her profound gift of being so sweet and innocent she has wanted to believe that her ex husband still has a heart. She has gotten some very horrible wake up calls and it's been hard watching her golden heart start to turn black due to the cruelty inflicted upon her. She has learned that there are some very dark sides of life. She has slowly started to learn that she cannot just lay down and let someone walk all over her, but it's been some rough roads getting to that point.
I wouldn't use the term "like" for her ex husband, but I would associate with him. I didn't like the way he treated her during their marriage, but I kept my nose in my own business. She would rarely get away without him calling demanding a time when she would be home because he was tired of watching the kids. Those phone calls would also annoy the crap out of me when my friend and I were hanging out. I don't remember him EVER taking off work to take the kids to a doctors appointment, I never once watched him change a diaper, I never once saw him cook, I never once saw him clean, I never once say him be involved with the kids when they were married. I think I may have seen him hang a piñata once as my friends insistence. I did see him constantly playing video games and ignoring all aspects of life going on around him. I also witnessed him "tink" his beer bottle on a table when he wanted another one...........problem is my friend brought it to him. I would have pelted it at his head. Now let's go over what I witnessed my friend do. I saw her crafting with her kids, taking them to see Santa, working with her son on his schoolwork that he was having such difficulties with, encouraging her kids to eat their meals, buying them clothes, taking them to doctor's, planning their birthdays, and so much more. She was really the epitome of a good mom. If anything her only downfall was she let them walk over her sometimes too, but she is getting much better at stopping that issue.
So during this split the ex husband began insisting on a 7/7 split and to give my friend ohhhhh about $150 a month in child support..........sigh. Now let me state that I understand some people agree with a 7/7 split. I don't! I don't think it's in the best interest of the kids and I take issue with a man that was not involved with the kids during the marriage but then insists on a 7/7 split after the marriage. This suggestion has financial gain written all over it. However, if a man is genuinely the primary care giver at home and is actively involved then I could see the 7/7 being suggested. Again, this was NOT the case. A 7/7 split can create issues with children who have two different parents with two different views on homework/study time, two different ways of eating, two different sets of bedtimes, etc. However, because my friend is SO nice she didn't insist the kids stay with her until the divorce was final. I won't go into all the details of their case, because it's not my case to share. I would go into examples of horrible nasty things that have been said or done, but again it's not my case to share. I could go into the other settlements in the decree that are 100% ridiculous, but again it's not my case to share. I also don't want to jeopardize anything. However, I will say that a real man knows when to step up and do what's right for his children. I real man knows that a lengthy court case isn't healthy for the kids and in the end will cost him a whole lot more than it would to do what's right. A real man wouldn't belittle, bully, or manipulate the mother of his children. A real man could stand up and admit she was a good mother and again would do what's right!
"As she has planted, so does she harvest; such is the field of karma." Sir Guru - Having people rally around you and support you both financially and emotionally is the result of good karma. It's the result of the amazing deeds another person has done in their past expecting nothing in return from others. It's amazing how people come forth to help in a time of need when you have done nothing in the past, but be kinds to others. However, I have another quote to share too "Every action of our lives touches on some chord that will vibrate in eternity. ~Edwin Hubbel Chapin" So I encourage you to think about what you are doing in your life today. If you knew that the world would give you back what you are putting forth would you accept your are putting forth your best? If not........rethink what you are doing.
Last night when I got home Mike's dad had stopped by and brought an old picture of Mike to show Emily. Mike chased Emily around the house trying to get the picture from her so she wouldn't share it with the world on facebook. She finally brought the picture to me and I laughed at how adorable he was. I then looked at the picture and told him how similar he looked at this age to the boy I once dated that took his own life. I am sure that sounded odd to him, but he knows how much I love him personally and that this was a long time ago. I then asked him to get down my old trunks from the attic. Since he loves me so much he braved the dirty attic and brought them down.
Emily and I spent hours in my living room floor sorting through my old items from my past. I had my baby blanket, my teddy bear, old pictures, newspaper clippings, drawings from friends, my old phone list (since we didn't have smart phones), posters that hung in my wall, my mums, and so much more. Most of it is falling apart now, but she still enjoyed looking at it all. Then she started flipping through my yearbooks and she had the best laughs at how big our hair was in the 80's and 90's. We read over all the signatures from my friends and I laughed at all the memories I had. She snapped pictures of her friends parents that were in my annuals and sent them via text. Then I pulled out the news clipping of the boy that lost his life. She looked at it and said "he does resemble Mike's picture". She quickly read through the notification about the tragic incident and handed the paper back to me. I then scanned through all the letters his parents sent me encouraging me to carry on and have a fulfilled life. I remembered how hard it was to deal with his loss and how long it took me to feel okay again. I remembered when I finally let go of the heartache that I was standing in the dark over a small stream and I let a bunch of our notes go. I watched them float away and I guess at the time it was my way of watching the pain go with them. I have always encouraged Emily to come to me with any issues she may have. I have also encouraged her to never think someone is just "kidding" about committing suicide and to tell someone ASAP. I made the mistake of waiting. Twenty five years ago today I found out the hard way that you never think someone won't follow through.
I thanked Emily last night. I looked at her and tried to keep myself composed but felt a few tears run down my cheek. I said "Emily there was probably something in my subconscious that realized before I did that it's been 25 years ago and that's the reason I wanted my trunks. However, you turned what could have been a really sad time into something I will always remember fondly. I had the best time looking through all my old stuff and laughing......so thank you". She smiled and said "I really had a great time too!" It was priceless.
Last night Jude went through one of his "hold me mommy" phases again. So this morning when Charlotte got to our house I did "Jude's" voice for her.
Jude: "Charlotte I was not going to let mommy put me down last night. Any time she put me on my futon I would say AHHHHHHHEHHHHHHHHHUUUUUUUUUUUUUU very loudly!" Jude thought that was hilarious and laughed outloud. He was very smiley and very happy this morning. He also smiles so big any time someone says "I love you Jude". He knows what it means and he knows it's a good thing.
His teacher is now coming to our house twice a week. She just loves him so much and we are very lucky to have her. She constantly thanks us for "allowing" her to be in Jude's life. It just astounds me how many people are touched by him. He just has a good soul. So now Jude has his nurses, his therapists, and his grandma coming to the house every week. He is getting lots of attention.
I have an update that Biggy is doing well. He has been having some issues eating, but that's normal for him. He is finicky and any change of scenery makes him lose his appetite for a few days. I was updated this am that his new owner mixed some soft food with his hard food and he gulped it down. She also sent me a picture of him laying on the couch with his new friend the mini schnauzer. I am told if Bigs whines the schnauzer runs to his side. So I think he found a "life partner".
I will update more when I can. I have been VERY busy at work, but that's a great thing. It means people are buying houses and our economy is picking up!
Imade a hard decision last night. One that I am very teary about right now and one I have wrestled with for some time.
I said goodbye to my little Biggy
Bigs is a great dog. He is calm, submissive, and smart. However, his shrill bark would constantly give Jude large seizures or spasms. Which would in turn cause someone to yell at Bigs and then he would take out his frustrations on our floors. I will miss Bigsby sitting by my feet every night. I will miss him swiffering the floor when he wanted scraps that I dropped while cooking. I will miss Bigs sitting at the base of the stairs trying to out maneuver the cat so he could get to his crate. I will miss him thinking my friends and the nurses come just to see him vs the family. I will miss him nipping at Casen's feet when he left because he either didn't want him to go or thought he was protecting me. I will miss him crawling on top of my head when there is a thunderstorm (literally).
Bigs and Emily just never really hit it off so she wasn't very upset last night. I had cried several times the night before so I tried to keep myself calm last night. I had some friends that are huge dog lovers that wanted Bigs. They are actually perfect for him. They are at home during the day and only have 1 other very small older dog. They spoil him rotten so I know they will spoil Bigs too and that's what he needs.
They came to visit to see how Bigsby reacted to them and it was instant love. So I grabbed a big plastic bag and packed up his bed, his blanket, all his clothes, and his mountain of toys..............and then put him in their little crate. I was determined not to cry in front of them or him. However, I kept picturing him waking up the next morning wondering where I was at. I reminded myself that this is best for Bigsby. He won't be yelled at ever again for doing what comes natural to him. He will be loved, spoiled, and cared for.
You were a good dog Bigs...............thanks for loving us.
Saturday was a good day. I took Emily and Mike to meet my cousins family for breakfast. After we exchanged some laughs we parted ways to complete our day. Emily and I went to get her shoes to go with her interview dress for Miss Teen. She picked a pair of funky but cute shoes to go with the darling dress she picked out. I said "I don't think those are normal interview shoes". She replied "well I am not normal and they show off my personality". Well said......I let that subject go. We then went to get her hair done in Dallas which afterwards I professed to her that I would be buying MYSELF some clothes and items in May. She agreed.
Once I got home my husband was frustrated from trying to put together a pottery water feature he has had pictures in his head. Jude was sleeping soundly.........which I found odd because he seems to be sleeping a lot more lately. Once Jude woke up I grabbed him and we sat together on the couch for a long time.
Jude's seizures have increased along with the sleeping. The neurologist cut the new Artane down to once a day. I thought I would see a marked difference this weekend, but I didn't. Mike is not convinced it's the new medication, but I am. Yesterday Jude cried for over an hour, but I think that's because our little dog had given him several seizures due to his barking. However, for the most part Jude is happy. He wants to be held a lot, but he is happy. It's always a mystery with Jude..........wondering if it's just "Jude", medication, or a sickness.
Easter was a good day too. We don't do much at my house in means of a big dinner. My family is a bit scattered around so it's hard to gather everyone together. So I sent Emily with her dad because they do a huge hunt, dinner, etc. Mike and I stayed home and we worked our buns off. I cleaned the entire Emily's Smile Box room and sorted everything into appropriate bins. It looks so much better. I marked all our garage sale items, cleaned my closet, potted plants, Mike cleaned the carpets, I unpacked a bakers rack and pulled it outside for a potting bench. So it was a very productive day.
Jude is having his revaluation for the program he is under in Texas. Due to the cuts to these programs he will be losing some of his benefits. I like to say it's the fact the state thinks Jude has gotten better, but the reality is there have just been governmental based cuts. However, we are still lucky that he qualifies for benefits and help. We don't use all our benefits each year anyway. However many kids I know are losing their benefits all together because they no longer require skilled nursing. Due to Jude's aspiration and other issues he is determined to have a medical need. I am sure I could handle Jude on my own via my nursing degree obtained through osmosis (lol), but I work. We are also VERY lucky Jude gets some nursing on the weekend. We love and trust his nurses and it gives me time to spend with Mike. I think this has been vital to keeping our relationship healthy.
I will leave you with this quote because I feel it's needed. Happiness depends upon ourselves. - Aristotle
