I wanted to write this blog today and be honest about my feelings but I want to make sure it's not offensive and my words are structured right. If they aren't make note that hurting your feelings is not my intention. I also thought it might help someone that is going through something similar who wants to explain to others how to provide the best support. I hear repeatedly "How can I help you?". When you have a major crisis people crave to make you feel better. Sometimes they aren't sure how to help or try to help and it does nothing more but add additional stress. So I thought outlining some ways people have helped me would be beneficial. These ideas are only regarding my situation and my personal emotions and in no way reflect how others may feel in a similar situation.
1. Please don't tell me you are praying for a miracle and for Jude to be healed. I believe the miracle itself is Jude's life and all he has done to help others. I am a realist and I know what the outcome will be regarding Jude's situation. God has provided Mike and I peace and has made his presence known. So we simply provide Jude the best care possible and lots of love. Also other standard sayings can be taxing like it's God's Will or God won't give you more than you can handle. I am pretty sure I surpassed my ability to handle a long time ago despite what you see. I had a long time friend call me yesterday at the office regarding her insurance. She said "I want you to know I pray everyday Jude is not in pain". I told her what a perfect thing to say!
2. With that being said don't worry so much about talking to me. I understand people make mistakes and are not sure what to say about the situation at hand. I know you are sorry. I wouldn't want you to understand what we are going through and I know you care very much. I understand you get flustered. Also know that my emotions are all over the place. One minute I am happy, the next annoyed, the next angry, and even the next sad. I had another friend tell me "Hey I want you to know that I understand you have a lot going on. If you are bitchy, angry, or snap at me I do not ever take it personal. Feel free to vent at me". Again..........what a perfect thing to say and just out of the blue. She gets it.
3. Include me in your everyday conversations about your life and even gripe to me if you want to. Don't stop yourself and worry about what you are saying. I hear "Oh my word I don't know why I am even complaining". Although I am very happy you found a new appreciation for your circumstance due to Jude I don't want you to worry about including me in your life. We all have struggles and everyone's struggles and situations are important not just mine.
4. Please take the time to understand just how serious Jude's situation is. Taking Jude anywhere is a task. He requires oxygen, suctioning, and so much more. Also I don't have a nurse from 5-10pm.
5. As much as I know you love your oils, drinks, and other products........hearing they might help Jude doesn't help me. It's not that I am not open to using them but more than likely I have already tried. Also, again.......his situation is extremely serious. If Jude were in the hospital he would most likely be in ICU but as the doctor said "we cannot live in ICU". Although know I am grateful for the offers.
6. I am glad therapy helped your child I truly am and I am so happy they will be with us for a long time. Unfortunately, my child had a stroke and to put him in a chair and force him to hold his head up would result in his death. He has zero tone in the mid section and zero neck control. He has been evaluated many times regarding this situation.
7. Food for our family helps SO much. After working all day and caring from him from 5-10 I have little time. Just please understand my brain is mush and I will and DO forget to give dishes back. If you don't drop food in a plastic container then just come to my door, barge in, and take it back...lol!! I will NOT be offended :). You can even call me a few bad names for forgetting to return your dish.
8. If you do drop off food, gift certificates, or have friends help you do this then know I am so very thankful. I was raised in the South and believe in thank you's or thank you notes however as thankful as I am I am also forgetful and overwhelmed. Texting me asking me if I have thanked someone adds stress on my plate and makes me feel terrible. However please know I have it on my list and I promise I will do so and until that time know I love and appreciate you more than words can express.
9. Talk to me about Jude. I want to talk to him! I want to tell you what's going on and I want to hear how he has touched your life. It's a blessing to me.
10. Come see me! It's hard for us special needs moms of seriously ill children to get out. When we do get out it's generally with our family completing errands or spending time together. Don't worry about specific plans. Just shoot me a text around 5 and say "Hey I know you are home.....is it ok I swing by?". It would make my day. I want you to see Jude! I want you to understand. If seeing him so sick is hard on you then I understand but if you want to come by........come on. An invitation is not needed and honestly I get so busy I forget to invite people.
11. I get so many texts saying people feel "useless" I get it. I feel useless sometimes too in this situation so don't beat yourself up. No one knows what to do when a baby is so sick. So don't feel bad. If you want just swing by. Nurse Charlotte let's people in to see Jude pretty regular and we are there in the evening (The amazing Charlotte.......she needs an award I tell you)! So don't feel useless. This is not regarding us but for helping others that may be in a similar situation. The biggest help for me personally has been help with everyday chores. An amazing friend hired someone to clean our house. My best friend comes over and just starts unloading my dishwasher without asking permission. She also helps put stuff up, cooks, and helps with Jude the best she can. Those types of things really helped and I bet they would help others too.
12. Telling me you aren't sure what you will do when Jude passes or that you aren't sure if you can come to a service doesn't help me. This is one comment I almost didn't list because it's so personal but I have heard it from more than one person. I have no idea what I will do when and if I lose my son but I know that if I can end up handling it as his mother then you can.
13. I don't know about others in my situation but having people recognize what's important to me really means a lot. It gives us distraction and something to work towards. The stroke walk is a reflection of Jude's life that Emily put together. Having people brush it off hurts. We make a full day out of the event so just showing up to say Jude matters means a lot! Also, asking about Emily's pageant that she is working so hard on makes our day! A co-worker asked today if she can attend and it literally made my entire morning!!! So if you are worried about what to say just bring up life in general, Emily, Jude, our garden, or with Mike anything football (ha).
14. Sometimes just having someone sit next to me and be there without any words is awesome too.
15. Know that I love hearing about your children. Of course it hurts knowing Jude cannot run and play or participate in holidays, but that doesn't mean I don't love your pictures or conversations.
16. Keep things positive! Please don't judge me just listen.........just listen without judgement. I have irrational fears especially about Emily so don't judge.
17. Be patient with me.
18. Don't be offended if I don't call you when something serious happens. Sometimes my mind is so consumed in worry that I call the first person that comes to mind. I then leave it to them to spread the word.
19. Understand this has taken a physical and emotional toll on me. I am not the same person I was prior to Jude's amazing birth and his amazing fight. I wouldn't want to be the same person I was before because I have grown so much as an individual.
20. Be thankful! I like to hear that you are thankful for your healthy children and normal life. I like to hear that because of Jude you have learned to love, heal, have compassion, and be amazed by your children. It makes me happy.
That's about it. I hope this helps and I hope there is no part of it that is offensive. I thought I should speak out because I have a lot of people around me that get confused and worried. Just know that just having your support is plenty!