Parent of a terminally ill child

Being a parent of a terminal child is harder than anyone could ever imagine. I still have days that feel so surreal that one day she will no longer be here. I keep thinking that they are wrong that she is going to defy the odds and outlive me. You are often knocked back into reality when things worsen and you are forced to get use to their new normal. Life becomes increasingly harder, you sleep much less than you did before (which is hard to imagine you can sleep any less that you did before with a special needs child), you have small hospital room in your home and they consume 98% of your thoughts. She’s all I think about and she’s all I want to be around. I don’t get sitters to give myself a break I get sitters so that I can give Clint the time that he doesn’t typically get otherwise. I spend 90% of my nights when I get home from work holding her or being with her. I use to run, ride bikes, and train and I have no energy or willingness to give up my time to do any of it. Not only does their life become harder for them but the things that you enjoyed the most have become something of the past. You want to work out and you want to do things for yourself but I’d much rather look back on my life and say that I spent every moment with her that I could rather than beating my marathon time from the year before. You also become aware of how people are to you. People have been amazing and so supportive. We’ve experienced some amazing things and people have given me some incredible memories that I can never thank them enough for. However, you learn that you are ostracized from some conversations because people don’t want to make you feel bad by talking about their circumstances. People assume that because you are going through something unimaginable that you can't share in their joys or their experiences. On the other hand, you have friends that stop being friends with you because the situation is too hard or they don’t like all the attention that your child is getting now. Guess what if having her be normal or not have to go through this and never getting any attention from others then I’d gladly chose that but thankfully you have people who love her and want to give her the best life that she can possibly have. I’m not sorry for that. You also lose the help that you once had because people are too scared or just don’t want to watch a child that comes with all this medical equipment, instructions on when to apply oxygen or when to call 911. It’s a lot and most people don’t want to deal with it or aren’t able to so you lose a lot of support. Thankfully you still have some incredible people that are willing to help out and that love spending time with her and you know without fault they will be there. I have the type of personality that I save all of my emotions for when I’m in private. I have days where I spend a lot of time on the phone with doctors, emailing nurses or texting about Skylar but when I’m at work I try my best to do my job. I might rush home so I can see my child and I might stay up way too late thinking, worrying or crying myself to sleep. I feel like I seem so positive because this whole situation seems so surreal at times. The idea that one day she will not be here does not seem to be real. One thing you should know about her, she likes to keep people on their toes and she likes to do her own thing. She is constantly stumping the doctors and leaving them scratching their heads trying to figure out what could be going on with her. I am still praying that she proves them wrong and they are scratching their heads 20 years from now. You also realize how many people have been touched by your child’s life. I never expected the amount of love and support that we’ve received this past year. I had no idea what was to be expected when we started on her bucket list journey. You also start to feel like some doctors have given up on what to do with your child when they hear the word Hospice. They can’t understand why any medical intervention would need to be done. I am not giving up on my child nor am I deciding that you can stop trying to figure out what might be wrong with her. There will probably come a day when 5-6 appointments a month or sometimes 3-4 in a week are not necessary but right now we are going to continue to fight. She is giving me everything she has so I will give her the same. Your life has a completely different perspective than it used to as well. You find yourself making the same wish when you blow out your birthday candles (yes I still do that), when you see 11:11 or 3:33 on the clock, or when you say your prayers every night. You pray for comfort and for strength but most of all you pray and wish that they would be wrong and that she will life and incredibly long life. I try not to dwell on the idea that she won’t be here one day I just think about the fact that she’s here. That’s easier said than done because you have to grieve a child that is still here. You are making plans and having to make decisions as if they were no longer here and you grieve them. You still find comfort in the fact that they are still here and you can hold them and kiss them and pray that one day your arms will never have to be empty without them. There are no support groups for parents losing their child. Especially single moms who have spent their entire adulthood raising a special needs child alone and having to experience such heartache without another half to lean on. You refuse to go to a support group for parents that have lost children out of fear that you would offend them because they are experiencing a loss so great and their world is shattered and you can try to talk about how you feel but in reality my child is still here. It’s unfair to assume that they could help me process what I’m feeling when they are feeling much deeper than I can imagine at this point. There’s never been a guide on what to do with a special needs child that is severely disabled physically and mentally and there’s especially not one for special needs mothers. Maybe that’s what I need to write. There’s no preparing yourself for this life but there’s no preparing you for when it ends either. You’re world is shattered when you realize that the life that you thought you would have has changed and the child you  dreamt of having is now going to need a lot more love, care, and attention. You realize that your life isn’t over but that this is an implausible blessing. You don’t miss the ideas of what a typical child would do because you have your own accomplishments and things to celebrate. However, what started out to seem as a shattered dream ends with shattered spirits and hearts because the child that you never expected is the child that you can’t live without. The child that changed your entire world is the child that has given you more life and meaning that you can ever imagine. There is no guide or manual to any part of this. You live day by day and some days are much harder than others but you wake up praising the Lord that he has blessed your life and has given you another day with the most precious child in the world.