Finding My Way

lost-116664_640I have really been struggling lately about this period in my life. A brief recap of my story for those who don’t know who I am. My 19-year-old daughter was diagnosed four years ago with two congenital heart defects, a rare heart condition that was caused by those heart defects not being diagnosed. The rare heart condition led to pulmonary arterial hypertension (PAH/PH) which is basically high pressure in the pulmonary (lung) arteries that causes them to close up. Both the heart condition and her PAH are incurable and irreversible. Her congenital heart defects could be corrected but not with her PAH. She does take a lot of medication one of which is an infusion pump she wears that 24/7. She is also on oxygen 24/7. She just finished her first year doing part-time online classes working toward a bachelor’s in fine arts majoring in illustration.

Here is where I am trying to find my way.. Nicole is 19 years old now and she will be 20 in September and no longer a teenager. I am her power of attorney and health care surrogate. Nicole is on disability so I handle her finances also. She is an adult now and while I will always be her mom I would like to be a friend (or more so) as she gets older. The problem I am having is finding a balance between what is doing too much for her and not allowing her to have more independence. I do not usually get involved with anything that has to do with her classes other than help with applying for financial aid and keeping up to date on her grades etc.

My next door neighbor passed away at the end of May and I was very close to him. The memorial service was this week. I went with another neighbor and we were talking and she said it is different parenting an adult child. Something I never really thought about. I have a friend who believes that while you live under my roof you do what I say and I do not disagree with this but there are boundaries to it. Her daughter is 18 years old and they still tell her what time she has to be in bed asleep or she will get grounded. I do not agree with this and feel this is more on the controlling side. But this is just my opinion and none of my business.

Nicole’s friend (actually they consider themselves dating) who lives in Maine is coming for a 10-day visit the first week of July. Nicole and Shayne haven’t seen each other since last July but they are chatting, messaging, texting whenever he isn’t working. Nicole and Shayne are going to stay at a hotel for six days together.

Now, I have a huge problem with this but she is 19 years old and the adage “if you are living under my roof you do as I say” pops to mind but I just don’t feel that I can do this. Maybe it is because and probably most of it is because she is sick. I do worry about her taking full control of her medical issues without me there to help her. She thinks this will be a good experience for her.

I worry because I sometimes think that Shayne doesn’t understand the severity of her illness. I am freaked out about it. What if something goes wrong? What if Nicole doesn’t keep track of time and her pump runs out etc.? Nicole’s counselor says that I shouldn’t worry about it because there’s nothing I can do to change it except forbid her to go which I believe in my heart would damage our relationship. In February when this was planned I told her that I would only allow this if she could show me she could be responsible with taking her medicine etc. without me telling her to. I must say she has done well.

I don’t know how I will get through this. Nicole and I have never been separated more than overnight. I know that I have to come to terms with this. I have started a list of projects that I want to get done while she is gone and I will have to keep super busy. The problem is that I put so much of myself into homeschooling and taking care of Nicole’s medical issues that I have lost myself. I have to find out who I am and what I feel God is leading me to do. It probably won’t be much longer before Nicole will decide to take over all of her medical care as long as her health remains stable.

I probably haven’t made much sense and for that I’m sorry. My thoughts are so jumbled and I just feel so lost some days. I don’t literally have an empty nest but feel like I do in a lot of ways.

Avatar of Jane

About Jane

My name is Jane and I care for my 19 year old daughter, Nicole, who has several congenital heart defects, Eisenmenger's syndrome and pulmonary hypertension which is a rare, life-threatening, incurable and progressive lung disease that causes blood pressure within the pulmonary arteries to become higher than normal. She also has several other health issues that are not as severe. I have two blogs one is "A Day in the Life" which chronicles Nicole's diagnosis and our everyday life. My other blog is "Let's Get Organized" which chronicles my struggle to get the clutter out of my house and get organized.

7 thoughts on “Finding My Way

  1. Heather

    Having not spent more than a night apart isn’t just true for you, it is true for her as well and this is a big moment for her. She is stepping into adulthood (with their trip, with her medication management, all of it) in a big way right now, and I would guess that it is exciting and scary for her.

    I agree that it would be great if Shanye had a deep understanding of the risks and rituals of Nicole’s illness and management of it. But Nicole does, and that is enough.

    I know that you have written about all the parts of adulthood you’ve been afraid that Nicole will miss, so even though it is causing some anxiety, I’d like to offer that you can frame this as something she isn’t going to miss. They have planned a visit, they are taking a trip together, she gets to have the rush of being out on the arm of someone she cares about – it is a great moment.

    You get a few days to take care of yourself, and I would suggest that any medication alarms you’ve got set on your phone (or whatever) get turned off, she’ll take care of it.

    Good luck.

    Reply
    • Avatar of JaneJane Post author

      Hi Heather:

      Thank you so much for your response. I have every faith that Nicole can do this. She has so much potential in many areas of her life but she just doesn’t put forth the effort. I hope that this will give her the confidence that she needs to realize that she can do whatever she wants to do with her life …. illness and all.

      Hugs:o)
      Jane

      Reply
  2. Avatar of MeghanMeghan

    Hi Jane. While your concerns are all valid, I think it’s time to start letting go. Try to view this as a trial run. She will only be gone a few days. She is an adult and eventually she will have to stand on her own two feet. As much as you would both like, you will not be around forever. She has to learn how to take care of herself. This will be a good time to test out if she is really ready for that. I don’t have any health issue, but I had a very over-protective mother. I really resented the fact that she never trusted me to do anything or make decisions for myself. She raised me to be smart, and careful, and to make good choices. I had to be able to prove to her that I could make them on my own. It took her a long time, but she finally had to let go. And I turned out to be a responsible adult who can take care of herself. I know it’s difficult, but please try to give your daughter that same opportunity. Let her make you proud. Trust that you raised her well enough to make the right and responsible choices for her health. Good luck to you both.

    Reply
    • Avatar of JaneJane Post author

      Hi Meghan:

      Thank you for your reply. I agree with what you are saying but Nicole isn’t very responsible especially when she has distractions. This doesn’t mean that I don’t have faith in her decisions or that she can’t do it because I do but she just doesn’t show this.

      My mom was the opposite and from 15 years old until I moved out at 21 years old I basically did what I wanted and came and went as I pleased and believe me I made some lousy choices which I know I wouldn’t have made if my mom had disciplined me.

      My daughter makes me proud with her artist ability and with the way she has handled having such a devastating illness and not being a “normal” teenager because of her health issues.

      Hugs:o)
      Jane

      Reply
      • Meghan

        I understand where you’re coming from. Sadly, children have to make their own mistakes. I certainly didn’t make only good choices throughout my life, but I did the best I could. And most importantly, I was able to learn and grow from all the mistakes I made. My mom tried really hard to keep me from making “her” mistakes, but if I don’t make any, how am I supposed to learn? That’s just part of becoming an adult.
        Good luck dealing with this very difficult situation. The transition from child to adult is a difficult one for all involved. I hope that your daughter can find her way and make you proud.

        Reply
  3. EllysGdaughter

    Dear Jane, I truly hear your heart and know how difficult this “letting go” is for you. Your counselor is giving good advice. I too worried about the “arrangements” my boys have made visiting with their girlfriends and recently was relieved to hear that my wishes had come true in regard to his purity despite what it looked like. That being said,,, I had to release that angst that my children/young men would not fall into the pitfalls that can swallow up our beautiful sons and daughters! Recognizing that these offspring do have to take control and manage themselves is so hard for us moms who have invested sooo much teaching and care! My son only has 1 kidney and I had to deal with his issues since he was 2 weeks old when we found out. Leaving this in God’s care is the best thing I did and I encourage you to take those steps – I agree with you, I did not/do not micromanage my adult sons who live or have lived with us. I encourage communication but not manipulate them – I have a great relationship/bond with LivingRoomSon! I know you can too! (((Hugs to you and Nicole))).

    Reply
  4. Avatar of SueSue

    Jane – this may be hard, but think of it this way – it is something that is hard for EVERY parent. It is a piece of NORMAL for you. I try to think about things with Mackenzie that way…things are obviously different for us as parents of chronically ill children, so embracing those little slices of normalcy is good at some level. I imagine that every parent goes through this with their 18, 19, 20 year old children. Of course you have the added worry of her managing her medical issues, but the fact that she has taken seriously your calls for her to prove herself (and that she knows this will be something that shows her as responsible as well) is good news.
    I worry so much about being overprotective with Mackenzie that I think I sometimes err on the side of maybe not being protective enough (who knows though?). I think you’ve found a good balance…and this trip proves that. I love that you have projects scheduled while she is gone. Do all those things you never get a chance to do…and keep your phone on and close. I’m sure you will worry constantly, but hopefully she will keep in touch and update you often. :) I am happy she is getting this chance.
    Hugs!

    Reply

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