After you have spent a large part of your time in and out of doctor’s rooms and hospital, things begin to take on a kind of routine.
Have you ever noticed that?
You come to expect that you will see the staff in the ward and the familiar medical professionals who have followed you through.
With any situation, really, where people are thrown together, a comfortable reality evolves.
What happens though, when all of that stops?
When the doctor doesn’t want to see your child for six weeks, when there are no hospital admissions, when all of the contact (your lifeline) is suddenly gone?
Losing the routine that has been yours for the last eighteen months. Losing the people who you have laughed with when things have been good and cried with in the most terrible of times.
People who, in a strange way, you have come to care for because you have been pushed together under circumstance and because your social network no longer comprises of friends, rather it is made up of nurses and a paediatrician.
It’s pretty weird.
Last week we saw the paediatrician for the first time in six weeks.
The first thing he said was that he felt like he hadn’t seen us in ages.
I felt the same way.
I told him; I’m not ready for this big gap.
It’s too long.
Strangely,he agreed.
We haven’t seen the paed medical ward nurses in eight weeks and, to me, that is just plain bizarre. Especially when we were averaging a five day stay every three to four weeks.
Even though we are at the hospital for tests and the IVIG every twenty eight days, we never see the nurses who came to love and care for Ivy like she were their own. Ivy asks me if we will see Pippa and Milly (her two favourite nurses) every time, so I know It is wigging her out as well.
What happens now?
We have to learn to stand on our own two feet, we have to find another new normal. We have to become comfortable with the day stay nurses and learn to live again.
That is what it’s like.
Learning to live again.
There is a kind of grieving process, a letting go of what we know and an acceptance of what will be. Digging in for the long term, settling into the cycle of infusions and getting on with life.
For Ivy that means pre school and being able to go places
For the family, it is being able to rely on me more, trusting there will be less upheaval.
For me…
I don’t know.
I guess, I need to find a new network, get out, be social, *gulp* make friends. Something I have not done for almost two years because when Ivy became very unwell, I had to have her in what the immunologist referred to as ‘enforced isolation’ and that meant me as well.
I lost alot of my friends because they couldn’t understand why I couldn’t go out.
I had to leave the one group of mothers I felt comfortable with.
I had to leave work.
I somehow lost me in this process and now I need to find her again, although I think I am different from who I was before Ivy’s illness took flight.
I’m not really sure where to start. I don’t think any of us do.
As the weeks feather out into months, it seems to be a case of one step in front of the other.
As an infant, they wanted Samantha to come into CF clinic monthly because she was so young. Clinic is normally quarterly. I remember feeling so scared the first time her doctor said, “We’re going to see Samantha back in 2 months.” I thought, Oh, no! What if something happens, and I don’t know how to handle it! I can’t go 2 months without seeing you!! You’re the reason my daughter is doing so well! By the time he said, “We’ll schedule Samantha in 3 months” it was a little easier to handle. And since CF is this weird in and out of healthy and sick, I always feel like I’m in the middle. I don’t really belong with the moms who don’t have to take special precautions, and I don’t belong with the moms who have to change out feeding tubes. It can be very lonely, to be honest. Tears are streaming down my face right now-I don’t know why this has brought up so much emotion. I’m learning, though, that I can relate to both groups of moms at different times in different ways. And God has given me my path which is not the same as anyone else’s…it’s been designed for me. Just take the next indicated step-if I just think about the next thing I need to do, it helps me not be so overwhelmed by what the future holds. Thanks for sharing your heart.
I am certain for every comment left here, there are many, many more parents who understand and have felt what you feel.
Alicia,
Biggest of hugs to you.
It can be so hard when you are stuck in the middle. We are kind of where you are. Things are not quite as normal as they could be but alot better for many many others.
Funnily enough, Ivy is having CF testing on Monday and I am freaking our about that. It’s very nice to meet you.
Barbara – Thank you. You are a sweet soul.
Oh, I identify with this, Tiff! I just about had a panic attack when our ENT told us he didn’t need to see our daughter again until she was 10 unless something came up with her. Good news, but it kinda feels like a safety-net being yanked out from under you.
Sorry I haven’t been by your place — I’ve got sick kiddos at home right now and the day pretty much consists of heavy quilts, warm juice, and Disney movies
I promise I’ll check in eventually!
Michelle,
Hope the cherubs feel better soon. Hang in there.
TiffandIvy – I purposely waited a bit to come back with an afterthought. Your comment calling me sweet, well, that was so nice of you. I don’t like to take up more space here than is really helpful. The parent-to-parent thing is so powerful here.
Anyway, my afterthought was to give the professional’s perspective.
My way of managing the coming and going of relationships through my work is individual to me, and I suspect every other professional must find their own way, too.
I’ve taken it upon myself to advise a few young mothers that not every therapist will become their friend. I recommended they focus on what the therapist does for their child, and that there will likely be many therapists in the life of their child.
I’ve disengaged from several parent-child-me relationships with difficulty and tears – for not wanting to part. I’ve had parents become downright angry with me for making a job change that was in the best interest of my family – taking me away from them and their child.
I have wished for long-term relationships with several families, but not asked because I did not feel it was appropriate.
The judgement call on the professional’s part has a lot to do with their perspective on these relationships. On the philosophical side, I believe relationships begin and end for a reason. I ponder that much.
Barbara,
I agree with you.
From a nursing and midwifery perspective, there is sometimes a need to step back and sometimes you never want to let go. There are some ladies who I have looked after, who I had so much in common with.
Families who become upset – well, I guess that is their way of coping with the grief of losing someone who has meant alot to them. At least, I hope it is for that reason.
I guess when the time comes to move to a different stage of life, there is that process though of letting go, and so it is with the people who have played a large role in it.
For me that is the thing, learning to let go and move onto the next stage of life with Ivy.
Oh Tiff,
Don’t you know that I GET this one to the core of my heart. So well written, so perfectly put. It could have been my very own words.
Transition is hard and scary and leaves you feel as if you’re floundering a bit. I hope that you find your new place, I hope that it starts getting easier every day.