You can only fill the glass of another….if your pitcher is full ( a note to the parents of children with eczema)

Seasons greetings for the new year!!  A new beginning…a new year filled with HOPE

It has been a while since I last put up a post. I have been traveling a bit and have also been a bit tied up with my younger brother’s upcoming wedding later this month. Having said that, I have missed penning down my thoughts since I have come to realise that there is a certain therapeutic value in sharing one’s joys and sorrows with other like minded people. It definitely makes the load one carries a lot lighter.

There are a lot of parents out there like me who are struggling to take care of their child and who are sometimes overwhelmed mentally and physically. And irrespective of whatever the medical problem is, I know only too well how helpless one feels to see your child suffering. But oh what a feeling it is to see one’s child get better and see the innocent smile on her face once again! I was lucky to have been given a second chance with my daughter last year and I do appreciate this gift, a lot of other parents are not as lucky.

So far so good- an update

The good news is that my daughter’s eczema (Atopic Dermatitis in her case, there are different kinds as I have discussed in my earlier posts) has been kept well under control for the past couple of months under the immunosuppressive drug, Cyclosporin. So the influence of oral steroids (prednisolone) has been waning and the sudden spike in her cholesterol levels last month (one of its side effects) has now receded. However, these kind of powerful drugs can usually only be given for a limited period of time and that also under strict monitoring via regular blood tests. Blood tests are thus a regular feature in our house and I have managed to have a gentle mannered phlebotomist who makes the process as painless as possible.

We will have a medical review coming up in a few months time when it will be seen whether the medication can slowly be phased out or another drug has to be introduced, but that’s a worry for another day. Till then I intend to keep trying to figure out if there is another way to help get Aiyana’s eczema under control.

Taking care of oneself

A lot of times, we as parents get so busy taking care of our children, we forget to take care of ourselves. This is especially true for those whose children have chronic health issues. But it is really important that you as a parent (parents are usually the primary caregivers in the case of their children) take care of your own physical and mental health at the same time. This is of course easier said than done and close to impossible in times of crises, but should be definitely taken seriously at most other times. If we have to be our child’s source of constant strength and love during difficult times, it is all the more important not to neglect ourselves.

It doesn’t get easier, you just get better

And I know exactly what I am talking about. My 6 year old daughter was in the ICU for 3 weeks last June out of which the first 2 weeks were critical. There was only one place I wanted to be and that was by her side everyday. My husband was partly in the hospital and partly taking care of our 3 year old son at home and our family and friends were our source of strength and support during that difficult phase. However, I was the one keeping vigil by her bedside every night since I needed to do it for her as well as for myself. I was extremely stressed and upset and hardly got more than a few hours of undisturbed sleep at a time amidst all the flickering lights and constant beeping of the monitors in the ICU. But somehow I kept going night after night with just a few hours of rest the next morning.

I now realise that my regular schedule of exercise in the past few years played a major role in enabling me to continue to be there for my daughter for those 3 weeks without any break. Regular exercise in any form is  a must to build stamina and ensure you are in good health to provide the best care for your loved ones.

The time to relax is when you don’t have time for it

This is true especially in times of crises when there is not even enough time to breathe properly. However, that is precisely the time when you have to remain as calm as humanly possible to make the best possible decisions in the interest of your child and provide the best support possible. The time when our children need us the most is usually the time when a parent is under tremendous stress and reels under the responsibility that comes with being a parent.

When I used to see the small form of my daughter lying in the ICU bed, the weight of the responsibilities of being her mother were the heaviest. I did not have the luxury of breaking down at any point in time. It was only my passion for reading which helped me relax and destress myself for a few minutes at a time each day. I used to read sitting next to her at night just to take my mind of all our problems and uncertainties even if just for a short while. There were of course times when my mind used to be crowded with all the negative possibilities and a feeling of helplessness, but relaxing even for a short while at night helped me prepare myself for the next day. It helped me to cope with the same problems just a wee bit better, but sometimes that itself makes a lot of difference.

Find your own way of relaxing, it is not only worth it but also essential for a caregiver.

I cant promise

 I can’t promise to solve all your problems, but I can promise you won’t have to face them alone

This is my promise to Aiyana and one I know that I will always strive to keep. A lot of times it is not possible for a parent to make our child’s suffering go away, but we can make sure that our children are not alone in their fight against eczema. Eczema differs from a lot of other medical problems in the way it affects a child’s physical appearance, nutrition, lifestyle, sleep and can be triggered by a host of factors like humidity, external irritants like house dust, perfumes, detergents, stress amongst others. This makes it difficult to control this condition in many cases and hence needs much more than just the medicine prescribed by the doctor unlike in other childhood diseases like chicken pox, measles etc.

The process of controlling and improving eczema can be quite labour intensive apart from being disruptive to one’s normal way of life but needs to be done nonetheless. A lot of long term lifestyle changes (including food related ones) may be required apart from a time-consuming skin and bath care routine for the child on a daily basis ( I have discussed both in my earlier posts- “Eczema- a change in lifestyle” and “Bath time! ( And skin care routine for eczema)”). Of course, the hardest part of being a parent is watching a child go through something like this and not being able to fix it for them…and just like me I know you are doing all you can.

“I may not be perfect, but when I look at my children I know that I got something in my life perfectly right” 

How true! Sometimes, in chronic and severe medical conditions like Atopic Dermatitis the condition makes itself blatantly visible. It manifests itself in the form of rashes, thickened and dark skin and in severe cases, weepy patches and lesions. It is easy for a child to become a target of ridicule and taunt like my daughter has been subjected to and it can have a negative effect on a parent as well. But to each of us blessed with a child, we know that our child is perfect in our eyes and will be loved no matter what their physical appearance (on which our society places such an importance).

So I hold my head up high and I am teaching my daughter do the same every day, for the rest of her life. I encourage my daughter to lead a normal life and hold her hands on those days her self-confidence falters.

At the end of the day, love is learning how to take excellent care of yourself so that you can take phenomenal care of the ones you love.

Beauty is not just “skin” deep- helping your child cope with eczema

beautiful-inside-and-out1-

They say “Beauty is only skin deep” and I agree with them. But in most of the cases “they” do not have to cope with eczema. Only someone who is living with eczema day in and day out knows how difficult it is not to wilt under the stares, looks and occasional taunts of other people. I might not know it first hand but I do feel the pain every time my baby tells me a heartbreaking incident of another child (mostly) who teased her or commented on her looks, weight etc. It is very hard for me not to cry in front of her and/or find that person and go charging at him or her and give a piece of my mind. I myself have been blessed with good clear skin and I would give anything to change places with my daughter in this regard.

I do know that however difficult it might for both of us, the best way I can help her is by teaching her to be strong and to be prepared to answer questions from other inquisitive children and people. I also remind her often that we are proud of her and that she is a brave girl. Because, as much as I would like to protect her from all the hardships related to her eczema, I know that I cannot be with her all the time. And a major part of her struggle is not just physical. It is a mental struggle just to accept the reality of this chronic condition as well as to cope with it. Add to this she is just seven years old and you can see what I mean. Thus, a big part of the support is to teach my daughter to live with severe eczema and be happy in spite of it (till the time she grows out of this or we are able to find a way to get rid of it).

I still don’t have the answer to her question ” why did this happen to me and not anyone else?” And perhaps I never will. But what I do tell her is that she is not alone in this and though she might not realise it there are so many other children like her who have severe eczema and other different serious medical problems. But, unlike other medical conditions, eczema makes it difficult to hide the condition due to its physical manifestations. This is one major aspect which makes it so difficult to cope with.

There are moments when my daughter will keep asking me the same questions over and over ” when will my skin get better?” and ” will next year be worse?” ( her terrible experiences with eczema this year and last is the one which prompts this question and has been captured in my earlier posts). I can only reassure her that it will and next year will be better but I am unable to put a timeline to it. I do not want to make empty promises to her but at the same time I need to keep her spirits high (which is easier said than done). I constantly reassure her that all her caregivers including her family and doctors are looking out for her through her medications and other measures. It comforts her to be reminded often that she is not alone in this.  I am sure that those of you who have children with similar chronic conditions would be doing everything 24X7 to keep your child in good spirits. I decided to share some of the things that are working for us (well most of the time).

“Stop scratching” doesn’t help

There a lot of times that her itching increases significantly. I have realised that she simply cannot stop scratching when she sweats a lot or is very stressed or sleepy and saying “don’t scratch” will not help. Luckily, she is a creative child so I have been able to somewhat distract her by helping her do some craft activities, drawing and painting and puzzles at various points in time and reading to her and even singing together. These are things which interest her and help her calm down. Thus she is able to relax mentally and the antihistamines seem to work faster. I have also just started doing yoga with her ( with the help of short videos of yoga meant for children) as another way of controlling her stress and helping her relax. I hope to give you a positive update on this in the future.

A child counselor or psychologist 

I recently took Aiyana to meet a child psychologist as we had been planning for some time. Her doctors and I agreed that it might help her to speak to a third person (especially to a trained professional) since hers is a chronic condition and in light of all the trauma that she has been through in the last couple of years. Lately, she had also been complaining of nightmares with regards to her itching and skin condition (this seems to have stopped in the past week or so). When I took her last week it was heartening to be assured by the psychologist that Aiyana seemed to be a happy, balanced child in spite of all that she has endured in her young life. Still, Aiyana was very happy to have someone in authority listen to her problems (apart from her parents and doctors) and so I will be taking her occasionally for counselling.

You are not the only one

This is one thing I keep repeating for both our sakes. I have to remind her that there are many other children ( and other concerned/stressed parents like us) like her out there even though they may not be part of our friends and family.What  gives her some measure of comfort is to hear the inspiring stories about other people who battle their own demons, handicaps, debilitating conditions and have still managed to live life on their own terms. She especially loves hearing about true, inspiring stories of children with physical disabilities who have succeeded in sports and others with serious medical conditions and yet led happy lives. I am motivated by encouraging stories of mothers who have moved heaven and earth to enable their children suffering from severe eczema live a comfortable and happy life and of some other mothers who have gotten rid of it as well.

Aiyana with her doting uncle

Aiyana with her doting uncle

You’re beautiful inside and out

My darling Aiyana is the sweetest daughter that anyone could ever have and one I could have ever wished for. Her complete hair fall earlier this year has caused her much heartbreak and she still endures teasing from other children from time to time about “looking like a boy“. All those times when she cries her heart out because some child in school has told her she has such bad skin or try to peek under her scarf and tease her about her lack of hair, this is what I tell her. That no matter what one looks like on the outside and no matter how much emphasize is on one’s looks, what matters is that she is a loving, caring child who makes our world a better place to live in.

“When life gives you lemons, make lemonade”

If life gives you lemons make lemonade retro poster

And last but not the least, this is our new-found motto. I have shared the secret of living a happy life (in spite of all the problems) with my daughter – ” just add some sugar” when your life is filled with lemons (I have even managed to find and buy a tshirt for her saying the same thing- she is very happy wearing it!).

We try to look beyond the pain and look at the possibilities as well as all the achievements. This helps us to look at a future filled with hope and a determination to live life by enjoying each and every moment. And if that is not enough, I can always count on loads of hugs and kisses to lessen the pain for my daughter (however momentary it might be).

We laugh and make our very special ” lemonade”  on those days that seem overwhelming.

 I hope you can find a way to make your own with your child as well!

Related posts:

When the going gets tough…(Part 1)

….the tough get going (Part 2)