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It’s almost 6:00 in the morning and I’ve barely gotten a solid 2 hours of sleep. No, I wasn’t up late working or scrolling through Facebook or on the phone catching up with an old friend. This has actually become a regular thing in our house and believe me, if I knew a way to keep it from happening… I would!
You see, my husband and I are raising a special/high needs child. While there isn’t anything wrong with our daughter developmentally, she has come into this world with a few physical challenges that we just were not prepared for. Then again, are you ever?
The “E” Word
Our two year old smart, sassy, and lively little girl has eczema. Yes, eczema. After using the phrase “special needs” in reference to a child with eczema, many people just don’t understand. But I assume that is because they have either never dealt with the disease themselves, or have never had to care for a child who has it. Can I really blame them though? On tv you generally see a person with a few small dry patches of skin who uses some miracle cream, lotion, or emollient and then in the next frame all is well. No more dry patches, no side effects from the medications, and they are able to run, walk, or ride happily into the sunset.
That has been far from the truth in our case. In a previous post “Our Kids, Allergies, FPIES, and Eczema”, I wrote a little bit about some of the challenges we have faced as a family with children who have been dealing with these struggles during their short time on this Earth, especially our young daughter. The truth is, it has’t gotten better. Her eczema has at times actually gotten worse, as have the long sleepless nights. It’s as though the newborn phase that is only supposed to last a few short months, is instead going on for years. We were warned that this may end up being the case, and were hopefully optimistic that it wouldn’t be, but it has been and may continue on for a while longer.
No One Ever
Yes, it’s true. You can clearly see the dry patches of skin on her arms and legs, and the scratch marks, scabs, and dark spots that come with them. However, it’s everything that people don’t get a chance to see that make raising a child like our baby girl so challenging.
No one ever sees the blood stained sheets and pillow cases. No one ever sees the trips to the pediatrician, and the specialists. No one ever hears the whimpers, cries, and screams at night when your child just can’t settle down, or the sound their recently trimmed nails STILL make as your baby claws at their skin. No one ever sees you waking up over and over again at night trying to find something that will console your over tired itchy baby who just wants some relief. No one sees you sitting there trying to figure out if the side effects of the medications are worth a few hours of sleep because this happens to be a night where NOTHING else is working. No one ever sees the endless amount of money you spend on things to manage your child’s eczema and make them more comfortable; even if it’s just a little bit. No one else understands why it’s JUST- SO-DARN-HARD for you to get up on time (since you just went to bed an hour or two ago) and leave the house on any given day before 10:00 a.m., or why you can’t just get up and rush out of the door like everyone else because you have to prepare and pack special food for your little one since they can’t eat everything and everywhere like everyone else. No, no one ever really sees all of what happens behind the scenes.
Although some will see the missed appointments, and your dark circles around the eyes because you’ve witnessed one too many sunrises after sleepless nights, there will not be many who will notice the full extent that all of the stress has taken on you physically and emotionally. Most of all, however, no one else will ever be able to see all of the prayers you’ve said and tears you have shed because you feel that somehow, somewhere down the line you failed your child. Don’t get me wrong. I know it’s not my fault. I really do. But that doesn’t mean I don’t wish every single day that I could make all that’s wrong and hurtful just go away. Doesn’t every parent?
You Aren’t Alone
Don’t worry, this isn’t an invitation to a pity party. In fact, it’s quite the opposite. This actually started off as a venting session that I am hoping has turned into a piece of insight for some, and words of encouragement for others.
Believe me…I know that there are other childhood diseases out there that are much much worse than what we are dealing with over here in the Pugh home. I know too, that there are children with heartbreakingly more severe cases of eczema than what our little one has and we are extremely grateful that Baby Girl’s case isn’t worse than it is. But, I also know that there are thousands of parents out there like me and Danny who at least just once, would like to know that they aren’t alone; that someone else can relate to all of this and knows what they’re going through. So, if you just so happen to be one of them…here are my last two little cents that I have to contribute:
- Realize and acknowledge your limitations and those of your family.- Only you and your family know exactly what you are able to handle on any given day. That is when you have to go with your gut and proceed accordingly. Unfortunately, sometimes this may mean turning down invitations to do things or go places if it’s just going to be too stressful for you or your little one. Remember, stress can trigger symptoms in addition to food or environmental factors. We’ve witnessed this first hand.
- It’s ok to ask for help.- I’m sitting here typing these words thinking to myself that I need to take my own advice. Why is this so hard? We become so great at saying everything is fine when it’s not, that sometimes even those in our inner circle can’t tell when we’re barely treading water and trying our hardest not to drown.
- Allow yourself to feel frustrated.- I know you love your child, and I’m sure they know you love them too. That doesn’t mean however, that you won’t experience extreme feelings of frustration about the circumstances from time to time (or night after night). And you know what? That is perfectly normal…and it-is-o-k.
- Communicate with your spouse.- If they are an involved parent, don’t forget that all of this affects them too. Openly discuss how you are feeling with each other. Most importantly, be honest about it. Pent up feelings only lead to more pent up frustration and that just leads to disaster.
- Talk with your other children about what’s going on.- Maybe your other child doesn’t understand why their sibling seems to get so much extra attention from Mom and Dad. It’s only natural. Dig deep to find a bit of additional energy and do something to make them feel special too. A little extra lovin’ can go a long way towards encouraging feelings of positivity and combating feelings of resentment.
- Try your hardest not to say “Don’t scratch!”- I know, I know…I make this mistake ALL of the time, but think about it… I’m pretty sure that if their skin wasn’t burning and itching , they wouldn’t be scratching in the first place. At the advice of a friend who has struggled with eczema since childhood, speak compassionately with your child and help them express what they may be feeling. Use comforting words in an understanding tone. Sometimes all you can do is rub their skin for them, hold them tight, and let them know that you love them.
- Focus on helping someone else with their problems instead of dwelling on your own, or find some sort of creative outlet. – It doesn’t have to be a competition. We have to stop playing the game of…”Well, my issues are worse than your issues.” and “That’s too bad, BUT, my situation is worse than your situation because…” My parents have always said that it is hard to sit around feeling sorry for yourself and dwell on your own problems when you are too busy helping someone else with theirs. You can also find something constructive to do with your time instead of allowing all that is going wrong in your world to take over your life. Let me tell you, creative outlets are awesome! So, the next time your little one wakes up about an hour or two after sending them to bed and you find yourself watching the hours roll by…Don’t worry, you’re not alone. Just remember to take it one sunrise at a time.