Mother of a child suffering from CAH – Salt Wasting Deficiency

1 am:

I am awake and thinking. I shouldn’t be awake at all. I should be curled up in my bed, catching what little sleep I am able to get before my 6 week old son wakes me up wanting to eat and needing medicine. And yet, I cannot bring myself to find peace long enough to fall asleep. I cannot shut off the thoughts in my head long enough either. So here I am, blabbering on and on until all the thoughts in my head are in words for everyone to see.

Allow me to begin with my main worry… my son, Arik. He is 6 weeks old and has what is known as Congenital Adrenal Hyperplasia: 21 – hydroxylase deficiency, (Salt Wasting Deficiency). This illness is lifelong, meaning he will always have it. With this disease, comes the need of multiple medications. These medications keep his body where it needs to be. If he misses any of his medications, he can get terribly sick and end up in the hospital… or he dies. So here I am, a new mother, worried about all of this. Also because of the fact that he is taking all of these medicines at certain times during the day, I am unable to work making my husband the only provider financially… (My second worry; we will get to him in another journal.)… I do not have many friends that fully understand what I am going through personally, so I turned to just writing a journal about it. Maybe getting my thoughts out about this may help me in some way. I bottle up my worry, pain, anxiety, and fear, and try my best to give the best life to my baby boy. They say that god only gives you what he believes you can handle, well I feel like I am failing at this mom thing. My son has already been in the hospital twice and I am scared he may end up back there. If I miss his meds, he ends up sick and in the hospital… if he doesn’t get enough in his system, he ends up in the hospital… or he dies… I am not sure how to handle this. I make sure he gets his medicine, but I worry that I will one day wake up from missing an alarm and I will find my son either extremely ill, or I will find out that he passed away from my negligence… I’m scared… I need help… I pray for guidance, I ask friends for advice, I even ask my parents… I seem to get the same answer… Stop Worrying, He will be fine… Can someone tell me something other than “stop worrying”? I feel like now that I have written all of this down and read through it, that someone will just think that I am just whining and complaining, and maybe they are right… Maybe that is all I am doing, but it helps me cope with my worries since everything else I have tried seems hopeless. Oh well…

I believe I have written enough for one night. I am close to tears now, so maybe I can get a little rest. If I cannot, well I guess it will be a very long night for this new mom.

Signing off, Goodnight Everyone.

3 thoughts on “Mother of a child suffering from CAH – Salt Wasting Deficiency”

  1. To have a newborn is not easy all the time, being new at it makes you walk edges you never knew existed. But when you have been gifted with a newborn who is a very special one with an serious illness well it breaks you, time and time again, you feel you’re the only one in the world, you feel alone, you feel nobody understands, and you almost trust the people around you. Yes they comfort you, they say it will be alright, because they don’t know what to say or do.

    If you were neglecting him? Would you give him medication, if you wasn’t worried for him would you stay awake half the night waking looking at him when he slept so pure and helplessly through the night. To be a bad mum you wouldn’t be like this, you’ve been in the hospital with him twice. He’s lucky to have such a mum like you! You’d do everything for him, you watch over him and you want to listen to his breath, you don’t want him to hurt, get more ill or die! Now that TAKES one hell of mum to do exactly that. You’ve read yourself up on this illness, and it’s all new I get it, but you’re hanging in there, YOU know what’s best for your son, because you know your son. You know when something is wrong and you take action. Does that say neglect??? Hell no!

    I know it’s tough, you’re getting tested everyday, and some days you’ll fail. But you’re human, you are learning, holding your head high watching over your little son there, trying to do the best for him. Never ever doubt that.

    I would also suggest a group where people go through the same as you and your son, talk to someone who is in the same potion as you, there you’ll get understanding, guidance and you can cry your eyes out and it would be ok to react the way you are reacting. If there isn’t in your local community try and search for something here on the internet. Writing about it helps too. But if you ever wanna talk I’d be happy to balance your thoughts.

    Good luck best mum! Never quit or give up!

  2. You can worry all you want. That’s what moms do! Welcome to the club. I have 3 kids. Mine are older, in good health, but I worry, worry, worry. I think it’s normal and shows just how much you love and care for your child. I do think a support group for moms in a similar situation is a great idea. I’m sure some veteran moms can offer you comfort and share their tips.

    As the days go by the care for Arik will become routine. It will get easier and as he ages, you’ll have new challenges. You are doing a great job. Your son is lucky to have such a great mom looking out for him.

  3. I grew up with severe asthma, and I mean really severe, the kind that gets you to the emergency room or into an ambulance car every once in a while. My mother refused any common medication except for one emergency treatment: an inhalator that makes you fit go away rather quickly, but has bad side effects if you use it too often (which I had to). She could not believe that there was no cure, dragged me from one charlatan to the other, homeopathy, kinesiology, I had them all. I know she only wanted the best for me, but she horribly misjudged my condition. There is no cure. There is only proper medication. Now that I am an adult, I routinely take one breath of a special inhalator every day and I am free of symptoms or side effects. I can’t imagine how it was possible for me to live the way I did, in constant fear of having forgotten my emergency medicine, often waking up at night TOTALLY unable to catch a breath, falling out of bed and searching frantically through my bag. Today, most of the time I forget that I have this condition at all. Taking my medicine is a routine. I am aware that I will always need it, but that’s ok, I keep a small stockpile at home and at several other places.

    You are a young mom, which sets you in one of the worst emotional conditions possible. I was there too. There is no use telling you not to worry, because that’s what moms do. I can only tell you what helped me, back then when my daughter was born: Time is on your side. It will be harder for you than it could have been, but that’s how things turned out. Every day will bring you closer to when things get better. Just don’t get mislead by people promising you magical cures. Just like me, your son can and will have a normal life.

    I wish you all the best!

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