Since I was 15 years old (yes I know that's young), I have known that my purpose in life was to be a mother. Now 35, I still have no children. I have a great job, house, husband of 15 years, and a great support system. I spoil everyone's children, and I am everyone's mother. I had all but given up on having children until recently when doctors seem to have made some progress in regulating my hormone levels. I still want to be a mother so badly, but there are three factors that lead me to believe that having a child would be very selfish on my part:
1. Autoimmune disorders are genetic and I love my potential children too much to watch them go through this.
2. I'm in treatment, but my PsA is chronic and I just don't know how involved or energetic a mother I will be able to be.
3. I can't imagine how much pain I will be in during my pregnancy since I won't be able to take any of my medications.
My doctor wants to add Methotrexate to my Humira, but before that happens, I feel like I need to decide once and for all to either do whatever I can to have a child or have my tubes tied and let my dream of being a mother die. Even though I have had fertility issues for the last 15 years, there was still hope that it could happen one day, but having my tubes tied or having a hysterectomy is permanent....and final.
Does anyone have any opinions? If you have kids and they have inherited your disease, would you do it all over again if you knew it would happen?
I'm new to this forum, and I appreciate all of your input.
Oh, Alexa, I am literally weeping for you. I don't know what to say ... this disease is hard enough without having to confront a dilemma like yours. But you won't be the only one here who's grappling with an issue like this.
I am childless by choice, but that decision was pre-PsA. I'm retired now, but I was a teacher. My PsA reared its (ugly) head in the last 10 years of my career. At the time we made the decision not to have children, I didn't think I could do my best professionally as well as giving my own children as much as they would have deserved. Do I have regrets? Of course I do. I don't think I had enough faith in my ability to balance profession and family. But these days I also wonder how it would have been for us as a family if I'd had kids and if the PsA had become active while they were still young. And that makes me shudder.
When people ask whether I have kids, I say I do -- everybody else's kids! And I think that is also a very important role to play. As someone who nurtures, coddles, spoils and teaches children (whether your own or everybody else's) you play a very important and ongoing role in their lives. I know that there are young people whose lives are better because I was there at the right time, and I did the right thing. And I'm content with that, even though I have regrets. But are there very many big life decisions that don't come with a regret -- or the possibility of a regret -- attached?
Alexa, I'm glad you've found us on this forum, but I'm sorry you've joined the club.
I never had to face the mother issue, because I was I dad, but no one wanted kids more than I. It didn't happen. Both my wife and I were teachers (I moved on she retired after 30 years in Middle school)
Anyway my problems started pretty young (mid 30's) We finally gave up on the fertility thing.
We have 9 kids now. (Actually just one at home a grandaughter with multiple handicaps, the others grew up - some take longer than others. The grandaughter we are raising came from a single dad (mom died) who did repeated deployments.) I understand the bearing children thing (as much as any man can) but I also understand diapers, potty training, chasing toddlers etc. (I came from a VERY traditional Irish Catholic Family in a neighborhood of the same) Joy doesn't necessarily come comes from S***ty diapars (trust me on this one) but babies are pretty cool despite the work.
There are litterally thousands of 3-4-5-6 -10 years olds out there who need families. These kids aere almost all self service (as far as physical labor is concerned) No lifting, toting, carrying, etc. They can pick up after themselves(if you expect it) and can even be some help..... (I'm not suggesting you are getting live in servants, they don't do laundry, cook or homework without some work on your part) And if you are really into potty training have no fears, my wife has trained all 12 of our grandkids. It takes a week.
Thing is we had a wonderful experience, super kids, who grew up to be super adults (for the most part) They weren't quite that super to start with, but kids ar far more resiliant than you think and get squared around pretty quuikly. The point is if you don't think you can handle infants, you don't have to forgo children..... If you get 'em a little older most of the real physical work is done and you can start out immediately spending every weekend at the soccer field eating sack lunches and counting the minutes till you can hit the tub and and your bed and don't worry you won';t be the only mom or dad at the field to have portable generator to operate the heating pad. (actually they make a super charged saline cordless pad that works really well take several)
I don't mean to sound trite, nobody should have to face your decision. It was made for my wife and I, we just had to accept it (not that it was easy.) But one thing is for sure just reading your post, you have more mother in you than most who have given birth to children. Please consider using that gift somehow.
I'm 22 now but was diagnosed when I was 18 with PsA... I am a trained Ballet dancer so this condition has just finished my career, (the emotional pain is still to hard to deal with)!
I know I'm still young but ever since my early teens I have wanted to be a mother one day... Now I just feel totally confused and have no idea what to do. My boyfriend and I are always talking about our future and it just breaks my heart to think we would never have children !
I also only just joined this group, so see this conversation has already made me realise I'm not alone!
Wow TNT....that is truly inspirational, and a very touching story of giving joy to those who need it most. I commend you and your wife for sharing that joy with those children who need it the most. SO very many children out there need adoptive parents, or foster parents for that matter, and it seems that you have taken that upon yourselves to do that throughout your lives....for this, I commend you!
tntlamb said:
I never had to face the mother issue, because I was I dad, but no one wanted kids more than I. It didn't happen. Both my wife and I were teachers (I moved on she retired after 30 years in Middle school)
Anyway my problems started pretty young (mid 30's) We finally gave up on the fertility thing.
We have 9 kids now. (Actually just one at home a grandaughter with multiple handicaps, the others grew up - some take longer than others. The grandaughter we are raising came from a single dad (mom died) who did repeated deployments.) I understand the bearing children thing (as much as any man can) but I also understand diapers, potty training, chasing toddlers etc. (I came from a VERY traditional Irish Catholic Family in a neighborhood of the same) Joy doesn't necessarily come comes from S***ty diapars (trust me on this one) but babies are pretty cool despite the work.
There are litterally thousands of 3-4-5-6 -10 years olds out there who need families. These kids aere almost all self service (as far as physical labor is concerned) No lifting, toting, carrying, etc. They can pick up after themselves(if you expect it) and can even be some help..... (I'm not suggesting you are getting live in servants, they don't do laundry, cook or homework without some work on your part) And if you are really into potty training have no fears, my wife has trained all 12 of our grandkids. It takes a week.
Thing is we had a wonderful experience, super kids, who grew up to be super adults (for the most part) They weren't quite that super to start with, but kids ar far more resiliant than you think and get squared around pretty quuikly. The point is if you don't think you can handle infants, you don't have to forgo children..... If you get 'em a little older most of the real physical work is done and you can start out immediately spending every weekend at the soccer field eating sack lunches and counting the minutes till you can hit the tub and and your bed and don't worry you won';t be the only mom or dad at the field to have portable generator to operate the heating pad. (actually they make a super charged saline cordless pad that works really well take several)
I don't mean to sound trite, nobody should have to face your decision. It was made for my wife and I, we just had to accept it (not that it was easy.) But one thing is for sure just reading your post, you have more mother in you than most who have given birth to children. Please consider using that gift somehow.
You're not alone Sarah, everyone here has gone through similar situations. Maybe not to the same extent but this desease certainly affects us all. Welcome to the site.
Sarah said:
Hello Everyone !!
I'm 22 now but was diagnosed when I was 18 with PsA... I am a trained Ballet dancer so this condition has just finished my career, (the emotional pain is still to hard to deal with)!
I know I'm still young but ever since my early teens I have wanted to be a mother one day... Now I just feel totally confused and have no idea what to do. My boyfriend and I are always talking about our future and it just breaks my heart to think we would never have children !
I also only just joined this group, so see this conversation has already made me realise I'm not alone!
To reply to the original question of this story....
Yes I would.
I am fortunate that I had my kids before my desease and I am also sad that I can not participate with them the way I expect a father to. I'm sure that the stress they put on me is not helping my condition in any postive way but the bottom line is I love my kids and wouldn't want things any different.
*Sorry, the HTML editor didn't work well, I tried to change the size of the "Yes I would" text but failed*
My kids are still young (5 and 7) and it upsets me that I can't do as much with them as I'd like to. I especially worry that I've passed this onto them (I was only recently diagnosed). That being said, I can't imagine my life without them. They're incredibly empathetic and will help me when I ask. They work hard and give the most therapeutic snuggles. On the days after I take my methotrexate, when I'm laid out flat and essentially sleep life away, I am thankful to have a great husband who is also an amazing father.
I grew up always thinking I wouldn't have kids as a result of being in a very abusive situation, however I enjoy being a mom and it is one of the greatest joys my life has these days.
I am a mum of 4 young kids and only recently diagnosed. I also teach 4 days a week and my husband works away a lot. It is tough and some days by 8am I wonder how I am going to get through the day, but I just focus on each task or interaction I have with my kids or the kids at work and try not to focus on the pain. I thank god everyday that he granted me four beautiful kids. I do worrythat I have passed it on. My doctor reassured me that because we know i have the hlab27 gene we can monitor them carefully and diagnose them early - which seems to be the key. I do still struggle with this, but my kids are my life and I wouldn't swap having them for anything. Whether naturally or by adopting, don't cheat yourself the chance of being a mum. Even though you wont be able to do all the physical stuff with them, you will give them so much more in other ways. Kids are resiliant and understanding, by 8yo and 6yo have both stepped up and help heaps more since my diagnosis. My 3yo and 16mth old don't know any different. I believe you will make a fantastic mother. Good luck with the decision.
Hello: I have two children and with each pregnancy the PSA got worse. I personally do not regret having my kids. I had several miscarriages.
My husband and I were also on the adoption list where we live. We just ended up with genetic children before adopted children. I still would consider ( if I ever get out of this flare) adopting kids but no more genetic children for me.
It is too hard on my body. I think you need to really halve an honest heart to heart with your spouse/ significant other and yor doctors. To answer the first issue; the way I see it; there are no guaranties
that it will be passed on but no guaranties it won’t. Can’t help there. The second; as a mother to two young kids; yeah ig’s hard at times. But, it is do able. You just may have to rearrange your
thoughts on what active with you kids means. I rented scooters last summer do I could go to the zoo with my kids. We took a wheelchair where ever we went, but I was there and participated in it all.
The third query, you mag have to go off youg meds but there are safe methods to control or alleviate pain while pregnant.
But, like TNT said there are lots of pretty awesome kids put there just waiting for you and your Husband. My cousin’s husband can not have children- has no sperm at all! But, they have three beautiful kids and
they are their kids in every way except genetic. In fact they always hear how much so and so takes after my cousin or her husband. On of my good friends has adoptive kids and they are. Amazing. My best friend
Has RA, Type 1 diabetes ( has since she was 8), survived breast cancer, asthma and thyroid issues and has two genetic daughters. Both girls are in their 20’s and are some of the most compassionate and caring,self reliant loving, giving smart
beautiful young women out there in today’s world.
If you feel you are meant to be a Mom then be one. Just take it one step at a time and follow your heart.
Honest communication with your husband and openness to options will go a long way.
So in answer to your title of your post I would do it again,. For you only you know what’s right, your kids are your kids no matter how they get to you.
Thank you everyone for sharing your stories and for the advice. It gives me hope that you all were able to find a way to still be amazing parents, even with this horrible disease. I had no hope yesterday, and today I feel like there are so many possibilities! I know no matter what road I take it won't be easy, but I refuse to let this disease force me into a life of regret.
I'm a mom of five homeschooled kids and take care of 1-5 other children four days a week. I was diagnosed with PsA last year, so had no idea I had it (or thyroid issues, or celiac) before having kids. I actually felt the healthiest and most energetic I ever have in life when pregnant.
There are days when my pain is bad and my energy levels non-existent. These days teach my kids patience and compassion. Perhaps the best way for me to describe to you my thoughts on parenting with a disability is to urge you to read my blog post on the matter: http://rannygahoots.blogspot.com/2012/03/seeing-hat.html
Would I have had my kids? Definitely. I refuse to live in a state of fear - if I was worried about what genetic disorder I could give my kids, I wouldn't have had biological children - there are so many possibilities of things that we could pass down to our kids that if avoiding illness is a reason to not have kids, no one should have kids. ;) I would be a completely different person today if I'd not had each one of my kids. That said, and as others have mentioned, motherhood comes in all shapes and sizes. Foster parenting and adoption are both wonderful ways to be a parent.
I have 2 children and was just recently dx'd with PsA. I would not do anything differently. I homeschool, and hubby travels alot now. My loveable kids are not easy. The 10 year old has ADHD, the 13 year old has Asperger's Syndrome, type-1 diabetes, sleep disorder, emotional issues, and a disability in the area of written language. If I did not have these kids (who are my best supporters btw) I would not have a reason to get up in the morning. Some days the stress and fatigue from being an around-the-clock disembodied pancreas, teacher, and nurse to them is unbelievable, but the good days make it all worthwhile. Some days, the only nurturing support I get is when my boys pile on the couch with me and my 2 pug dogs jump on too and I get the best cuddles ever. Hubby is still in denial, but he sees the kids supporting me and will hopefully follow suit someday. (Hubs is an undiagnosed Aspergers). We also just moved to a different state, so again, without my kiddos, I'd be so lost. If it helps, I've heard stories of PsA going into remission during pregnancy. I think, if it is meant to be, it will happen for you.
DMaraJade ... My 13 year old has Asperger's and up until this past year, had huge difficulties writing (although he reads years beyond his grade level). In the past year he's taken a fan fiction class and fell in love with it and worked VERY hard on writing. He now takes a Three Minute Fiction class and writes for fun. It's an amazing turnaround! My 9 year old has undiagnosed joint issues (we're thinking possible PsA and definite gluten sensitivity) and other kids have multiple food allergies. We babysit two kids with food issues as well. The kids are definitely my reason for getting out of bed in the morning. My four-year-old's freezing feet on my back helps as well. ;)
Thanks for the encouraging story re: your son's writing efforts. I hope to find my son's "hot button" soon. I'm glad to hear from you. I am a new fan of your blog. A homeschooling friend of mine with fibro, and other dx's recommended it to me when I consulted her about how she gets through her day with homeschooling. We definitely need to keep our senses of humor throughout this junk. Whenever I feel down, I check your blog. I do feel alone in this. I try to keep much to myself in front of hubby. He does not deal well with illness of any kind, and I often feel guilty for seemingly "inconveniencing" him by feeling unwell. I was limping last night and he asked me, "why are you limping?" I just said, "I don't know...it just hurts." I almost think he thinks I'm making this up. I don't know how he'd think this. I've never been a hypochondriac sort, and have always been very driven, physically active, and fiercly independent (aka I don't know how to ask for help), and that is how he likes it. I never took afternoon naps before in my life, now they seem to be a necessity and I dread that he'll find out. I feel as though I'm living a double life. He is very suspicious of the dx and says, "this came on kind of sudden didn't it?" Well, yeah kinda - but I've had issues for months and did not see a dr. until Fall. Even then, no one knew what I had, if anything. Therefore, for me, it was not all that sudden, except for this flare up which came on almost overnight. I guess I can't blame his incredulity too much. He does not trust dr.s much (and quite frankly, neither do I).
I am so sorry about your 9 year old. I pray that it is just growing pains or allergy related and will sort itself soon! We had an RA scare with my oldest a few years back (before I knew I had anything). RA runs on my husband'd side (his aunt, and a first cousin), so I was relieved that my son's tests came back negative and that he has not had another issue with swelling joints. Turns out that he is Extremely reactive to any and all insect bites though. We carried an epi pen for the past few years just in case. No one on my side has RA, PsA, or type 1 diabetes - go figure! My mother died at 46 of lymphoma though and I wonder if she might have had PsA, but passed away before it was more obvious.
Anyway, sorry to ramble....I'm just so glad to have people with like minds and who understand. Thanks for posting.
We have raised 2 with aspegers and have one on the spectrum now (also "blind" and some pretty significant motor problems) Once you establish a "new normal" with these kids just as you establish a "new normal" with this disease life becomes pretty cool..... I don't think I have ever had more laughs or delight from any child than these. Their logic is just plain funny (and sadly makes a lot more sense than you may think.) Just be thankful your kids hot buttons are not telling time.... Do have any concept of just how hard it is to make every clock in the house to work in synch???? Just don't compare your kids 9or your disease) to any one else or allow them to do the same
One of the aspy kids is a judge now. You know how they love RULES. If you are ever in SW Kansas be careful.... (actually she is youth court and wonderful at her job)
DMaraJade ... my 9 year old has been cleared by a rheumy for RA, but has been having joint problems since she was 2 or 3. She does have chronic ehrlichiosis, which doesn't help, but also doesn't explain all her symptoms. Also, I think it's difficult for anyone not living with an "invisible illness" to understand what we go through moment by moment and the extreme exhaustion we feel.
tntlamb ... LOL about the clocks. I have OCD and it drives me nuts that none of our clocks are in sync. My aspie child is bad with numbers/telling time on a "regular" clock (although his math skills are improving), and ALWAYS comments about what time it is on each clock in our house whenever I ask the time.
I'm not sure bad with numbers is a bad thing.... Maybe you can direct (yeah right) your aspie kid towards cleaning bathrooms or vacuuming. Numbers may not be a good thing. For example if you take all the pages out of a coloring book (and its a 25 page book) you now have 25 coloring books, if you cut those pages into fourths you have a hundred coloring books and cut those into 8 pieces you have..... and pretty soon (thankfully) the pieces are too small to cut into more coloring books... (its great for self soothing but what a mess.. Of course if you are going to color then the box 24 crayons can become 48 the 96 then,,,,
Seriously - try the vacuuming and bathroom cleaning LOL
My joints started in when I finished nursing my last child. I was 41. I was not fully diagnosed for 11 more years. My body spent from 34 to 41 pregnant, mourning, pregnant, nursing, pregnant, nursing, pregnant, nursing, arthritis. My youngest daughter was diagnosed with epilepsy when she was 5. My older daughter was diagnosed last year with juvenile diabetes. Would I have had them if I knew of their crazy gene pool? Yes, even though my 12, 13, & almost 16 yr. old children are undoubtedly going to put me in the home, I'm grateful for them. I'm even grateful for my first son who would have been 18 this fall if he had survived birth. The world, my husband and I are better because of them. I tell my kids,"Everyone has something, whether you see it or not. Remember that when you are feeling sorry for yourself." (I do hope they bring me chocolate when they visit me in the home though.)
And remember they are LIKLEY to pick the home too..... So be nice.
MsCoylie said:
My joints started in when I finished nursing my last child. I was 41. I was not fully diagnosed for 11 more years. My body spent from 34 to 41 pregnant, mourning, pregnant, nursing, pregnant, nursing, pregnant, nursing, arthritis. My youngest daughter was diagnosed with epilepsy when she was 5. My older daughter was diagnosed last year with juvenile diabetes. Would I have had them if I knew of their crazy gene pool? Yes, even though my 12, 13, & almost 16 yr. old children are undoubtedly going to put me in the home, I'm grateful for them. I'm even grateful for my first son who would have been 18 this fall if he had survived birth. The world, my husband and I are better because of them. I tell my kids,"Everyone has something, whether you see it or not. Remember that when you are feeling sorry for yourself." (I do hope they bring me chocolate when they visit me in the home though.)