Are We Crazy?????

[janiedelite]

So I've been pretty stable since coming back from Mayo in February. I was diagnosed with mildy hyperadrenergic POTS resulting from small fiber neuropathy, with slow intestinal motility and possible MCAD. Stable means that I haven't been confined to bed like I was last year, that I sleep about 10-11 hours a night, take an hour or so to get up and moving and during the day I take 3 or 4 breaks to lay down and get blood back up to my brain! I can drive safely short distances most days. I can do housecleaning, accompany my mom to her appointments, go for 1 or 2 short walks most days. I wear compression religiously, push salt and fluids, rest when needed.

We've been married since 3/07 and I'm 35 and hubby is 32. We both want kids. Mayo said it was okay for us to try to conceive. We tried a few months last year, and for the few months since I got back from Mayo without success. I know it might take longer, as I am 35. I'm a nurse (disabled due to POTS), and hubby is a certified special education teacher in our local school district. He's also pursuing his doctorate in order to become an administrator.

We have my parents close by (although mom has cancer, she has at least several years to live and functions well) and his folks are within an hour drive. His sister her hubby are close.

Last weekend we attended a weekend of mandatory training in order to get certified as foster parents and start the adoption process for a child with special needs. (We aren't going to work as foster parents. We just have to get certified in order to adopt from DHS. And a special needs child is any child 5 or older in the DHS foster system who is available for adoption, or any child with medical or psychological needs.) We're thinking of adopting a 5 to 8-year-old girl. The whole process usually takes a good year until the child is placed in our home, so this won't happen overnight!

The main hitch for us is if we get pregnant along the way, we will put the adoption process on hold until I give birth and know how my body will do.

In the meantime, I'm reading lots about special needs kids, adoption issues, and attachment issues due to multiple placements. Raising a kid with POTS is daunting, and I'm thinking that by having an older child I could rest during the day while they're at school and I wouldn't have to do all the physical work entailed with raising an infant. But we'll have the additional stress of parenting a child who underwent terrible abuse or neglect or both.

I've always wanted to adopt, and even dream of having an orphanage... I'm trying to not let POTS take all my dreams away, but am I crazy? Suggestions? Comments?

[firewatcher]

Motherhood is the HARDEST thing that I have ever done in my life. It makes POTS look like a cake-walk. While the rewards are longlasting and incalculable, they are delayed and sometimes appear non-existent. I am not saying don't do it, but don't buy into the "anyone can be a Mommy dream." I always wondered why it looked so easy for other women...it IS easier for other women. They have the energy level and stamina needed for kids.

No, you are not crazy. If you love children that much, then go for it.

[janiedelite]

Thank you, Firewatcher.

I worked as a live-in nanny for 4 children for a few years in my early 20's (pre-POTS) and did a really good job. I remember how I would wake up in the mornings and feel as though I had boundless energy and would take the kids for daily adventures to parks, museums, zoos, etc. Like you said, mothering is harder for people with POTS. I think that one of the tough things will be to adjust my expectations and to be content with what my body allows me to do as a mother.

I also remember how I was so calm under pressure before POTS. Parenting any child can be highly stressful and bring out the worst in us, but this will be even more exaggerated if we take in a child who has been abused or neglected. I don't fall apart under pressure emotionally, I think I'm actually stronger in that arena since getting sick. It's just all the adrenaline and fall-out that my body goes through when I'm under pressure which is so distracting and can be very overwhelming. Sometimes I really don't know if I can do this, but then I just feel mad at this illness and don't want to look back on my life and regret not trying.

I think you all can relate.

[maggie]

Thankful

Before you jump into the process of adopting a special needs child I would suggest you try fostering first. My husband and I fostered children for 10 years, before pots and no one could ever discribe the situations we would be put into. Some of these children were so emotional needy and had such difficult issues that they were dealing with that as a normal parent one would not know how to handle some of these kids. We worked through a private organization and they had medical staff on hand to help us during the struggles, but some children were so hurt it was almost impossible to help. One goes into these situations with such good intentions but until you walk the walk it certainly is difficult. I'm not trying to discourage you, maybe this is a gift you haven't uncovered as of yet, but beware the road is hard. Before our first foster child entered our home I prayed the Lord would give us a child that would start us off on this road on a positive step. He answered our prayers. As the years progressed the cases grew harder and more difficult as we went, learning more each time we would have another child enter our home. Our prayers are with you on this journey because that exactely what it is: a journey.

Maggie

[janiedelite]

Thank you, Maggie. My hubby is willing to work as a foster family. I think it's a good idea. Also, I'll meet with my PCP in a couple weeks, since she manages my POTS and has seen it since the start. I'd have to have her okay in order to move ahead with any of this. I'm interested in her opinion too.

The more I think about your idea, the more it makes sense. Thanks.

[janiedelite]

Okay, I just talked with a social worker about starting work as foster parents. I briefly explained my limitations, mostly how I require rest periods after activity. He was very sympathetic but explained that the kids they work with usually have severe emotional issues and require 24/7 supervision, which wouldn't be possible with my issues. I just don't think this is going to work. I'm trying not to be too depressed. I spoke with hubby about this and suggested we keep saving money with the hope of doing a private adoption in a year if I'm not pregnant by then. He was encouraged by this, and he understands why special needs adoption is probably not going to work out for us right now.

Maybe things will change

[maggie]

Thankful

I'm sorry to see your dreams crumble, it' so hard to give up on things we would like to do in our lives. I'm glad you received your answers sooner then later. Try not to take it too personal. All of us here on this site have had to give up so many activities that others take for granted. I don't know about the others on this site, but as I loose more of my physical abilities I dream more. You might not be able to foster but don't let this stop you from looking to find another area you can contribute to.

Maggie

[janiedelite]

I don't know about the others on this site, but as I loose more of my physical abilities I dream more.

What a great perspective! Thank you.

[MomtoGiuliana]

I know personally how strong desire for a family, for children, can be. It's hard to balance what we can physically do with what we want to do. I chose not to have more children, due to POTS. It's often very painful to me even though I know I made the best decision for my child and myself and my husband.

As firewatcher said, being a parent is highly physically and emotionally demanding. I wouldn't say it makes POTS seem like a cakewalk in my case--only b/c I stopped at one child and b/c my POTS postpartum was so extremely disabling that I was unable to care for my infant without help (whcih could never seem like a cake walk!). But parenting is very hard work and moreso if you are also sick.

I am a volunteer with Big Brothers/Big Sisters. We mentor a 7-year old girl whose mother is disabled and has some other issues. She and my daughter have become good friends, and I enjoy the chance to nurture another child who needs it most desperately.

I hope you are able to realize your dreams, even if they have to modified a little.

[firewatcher]

It is the very nature of Motherhood that you WILL love your child MORE than you love yourself. (Or your husband) There is not just a physical demand on you, but an emotional one that is even harder.

When they are infants, the physical needs are far greater: sleep deprivation, late nights watching a sick child, feedings, and just keeping up with the toddler.

As they grow, the emotional demands become far greater:

-But Mommy, why can't you take me to the zoo? (miles of walking trails and standing/looking at animals)

-But Mommy, why can't we go to Ryan's pool party (90 degree heat, 12 other 8 year olds and other perfectly healthy parents.)

-But Mom, I want to go to Bowling Night, it's a fundraiser for the school ( 150+ 6-12 year olds, their healthy parents, strobe lights and loud music)

-Mom, you ALWAYS have a headache! You just don't want me to have any friends...stomp, stomp, stomp, slam!

Eventually you will cave in to giving your child a "normal" childhood and sacrifice yourself (truly) for them, and you will PAY afterwards!

It doesn't matter how tired you are: dishes won't do themselves, food won't cook itself.

They do not have the life-knowledge to appreciate the difficulty you are going through and won't for many years.

Would I trade my children for my health? No. I love my children, even when they tell me so and so's Mom is better. I have done and will do all that I can for my children, even if I must sacrifice myself to do it.

Is it worth it? Yes, but it hurts...badly

[janiedelite]

Thank you. Hubby and I talked last night because I was feeling guilty about being sick and creating these obstacles (of course, even though I didn't try to get POTS ). He was so sweet and reassuring of his commitment and love to me, in sickness and in health. If God blesses us with a baby naturally, we'll be thankful. But if not, we will be the best aunt and uncle ever and we won't have to save for a college fund!

There's an elementary school right down the road, with plenty of volunteer opportunities to help kids. Thanks for your suggestions to keep looking forward.

[summer]

Hi Thankful,

I rarely get a chance to check out the chit-chat board. Actually, I have a difficult time keeping up with the dysautonomia board! This is my first post over here, but I just had to chime in on this one.

God bless you and your husband for your generous, loving hearts. How wonderful that you want to share your home and your lives with children and possibly even a child with special needs. I just wanted to say that if this is God's plan for you, you can do it. Is it easy? Of course not. Is it worth it? Sooo worth it!!

I have the three best children in the world. One of them has autism. When he was diagnosed at the age of three, I spent a lot of time imagining what difficulties he (and we) would encounter. And we've encountered them all. But the thing I could have NEVER imagined was all the joy he would bring us (and lots of laughter - he has such a unique perspective on EVERYTHING). I just wanted to say that however it is God choses to bring children into your lives, He will give you the strength you need.

Do I ever feel guilty that I am not able to be the Mom that is driving my kids all over town, and having sleepovers every weekend? Sometimes. But one thing I know for sure is that my kids are loved thoroughly and unconditionally - and they know it! They are happy children and are learning many life lessons about being compassionate, and doing their share around the house.

They are also a wonderful way for me to get my mind off myself, and think about things other than POTS. God bless you as you make such important life decisions. Just had to add this because I feel my kids and my hubby are the absolute best part of my life.

Summer

[summer]

I think that one of the tough things will be to adjust my expectations and to be content with what my body allows me to do as a mother.

Had to add... this is key! You are right on. I try to look after the important things, but lots of things are left undone. My kids are happy, but my house is a mess!

Summer

[janiedelite]

Summer, thank you so much for your kind words and encouragement! Wow, three kids and one being autistic! You are a trooper!

I was listening to Dr Laura yesterday as she consolled and advised a caller who was unable to have children (after a miscarraige). She said the only way to get through it is to devote yourself to loving the people currently in your life. For me, that means to practice thankfulness and to be the best POTsy wife I can be to my sweet hubby, a compassionate friend, and an attentive daughter and granddaughter.

Thank you again!

[summer]

Thankful,

You have such a positive attitude. You are right that we must all look for contentment in the life and relationships we have. Sounds like you have lots of love in your life already.

I was also thinking... we have had some of the most wonderful support/respite workers in the life of our son. They have given so much to him and give us a much needed break. There are many ways to be involved in the lives of children who need it. Take care and all the best to you and your husband!

Summer