Thursday, April 30, 2009

I'm not a doctor, but I play one on TV

Over the course of the past year, I have met many parents who have a child with Down syndrome (most of them online). Some found out about their child's diagnosis prenatally, and others found out shortly after the birth, like we did. Yet woven throughout every story is the common thread: Most everyone is glad of the timing of when they found out. I truly think God prepares us all in different ways for this life-changing news.

Those who found out early are grateful that they weren't taken by surprise, that they had "extra" time to deal with the news, and that they were able to bond with their baby early, extra chromosome and all. I personally, having found out about an hour after Benjamin was born, am so, so, so glad that I didn't know beforehand. I was able to enjoy my pregnancy (have I mentioned I *love* being pregnant?), I had a few carefree months before the worry began, and most importantly for me is the fact that I did not fall prey to the Google Syndrome.

All of you (especially moms) know exactly what I am talking about. Your child has three red bumps on her arm, so you Google "red bumps" and ten minutes later, you are convinced that your daughter has Rocky Mountain Spotted Fever. (When in fact it is either an allergic reaction to your new detergent or the remnants of pink marker day at preschool.)

So you can imagine the mental agony that a mom must go through who is told that she is expecting a child with Down syndrome. Because let me tell you, there are few medical complications that are not common with our kiddos. Besides the biggies that we are certain to deal with (cognitive delays, hypotonia (low tone), speech and motor delays), there is a laundry list of "maybes" such as congential heart defects (check), intestinal defects (check), hearing problems, vision problems, feeding issues, skin problems, thyroid problems, leukemia, Alzheimer's disease, epilepsy, and immune deficiencies. And I'm sure I've left some out.

Basically you just don't know. And there's only so much you can tell on an ultrasound. Some heart defects are easily seen, while others are not. Benjamin's weren't. We went to a high-risk doctor and had a level II ultrasound to rule out the possibility of Down syndrome (due to elevated numbers on a blood test), and were told that his heart "looked perfect." Ummm...yeah. Then four months later, here came Baby B with three heart defects, one of them being moderate-to-severe in size.

Had I found out about the DS before B was born, I would have convinced myself that he was going to have every medical problem possible. As it was, we haven't had it that bad. I am *ESPECIALLY* thankful that he has had no feeding issues so far, especially after what I have been through (and am still going through...ugh) with Andrew and his eating.

Many of these medical possibilities may not manifest themselves for months or even years after birth. For that reason, babies and children with Down syndrome go through more tests and see more doctors to try to catch any problems early. Benjamin has his hearing, vision, and thyroid tested every six months to a year. So far, his hearing has been fine. His vision, which was checked early (at four months) b/c of his impending heart surgery, was okay but showed some far-sightedness. The optomestrist said that it might have just been the fact that he was a baby at the time; babies' lenses are very short, so it's hard to detect true vision problems that young. We go back on Monday for another check. I hope it's good news, but part of me thinks it won't be. Still, I can handle glasses. As far as his thyroid, Benjamin's numbers have always been a little hard to get. Around the time of his surgery, his numbers ran high, but the doctors all agreed that it was most likely because of other factors (related to the surgery) and not a true thyroid problem. But I heard back from the doctor's office yesterday after Benjamin's one-year well visit on Monday. His TSH (thyroid-stimulating hormone) was on the high side of normal. (Normal is 0.5 to 7.1 and his was 6.7.) So right now they're going to check it again before the year is out instead of waiting a full year. She said there was no real cause for concern but wanted to make me aware of it.

Great. Now I'm going to worry.

But the blood work I was most relieved to hear was normal was his CBC, or complete blood count. So far, his white blood cells are not elevated, which could mean possible leukemia. Not that we're ever in the clear for anything in life, but it was nice to know that at least for now, that number was normal.

Benjamin's physical therapy continues to go well. He is still not crawling the right way, but is *definitely* mobile and doesn't seem to notice that he's doing it incorrectly. (He sticks one of his legs out to the side instead of putting his knee down.) He is even pulling up to standing on some objects. (His crib and his LeapFrog Learning Table are just about it for now.) Natalie (his PT) thinks that he may need some sort of braces or support shoes in the not-so-distant future to assist him with standing. He doesn't have much of an arch in his feet and tends to lift up his toes and/or turn his feet out when he stands. I have noticed (and this might not be anything) that his legs really seem to bow in right below the knees. But only time will tell if this will be needed, as he continues to bear more weight on his feet and legs.

Benjamin will be starting speech therapy soon, but not for speech per se. (They don't really serve children for actual speech development until about 15 to 18 months around here.) But we are having issues transitioning him from a bottle to a cup, and so our service coordinator contacted the ST and we will have an evaluation in the next couple of weeks in order to start ST once to twice a month to work on this. That's another issue with many children with DS; poor muscle tone in their mouths. So it's harder for him to wrap his lips around a wide sippy cup and suck properly. He will most likely need to be on a straw cup or a honey-bear cup. But the best news is that the ST is a good friend of mine! I have known Heather and her husband DeWayne since we were all in the newlywed class together at church, and now we both have two children! I can't wait to get started.

Truth be told, there is a much, much bigger reason that I am very glad I didn't know about Benjamin's diagnosis before he was born. I have hesitated sharing this on this forum before, but I feel compelled to now. Certain beliefs have been revealed in all their hideousness that have caused us to pretty much sever ties with my husband's family. My MIL (mother-in-law), with whom we have purposefully not shared this blog, has made it very clear (even in her attempts to be vague) her true feelings about people with Down syndrome and other special needs. (So if you know her, which you probably don't, please don't say anything and please don't tell her about my blog. I type all this to be therapeutic because it is a big issue in my life.)

My MIL claims to be a Christian. Attends church regularly. Even has a Christian-based organization to help those with no insurance with medical supplies and equipment.

The days following Benjamin's birth, after we knew, she was in the hospital room with us for a few hours. She must have said three times, "No...he doesn't have it. Those doctors are wrong." Now I do understand that people have different ways of coping with things. Denial is completely normal. Heck, at the time, I wished what she was saying was right. But it obviously wasn't. There was no denying that the doctors were right. So why tell a heart-broken mother that? It wasn't appropriate. I just shrugged it off. Little did I know. Little did I know.

When B was about six months old, my MIL was talking to my husband on the phone and asked how Benjamin was doing and how I was doing. He told her that B was doing fine, and told her some of the updates on his heart surgery recovery. He told her that I was doing okay, that some days were better than others, but we were doing fine, etc. And she said something like, "Well, God knew better than to give me a child like that. I wouldn't be able to handle it." (no kidding) She went on to say, "I think that God is okay when mentally retarted babies are aborted because we are all meant to be perfect like God is."

Um....hello? Seriously? Matthew told me that he really didn't know what to say. He obviously disagreed with her, but you know how people are; they are very set in their ways and you can't convince them of anything. He even told me that he didn't think that she, in her mind, even saw the connection between the hypothetical child in her scenario and our son. Her grandchild.

I was beyond furious. I was spitting mad. But there wasn't much I could do. A few weeks later, while we were driving up to Nashville for our post-op visit with B's heart surgeon, Matthew called her and brought it up in the conversation that Benjamin is our son and that we love him very much, and that he is very much a gift from God. We have learned so much from him and his sweet countenance and gentle spirit were such a blessing to us. She agreed. She didn't say much. I really don't know what she was thinking.

Several months later, after we were home from Benjamin's intestinal surgery, she asked once again how we were doing. Oblivious to the fact that she was setting him up and that he should have said all was roses and lemonade, he was honest and told her that we were doing okay, but that the recovery was kind of long and it was just kind of still hard to deal with. (Incidentally, it was just about after this time that I really made a turn in the road as far as dealing with the diagnosis.) He said something to the effect of things were good, there are ups and downs, but mainly ups. (I later told him that if she ever asks again, just to say, “GREAT! THINGS ARE WONDERFUL! GOD HAS BLESSED US SO MUCH WITH THIS WONDERFUL CHILD, YOUR GRANDSON BENJAMIN. HE IS SUCH A GIFT FROM GOD, JUST AS MUCH A CHILD OF GOD AS ANYONE ELSE ON THE PLANET! PEOPLE WHO DON’T EVEN KNOW THE LORD HAVE SEEN GOD’S GRACE THROUGH HIS SHORT LIFE!”) But I digress…

So she started talking about her Sunday School class (full of a bunch of old, gossipy ladies who are evidently easily swayed). Lately they’d been talking about God’s will as it pertains to babies. And then she had the nerve to continue on her poison beliefs, and how the ladies in her S.S. class now agree and think the same thing. It gets worse than what we had previously thought.

Before what she had the nerve to say was that she was glad that God never gave her a retarted child b/c she couldn’t handle it. That she doesn’t think God looks down upon the abortion of retarted babies b/c they’re not perfect like God is, like we’re all supposed to be. Okay, so as if that wasn’t enough to handle…Take a deep breath, here goes….

She thinks that when problems are found prenatally that show that the baby is going to have issues, that those tests are a way of God’s saying that He wants that baby in heaven with Him. So it is our responsibility to make that happen. (Note: she never mentioned the words abortion OR Down syndrome OR Benjamin…how very convenient for her conscience.) AND if we don’t make that happen, then we are interfering with God’s will. And so God washes His hands of us and says, “Okay, you didn’t send the child home to be with Me, so I’m going to give you want you get.” And thus, we have hard times with said child. I looked at him and said, “*Please* tell me you said something!” (Let me note that I was not nearly as mad this time as I was last time…more like relieved in a way.) He said, “Oh, yes! I said, ‘I don’t agree with that at all! That’s like saying that when someone is sick, it’s God’s way of calling that person to heaven, so no one should take any medicine!’” That went right over her head. He said a few other things, too, but I can’t remember what they were.

Later in the conversation, she started back up about it. So Matthew just fakingly-politely ended the conversation. Basically it wouldn’t really do any good to fight her on this. It is beyond her weird hang-up. It’s like her passion lately. She’s spreading it like propaganda and by telling it all to Matthew, it’s like she’s trying to get him to believe it. Or to make him see that WE did wrong by not finding out about Benjamin’s DS prenatally and ABORTING HIM! After we talked about it, Matthew sighed and said, “I’m just through. I cannot excuse this kind of behavior, this line of thinking, nor this disregard for our son.”

So we decided not to invite them to either boy's birthday party. I did not want her there watching my precious son eat his birthday cake, all the while thinking I should have aborted him. She called a week or so after Andrew's birthday and talked to Matthew. She never mentioned the party. She did ask how Andrew likes being three now. So she knows. But she has not called since Benjamin's birthday. Part of me thinks she's relieved. Relieved not to have to deal with him. Glad she isn't being asked to be around him. And you know what? She doesn't deserve to be around him.

So that (in a very, very large nutshell) is the real reason why I am glad I did not find out about Benjamin's Down syndrome prenatally. Because my MIL most likely would have tried to convince me to abort him.

I don't know what this means for the future. We have not told them not to call or visit, though they're not in good health and live an hour away. I don't know how Christmas will be, when we usually see them and exchange really crappy gifts. I for one don't want to buy her a thing, and I don't want any of her stuff given to my children. Yes, it's sad that my children will only have one set of grandparents, but it is not worth it to have them around that poison. I will not allow them to be. I still don't know what to say one day soon when Andrew asks why Daddy doesn't have a mommy and a daddy. But to me, I have to protect my family from that.


Verna said...

Someone once told me that God chooses special people to give special kids to. They know how to love these special kids when some people would never understand or love them.

You are special! God entrusted you with B and his special needs.
He is very sweet and special don't let your MIL tell you any different!

Anna said...

Wow. I am just speechless. I can't believe any human being could say that God created something in order for someone to abort it if it didn't meet "average" standards. If that were so, I shouldn't be here.

I think that people with differences are given those things (like my PKU, for example, although that's not a close comparison to Down's) because they have a special purpose. I think that God gave us things like this in order to bless others or make a difference. Even if it is just to one person. I know that I have pku for a reason. I don't take it lightly, and it honestly makes me feel honored. I am honored that God felt like I was important enough to be set apart.

My heart breaks for you, B, Andrew, and Matthew. But it also breaks for MIL, because it will be too late before she realizes what she has done.

It's a good thing that your mom is "Namma" enough for two "Nammas!"

Lora Leigh said...

Well, if what she says is true then I suppose we should have all been aborted...I have yet to meet a "perfect" person! Good grief!

I don't blame you at all for keeping her away. If she is that warped then she would fill Andrew's head full of garbage too!

I thought my MIL was bad...but tonight I will thank God that she isn't THAT bad. I will also pray for your strength to deal with this and that your MIL can realize what she is throwing away before it's too late.

Shannon said...

oh, i think i am just as mad now, as i was the first time i heard this!!!

big hugs to you and matthew for making a hard decision, but one that is right for your family. and for being honest with your emotions and feelings.

when we decide to take the adventure into parenthood, we don't have any idea what lies ahead. we don't know how our child will turn out. and yes, there is prenantal testing for some things, but not everything. (i wonder what your mil views on autism are?)

angela, thank you so much for sharing your thoughts and experiences with us... i enjoy reading your blog!!!

Mommy to those Special Ks said...

Wow. Just wow. My husband's parents are not in our life either because his mother refused to acknowledge Kennedy. She would send gifts for the other kids but not for her, and Frank finally said enough was enough and they are now missing out on SUCH a blessing... but to say what your MIL said? And it sounds like her whole Sunday School class believes that way?! WOW!!! What a beautiful thing they are missing out on! I'm so sorry. Try not to let it bog you down.

Amber said...

I was wondering how the birthdays went over.

I'd be glad to be a relative of B's.

Aside from that, you know how I feel about MIL.

Anonymous said...

Yeah, like Amber, you know how I feel about your MIL.

Thanks for the update! Aren't you glad no big family drama impeded on the celebration of the boy's birthdays? I am.

Anonymous said...

I am sorry to read this...I have a son with a medical condition and I have found when I am faced with this sort of ignorance, it only makes me feel more blessed and makes me want to advocate and educate that much more. I feel lucky for what I have learned from his syndrome. This must be so difficult for your husband...I am truly sorry. Your little boy is adorable....and as perfect as any of us!

Casey said...

I feel blessed just reading your blog. She should feel that a piece of Heaven flew right down and sat down in front of her.

I hate this. I really do.

P.S. My Ilyssa thinks B is cute. She pointed to his picture and said 'Pretty baby!'

Branton Family said...

I have begun this post now three times. There are no words. . .just that I am really sorry. It's times like these I just can't wait for heaven. :)

lesliemarie said...

I am speechless. And you are a better person than me, because I would have told her where to stick her "beliefs" in words that should probably never be repeated. :) Your family is precious, and I'm so proud of you for letting B change you into who you are now.

JILL said...

I read this story when you posted it elsewhere, so I knew of this cancer in your lives. What I like seeing here is that you were able to write it out for yourself, therapeutically.

I am behind you and Matthew in your decision. Add me to the Cyber Aunt list for your sweet blessings!

Loved the WW pics yesterday!!!!!!!

Heather said...

How anyone, let alone a grandmother, could look at those pictures from yesterday and feel anything but love for that boy is beyond me.

((hugs)) You know where I think she should go.

Stephanie said...

You know I don't like this at all.
Makes me 'fightin' mad'!

You can respond in His love. I KNOW you can.

I hope that doesn't make you want to punch ME out.
I love you, Angela. I am so sorry.

My name is Sarah said...

Hi Angela, this is Joyce. Your MIL's name is not Elaine is it? Oh wait no, that's my MIL. A short while ago one of the bloggers sent me an email and asked me if I would do anything different. My response was that I would not spend as much energy on trying to convert my in-laws into being supporters. I so wanted them to not be so negative and support their only son and his children, but they just never got past the Sarah not being "perfect." I allowed it to drain me of energy and not always feel totally fulfilled on birthdays, holidays and celebrations because they were never there. Then finally I realized they were the ones missing out. And I moved on. My oldest son has it all figured out and my youngest son has only met them twice. He is twelve so he doesn't even know them. For him we have two families in the area with really great grandparents and they have "adopted" him as their grandson, which is a beautiful solution. Good luck. I so know how tough this is.

Anonymous said...

Oh Angela, this has made me even more sick to my stomach than when you told us about this before..You and Matthew have handled it with such grace (as always). If she was my MIL, I would have flown off the handle. Her logic is obviously so off. Even someone with the slightest bit of intelligence would see her theory makes no sense, and is in no way biblical.
Like PP said, you know what I think about her. B is so lucky to have you as parents

Fredericks Family said...

OK, why is it not saying my name??? It's Melissa:)

Adrienne said...

Wow-that is unbelievable. I guess all I can say is I feel sorry for your MIL in that she is missing out on her grandchildren now and believe me if that were my MIL I would not allow her to even see my children. I know this has to be hard for you and espcially your husband though. Maybe eventually she will come to see differently- but it's not going to come from her SS class! I just don't know what I would do in this situation.

The Soldatke family said...

Oh my goodness {hand over my mouth with my mouth hanging WIDE open} Your MIL has no idea that there is an angel in your midst! I once was told by a dear friend of mine that children with special needs are just that, angels. Think of all the struggles that we go through that our children will not. They don't know how to hate, or judge people, they only know love. The are as close to angels as you can get on this earth!

And I wonder what her stance is on people that have injuries later in that they aren't "perfect". How far would she go? What about people with dyslexia, or OCD, or....I could go on and on and on. Last time I checked NONE of us are perfect. We are a sinful world...and since when did the bible tell us to take the issue of life into our own hands??? When did he give us the authority to take life away??? UM NOWHERE...because we're not supposed to. EVERY life is precious.. and meaningful..and planned by God. For a GREAT purpose. Crazyness. Okay, I'll get off my soap box now. I'm so sorry for you! and your husband handled it beautifully...but how hard would that be??

Gisela said...

Angela...I am just dumbfounded by your husband's mother. EVERY child is one of God's blessings. I am sorry you have had to been exposed to her poison, but I'm glad you are sheilding your children. They don't deserve to hear things like that.

Katie J said...

I am so sorry that your MIL has been such a pill for you! Your son is beautiful because he was created by God and God knew him even when he unformed and in your womb. We are indeed a sick society when we think we might know the thoughts and actions of our most high God- his ways are so above ours! I am sorry your MIL is missing out on the blessing of being part of her very-loving daughter-in-law's family. You are so right to expect that your children would be treated as the true treasures they are! And kudos to your husband- not many men could stand up to their own mother's concerning their beliefs and put first their family's protection. No wonder God chose you guys as Benjamin's parents!!!

Anonymous said...

Having a nasty mil myself, I feel for you. Thankfully, my dh has chosen to not speak to his family anymore. It is hard for him, at times, but necessary for our family.

How sad that your mil is missing out on the most precious blessings of her family: her grandchildren. The joy of your family just shines through your blog. There is plenty of love for Benjamin in your life.

On another note, we had to use the honey bear sippy for Ayla. It was perfect and she no longer needs it!

Astrid said...

Wow. I am so sorry. This is unbelievable. I've heard all sorts of misinterpretations of the bible but this tops it all. Maybe this is just her(very messed up) way of dealing with having a special needs child in her family.
I'm so glad Benjamin has you guys as parents and not someone like her. He is precious and you guys are great parents. I think you're making a wise choice distancing yourselves at least for the time being. Maybe God will bring her around. Pray for her. I will pray for all of you.

Mary Jo said...

Yeah... you know how I feel about your MIL. And how I feel about you and your family! You and Matthew have handled this amazingly and continue to be such an inspiration to others. But if you ever change your mind you have a group of hot headed gals ready to go kick some MIL butt. But seriously, she is missing such a gift. She brings new meaning to the world delusional. HUGS to you - MJ