Saturday, after having donuts in honor of our bookends' birthdays (Michaela, our oldest, turned 15, and Keturah, our youngest, turned one), Eon suddenly started crying and grabbing his belly while rolling around in obvious pain. We tried everything to calm him and to discover what the problem was, to no avail.
After a half hour of this, we called the doctor on call and left a message for the nurse. Before she returned our call, he calmed somewhat. Then, while he was laying on our bed, his eyes half-way closed, his eyes started flitting from side to side. I called his name and he didn't respond. When I called him louder, his eyes opened wider and stilled, but didn't focus. Then they half closed and flitted some more. The whole thing probably lasted 30 seconds or so.
When the nurse called and I explained what happened, she sent us to the ER. Eon was completely exhausted by then and didn't even move when Shawn buckled him into the van. Pulling into the ER parking lot, I thought he looked pale and I couldn't get him to wake up. I shook his leg and patted him and called his name loudly. Nothing. Freaked out, I pulled into the nearest parking spot, yanked him from his car seat and took off running.
Halfway to the door he said, "Momma. Down!" After that, he acted totally normal. He was diagnosed with an ear infection. I tried to hold him down for a CT scan. That was fun. They were able to get enough to rule out hydrocephalus and a brain tumor, anyway.
We were instructed to have our pediatrician order an EEG and follow-up with a pediatric neurologist. We have an appointment with our ped tomorrow morning.
Honestly, I'm a little stressed about it all. I was very afraid on the way to the ER.
Also, I'm in a lot of physical pain. I hurt my back dashing into the hospital with a 30 pound bundle of low muscle tone. I just recently recovered from a back injury that happened over 3 months ago. I have some thoughts about this new injury that I haven't sorted out, yet. I'll keep you posted.
For now, please pray for my boy.
Monday, November 14, 2011
Saturday, October 22, 2011
Random pics
Just thought I'd share some recent cuteness. This kid is such a perfect part of our family! The first one is at the pumpkin patch. Eon's not real sure he likes the goats. Maybe because the turkey just pecked at him?
Brotherly love. Or would this be "smotherly love"? He really does love his baby sister. Most of the time, she loves him back.
Can't resist showing off some KJ cuteness. She is really quite adorable. :)
Bye! (This is the look we usually get before he takes off like a shot toward the nearest busy street. Thank you to his PT for spending all those hours teaching him how to run. Really.)
All the siblings after a long afternoon searching for the perfect pumpkin.
Monday, October 17, 2011
Changes
Recently, Shawn and I made the decision to switch roles on a more permanent basis. Meaning, I am now working full-time and he is staying home and schooling the kids. You can read more about all of that on my other blog. What it means for this one is that adoption may not be out of reach anymore.
I'm scared.
It's one thing to have noble ideals; it's a whole 'nother ball of wax to walk them out, or even to take the first step. When it was just a distant dream, I thought and prayed about it all the time. Now that it could actually happen, I find myself avoiding the conversation with God and with my husband. I'm afraid of what they might say...positively or negatively.
The what ifs are looming large:
What if we commit to a child and then can't raise the money? What if our friends think we're presumptuous to ask for help? What if we're not organized enough to pull off the mountain of paperwork this would require? What if we don't pass our home study? What if our oldest never gets on board and it rips our family apart? What if the child has undisclosed medical issues we can't handle? What if he has autism? What if we never come to love him as our own? What if something happens to one of us and the other is left to do this alone? What if our biological kids resent us for this? What if they feel burdened instead of blessed?
The hows are close behind:
How on earth can we handle another child, when we're so often exasperated by the ones we have? How will we cope with the additional noise when it's overwhelming as is? How can we possibly afford this? How will we have time to fundraise when we can't even find the time to make Buddy Walk t-shirts? How can we take time out to bond with one child, while still meeting the needs of seven?
All of those questions are overshadowed by one more:
How can I not obey when God has so clearly directed?
How, indeed.
Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done. Proverbs 24:11-12 (NLT)
I'm scared.
It's one thing to have noble ideals; it's a whole 'nother ball of wax to walk them out, or even to take the first step. When it was just a distant dream, I thought and prayed about it all the time. Now that it could actually happen, I find myself avoiding the conversation with God and with my husband. I'm afraid of what they might say...positively or negatively.
The what ifs are looming large:
What if we commit to a child and then can't raise the money? What if our friends think we're presumptuous to ask for help? What if we're not organized enough to pull off the mountain of paperwork this would require? What if we don't pass our home study? What if our oldest never gets on board and it rips our family apart? What if the child has undisclosed medical issues we can't handle? What if he has autism? What if we never come to love him as our own? What if something happens to one of us and the other is left to do this alone? What if our biological kids resent us for this? What if they feel burdened instead of blessed?
The hows are close behind:
How on earth can we handle another child, when we're so often exasperated by the ones we have? How will we cope with the additional noise when it's overwhelming as is? How can we possibly afford this? How will we have time to fundraise when we can't even find the time to make Buddy Walk t-shirts? How can we take time out to bond with one child, while still meeting the needs of seven?
All of those questions are overshadowed by one more:
How can I not obey when God has so clearly directed?
How, indeed.
Rescue those who are unjustly sentenced to death; don't stand back and let them die. Don't try to avoid responsibility by saying you didn't know about it. For God knows all hearts, and he sees you. He keeps watch over your soul, and he knows you knew! And he will judge all people according to what they have done. Proverbs 24:11-12 (NLT)
Sunday, October 2, 2011
The Monster in my Mind
I have long encouraged women waiting for amnio results to get educated. I know from experience that, unless you are already holding your sweet baby, Down syndrome can become a monster in your mind.
What I didn't realize is that it can become that monster no matter how educated you are.
I've been working full-time for the first time in years. Lately, I've worried about Eon, his future, and his delays more than I ever have.
In trying to figure out why, I realized that I haven't spent much time with him. When I walk in the door, he enthusiastically says, "Hiiiiii!" and then hugs me. He follows me upstairs where his baby sister is waiting to nurse. I sit on the bed to nurse her and he climbs up there, too. After hearing me chide him to be, "Gentle!" or, "Don't sit on her!" too many times, he wanders off to do his own thing. By the time I'm done nursing, I have another hundred things to do and Eon's busy with something else.
Everyone else in the family comes to me when they want attention (repeatedly. :) Eon doesn't come back.
I finally realized that I need to seek him out to spend time with him. The more time I spend with him, the less worried I am about Down syndrome. Eon's just Eon...perfect the way he is. No monsters here.
What I didn't realize is that it can become that monster no matter how educated you are.
I've been working full-time for the first time in years. Lately, I've worried about Eon, his future, and his delays more than I ever have.
In trying to figure out why, I realized that I haven't spent much time with him. When I walk in the door, he enthusiastically says, "Hiiiiii!" and then hugs me. He follows me upstairs where his baby sister is waiting to nurse. I sit on the bed to nurse her and he climbs up there, too. After hearing me chide him to be, "Gentle!" or, "Don't sit on her!" too many times, he wanders off to do his own thing. By the time I'm done nursing, I have another hundred things to do and Eon's busy with something else.
Everyone else in the family comes to me when they want attention (repeatedly. :) Eon doesn't come back.
I finally realized that I need to seek him out to spend time with him. The more time I spend with him, the less worried I am about Down syndrome. Eon's just Eon...perfect the way he is. No monsters here.
Wednesday, September 14, 2011
Out of Left Field.
Ever have a smooth day when all of the sudden, out of left field, comes something you were completely unprepared for?
We had one of those rare days where we weren't completely swamped with patients and could actually leave the building for a real lunch break, today. Most of us took advantage of that fact.
As it often does, conversation turned to marriage and family, with the single gals fielding questions about marriage and the married gals fielding questions about children. Only 2 of us in the group actually have children. We weren't fielding questions at all. ;)
The conversation took a turn and left me feeling as if I'd been sucker-punched.
One of the single gals declared, "I just want to have a child before I'm 35." She was asked, "Why 35?" and my stomach started to churn a bit.
I knew what was coming.
"No offense, Tara, but I don't want a Down's baby."
Rationally, I understand where she's coming from. She's young and is lacking the experience to see that life is not so easily controlled. She has no children and doesn't yet understand that all children have special needs. She doesn't have the spiritual wisdom to know that children are a gift, not a right, no matter how many chromosomes they sport.
Emotionally, I was a bit undone. I know what she said, but I heard, "I don't want a child like yours. He's not good enough. I will avoid one like him at all costs." My momma bear instincts were rising up and I'm afraid I was rather snarky in my response.
"You do know," I said pointedly, "that 80% of babies with Down syndrome are born to women under the age of 35, right?" She did not. The rest of the conversation is a little fuzzy as I tried to get control of my emotions.
Eon is not a mistake. He isn't a tragic accident. He is not a statistic to be avoided, or worse, a problem to be terminated. He was born in the image of an Almighty God who chose for him to be here. He is a gift. I am blessed to be his mom!
Honestly, it is harder (in some ways) to parent a child with Down syndrome. I'm sure even more complications will arise with age.
But, I wonder...how many difficulties are a true result of the extra 21st chromosome, and how many are simply a result of our culture? If ignorance, discrimination, self-absorption, and a general sense of entitlement were not part of our societal norm, would it be easier to raise a child with special needs? I think it would.
My life would be easier if I didn't feel like I had to defend my child's very right to exist. If I didn't feel like I had to prove to everyone how very worthy he is of acceptance, I could relax and enjoy him. My life would be cake if I didn't have to counteract basic ignorance of Down syndrome that I encounter almost daily (Ex, this week alone: Ds is caused by vaccines, only women over 35 have babies with Ds, "they're all so happy," "most of them can't talk," "you can teach them to read?", etc.).
The only frustration I have currently that is actually related to an extra copy of the 21st chromosome, is that Eon can't yet verbally communicate with us and I am certain that he one day will. (He's only 2 1/2.)
I wish that she could truly see how this child has my heart. How he has enriched my life in ways the "typical" children cannot. How he embraces life and expects us to do the same. How he is so very much like his typical peers and his differences only enhance him; they do not define him.
She really doesn't know what she's missing.
We had one of those rare days where we weren't completely swamped with patients and could actually leave the building for a real lunch break, today. Most of us took advantage of that fact.
As it often does, conversation turned to marriage and family, with the single gals fielding questions about marriage and the married gals fielding questions about children. Only 2 of us in the group actually have children. We weren't fielding questions at all. ;)
The conversation took a turn and left me feeling as if I'd been sucker-punched.
One of the single gals declared, "I just want to have a child before I'm 35." She was asked, "Why 35?" and my stomach started to churn a bit.
I knew what was coming.
"No offense, Tara, but I don't want a Down's baby."
Rationally, I understand where she's coming from. She's young and is lacking the experience to see that life is not so easily controlled. She has no children and doesn't yet understand that all children have special needs. She doesn't have the spiritual wisdom to know that children are a gift, not a right, no matter how many chromosomes they sport.
Emotionally, I was a bit undone. I know what she said, but I heard, "I don't want a child like yours. He's not good enough. I will avoid one like him at all costs." My momma bear instincts were rising up and I'm afraid I was rather snarky in my response.
"You do know," I said pointedly, "that 80% of babies with Down syndrome are born to women under the age of 35, right?" She did not. The rest of the conversation is a little fuzzy as I tried to get control of my emotions.
Eon is not a mistake. He isn't a tragic accident. He is not a statistic to be avoided, or worse, a problem to be terminated. He was born in the image of an Almighty God who chose for him to be here. He is a gift. I am blessed to be his mom!
Honestly, it is harder (in some ways) to parent a child with Down syndrome. I'm sure even more complications will arise with age.
But, I wonder...how many difficulties are a true result of the extra 21st chromosome, and how many are simply a result of our culture? If ignorance, discrimination, self-absorption, and a general sense of entitlement were not part of our societal norm, would it be easier to raise a child with special needs? I think it would.
My life would be easier if I didn't feel like I had to defend my child's very right to exist. If I didn't feel like I had to prove to everyone how very worthy he is of acceptance, I could relax and enjoy him. My life would be cake if I didn't have to counteract basic ignorance of Down syndrome that I encounter almost daily (Ex, this week alone: Ds is caused by vaccines, only women over 35 have babies with Ds, "they're all so happy," "most of them can't talk," "you can teach them to read?", etc.).
The only frustration I have currently that is actually related to an extra copy of the 21st chromosome, is that Eon can't yet verbally communicate with us and I am certain that he one day will. (He's only 2 1/2.)
I wish that she could truly see how this child has my heart. How he has enriched my life in ways the "typical" children cannot. How he embraces life and expects us to do the same. How he is so very much like his typical peers and his differences only enhance him; they do not define him.
She really doesn't know what she's missing.
Saturday, September 10, 2011
Maybe he's just 2
Lately, I've been struggling with Down syndrome. At 2 1/2, Eon has rockin' gross motor skills and does pretty well with self-feeding and other fine motor tasks. Speech, however, is a whole 'nother ball of wax.
He used to have words. Up to fifteen, in fact. I don't know where they go, but they're gone. We no longer hear, "gallup, gallup, gallup" when he wants up or "goggie" when he sees the family pet. We don't hear "ook" when he wants to be read to. Those words are just gone and they've not been replaced. He continues to sign and adds to his signing vocabulary almost daily, but he doesn't attempt to speak. He seems lost when asked to imitate sounds or words, too. It breaks my heart. There are so many choices and ideas when it comes to speech. So many things to try and so little time. I don't know where to put our focus because no one has done any research into best speech practices for our kids. What if we waste our time pursuing something that won't help and ignore something that will? I'm looking into prompt therapy, sight reading, augmentative communication, or stopping signing altogether in hopes it will encourage spoken words.
What he does do when he's excited, frustrated, bored, hungry, feeling left out, or any other emotion is yell, "MOOOOOOOOW!" often repeatedly. Shushing him doesn't help. Whispering back doesn't make him stop. Telling him a firm, "NO" doesn't work, either. Honestly, it sounds a lot like a large, distressed cow. And it makes me cringe. He sounds very much like a person with special needs.
My reaction reveals a lot about me. It uncovers a boat load of pride and prejudice which have nothing to do with the classic novel. I'm embarrassed that my son makes noises that draw attention to him and the rest of us. I'm ashamed that I'm embarrassed. I'm frustrated because I don't know how to make him stop. I'm mortified that it reveals a prejudice about me. Why is it so important to me that he sound "normal"? Why do the looks of pity or irritation that we receive bother me so much? How can I expect other people to accept him, when I'm struggling to accept him, myself?
And then it occurs to me. I have had the occasion to parent a 2 year-old five other times. They have all been really good at being two. I have not enjoyed my outings with them. Their behavior was obnoxious and often mortifying. They were unpredictable and made me question my parenting skills. They caused people to stare with their tantrums. I received looks of pity and irritation. I was embarrassed.
Why should my experience with Eon be any different? Have I bought into the myth that people with Down syndrome are all "so happy"? Or did he just spoil me by being such a good baby? Why do I insist on making everything about Down syndrome?
Maybe, Eon's just 2...and he's really, really good at it.
He used to have words. Up to fifteen, in fact. I don't know where they go, but they're gone. We no longer hear, "gallup, gallup, gallup" when he wants up or "goggie" when he sees the family pet. We don't hear "ook" when he wants to be read to. Those words are just gone and they've not been replaced. He continues to sign and adds to his signing vocabulary almost daily, but he doesn't attempt to speak. He seems lost when asked to imitate sounds or words, too. It breaks my heart. There are so many choices and ideas when it comes to speech. So many things to try and so little time. I don't know where to put our focus because no one has done any research into best speech practices for our kids. What if we waste our time pursuing something that won't help and ignore something that will? I'm looking into prompt therapy, sight reading, augmentative communication, or stopping signing altogether in hopes it will encourage spoken words.
What he does do when he's excited, frustrated, bored, hungry, feeling left out, or any other emotion is yell, "MOOOOOOOOW!" often repeatedly. Shushing him doesn't help. Whispering back doesn't make him stop. Telling him a firm, "NO" doesn't work, either. Honestly, it sounds a lot like a large, distressed cow. And it makes me cringe. He sounds very much like a person with special needs.
My reaction reveals a lot about me. It uncovers a boat load of pride and prejudice which have nothing to do with the classic novel. I'm embarrassed that my son makes noises that draw attention to him and the rest of us. I'm ashamed that I'm embarrassed. I'm frustrated because I don't know how to make him stop. I'm mortified that it reveals a prejudice about me. Why is it so important to me that he sound "normal"? Why do the looks of pity or irritation that we receive bother me so much? How can I expect other people to accept him, when I'm struggling to accept him, myself?
And then it occurs to me. I have had the occasion to parent a 2 year-old five other times. They have all been really good at being two. I have not enjoyed my outings with them. Their behavior was obnoxious and often mortifying. They were unpredictable and made me question my parenting skills. They caused people to stare with their tantrums. I received looks of pity and irritation. I was embarrassed.
Why should my experience with Eon be any different? Have I bought into the myth that people with Down syndrome are all "so happy"? Or did he just spoil me by being such a good baby? Why do I insist on making everything about Down syndrome?
Maybe, Eon's just 2...and he's really, really good at it.
Sunday, August 7, 2011
Siblings and Down syndrome
Tali, 7, spent the evening playing with Eon until he had to go to bed. Then she picked up her baby sister and said, "You don't have Down syndrome, but that's okay. You're still cute!"...as if she was consoling her. She also informed me that I should have another baby because she needs a sister with Down syndrome, too. :-)
These moments bless me. I love it when my kids seek out Eon to play with or just be with. They truly love him, which I knew they would, but they also like him. He is enriching their lives. He is very much included in this family.
The bigger boys (6 & 4) have yet to really see him as different. They ask me occasionally why he can't talk, yet, and know that he has Down syndrome and gets therapy, but it doesn't change how they interact with him. He is always in on the action whether they are building tracks in their room or sliding down the stairs in totes.
Tali obviously knows he has Down syndrome. She finds it delightful! She loves to mother him and teach him new signs. He's her favorite hide and seek partner, too. If it were up to her, we'd have a dozen kids with Ds.
Ellie, 11, has a better understanding of it. She adores Eon and is very protective of him. She gets excited when he masters a skill he's been working on and gets frustrated for him when he struggles. She has developed a love for all people with Down syndrome and is very comfortable around people with any disability. She asks the most questions and is, therefore, the most knowledgeable about it. She stands by her statement made when he was weeks old that she will take care of him when we're gone.
Mick is 14 and at the age where different is not a good thing. Yet, she is very practical and has a strong personality. At a time in her life where she could be ashamed of her brother and want to hide him, I watch her reach down to pick him up while talking with her friends. At the grocery store, when he loudly vocalizes, I see her shush him and then tickle his belly just to hear him laugh. When he kicks up a fuss at nap time, she often asks, "Can he please just stay up? He can watch tv with me." And then I watch as she settles him on her lap and turns on his favorite show.
Keturah, almost 9 mos, will never know a life without Down syndrome as part of it. She just knows Eon as the big brother who used to steal and throw her pacifier, but now just kisses her and brings her toys.
My children amaze me. They have taken the changes to our life in stride. They accept Eon for Eon, mildly curious about the things that make him different, but fully embracing the ways he is the same.
We are blessed.
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