Monday, October 26, 2009

Well, he did it!

Ben crawled. Yep. He crawled ALL BY HIMSELF. Out of the blue during an ordinary evening, without any encouragment, my husband and I watched Ben get himself up on all fours and crawl toward us. Matt and I both had tears in our eyes. He only made it a few feet, but it was like watching a miracle unfold. We called the Grandparents. Posted the news on Facebook. We hugged both kids and celebrated! Ben's poor little muscles are so weak...yet he keeps trying and trying, and now he's on his way to a new level of independence. I'm so proud of him... and a little humbled by his consistently cheerful nature and unwavering determination.

In other news, we discovered he is also allergic to green peas. Green peas??!! Yes. It's true. We saw him break out in hives after eating some peas. We gave him Benedryl, not fully understanding what he was reacting to. The next evening, we tried peas again, and.... Tah Dah!!! He immediately broke out in an itchy rash again. After researching this online, I found that kids with peanut allergies are often also allergic to peas - another member of the legume family. I'll add that to my list. Before having Ben, I never knew I would someday view my kitchen as a war zone - a dangerous place full of life-threatening land-mines in the form of everyday peas and wheat bread.

Today, though, I'm putting all my worries aside and just soaking in the joy of the moment. Ben has crawled. He will continue to get better and stronger. What a kid. (And what a great big sister he has, as well!)

Thursday, October 15, 2009

A tasty tidbit.

The kiddos have been keeping me very busy lately. I've had a hard time finding even a few minutes to blog, but I'm going to try to type quickly this morning.

Ben has been amazing me in the past few weeks. He's been babbling more and more, and now officially says, "MaMa" at least a hundred times a day. His favorite activity right now is playing the piano. He thinks he has a true talent!

Our OT has given the thumbs up to start textured foods again. Ben had a clear allergic reaction to Saltine he is OFF the wheat and soy entirely again. The poor little guy has gotten very bored with his mushy diet, and has started refusing to eat a bit. We have been in search of safe and tastey tidbits for him, and came across Sunbutter (made from sunflower seeds) as a replacement for our beloved peanut butter, and Ben luh-uh-uhvs it! (And so do I) So yesterday, he had spoonful of sunbutter and some rice chex cereal for breakfast. He smiled from EAR to EAR... so glad to be eating real food again.

Other news.... the PT wants Ben to get AFO's (custom made braces for his little feet and ankles).... we're due for another MRI.... we're due for another swallow study.... we're doing all we can to avoid bringing the flu into Ben's world....

It's time for breakfast now... so I'd better go. I'm seeing two hungry children and a mommy who needs more coffee.

Wednesday, September 30, 2009

A change of plans...

OK. No water therapy today. Ben has decided to have a cold instead. Woke up with lots of gooey goo in his nose and a little gagging cough. Should be a fun day!!

Ben Ben Ben

Not too much really happening lately. Ben's just plugging along on every front. Knock on wood, he's been quite healthy and happy.

He is getting closer and closer to crawling... but he LOVES to walk now (obviously with me holding his hands). He'll do it all day long if he can wrangle someone into helping him. He's improving at his steps and balance, so that's also positive.

Increasingly, he is getting very frustrated when he can't communicate his wants and needs. When this happens, he just screams. I mean, he just SCREAMS. It can be frustrating, heartbreaking, or terrifying, depending on the moment. I'm really hoping that the speech therapy will provide us some resources to improve this.

So, anyway, we're off to pool-based therapy today. Splish splash.

Monday, September 14, 2009

Another bump in the road

Just a few short hours after my last happy post, Ben unleashed with gushy pukies and poopies all afternoon. I think it's just a common kind of illness, and nothing related to Ben's particular medical issues. I hope that's the case... and I hope it passes quickly. Mommy needs her rest.

Growing, growing, growing.

By following all the doctors' recommendations about Ben's allergies and his swallowing problems, Ben has been eating like an Olympian for the past month. He has gained just about two pounds in two months, and is getting stronger with every pound! Learning how to cook foods that are allergen-free and which also puree easily has not been too bad, and the benefits are well worth the work. It is time-consuming, of course... but I'm learning how to fit everything in my daily routine.

With the vomiting completely stopped, Ben has been SO much happier and his eczema has been very well-controlled as a bonus. What a relief!

Now, we will just continue to plug along with the therapy and get this boy crawling. He wants to be independent so badly... and my back wants him to be independent, too.

Wednesday, September 9, 2009

Just another day

Today was just a typical day around here. Sarah had school and dance class. Ben had speech therapy. Nothing new. Nothing scary. Good day, I guess.

Saturday, September 5, 2009

playground meltdown

It's been a hard week for me. I tried to take Sarah and Ben to the park this week, and I realized that I probably won't be able to do that alone again - at least not for a long time. Sarah is strong and independent and wants to test her own strength by trying new things on the playground. Ben is also independent, but still doesn't even have the strength to crawl. He didn't want to be held. He didn't want to be in the stroller. He wanted to be where all the other kids were... but how? There were many other kids younger than Ben who were running and playing with their siblings. There I was, breaking my back trying to help his wobbly little self stand and watch everyone else...while trying to keep Sarah safe and still let her enjoy herself. I was never able to satisfy either of the kids, and so we had to leave - Sarah and Ben both crying - me feeling overwhelmed.

The whole experience made me feel very sad, and it's been very hard to pull myself together. I find that my acceptance of Ben's issues comes and goes like the tide. Just when I think I've got it... it washes away and I'm left feeling defeated and flattened. As time passes, and Ben falls further and further behind, it is becoming harder and harder to bridge the gap between his needs and Sarah's needs. My needs are often left out of the mix completely.

I know that I have to push on and continue to try to focus on the positive...the successes...stay in the moment. Sometimes, though, the moments are just harder than I wish they were.

Monday, August 31, 2009

In the thick of it.

Here we are starting another week. Trying to find the energy to cope. The main task for this week is to determine a safe and allergen-free thickener for Ben's liquids. It's a long story...but so far we have eliminated 5 options, and will have to experiment with a 6th. Ugh.

Thursday, August 27, 2009

Haven't stopped blogging...

I haven't stopped blogging, I've just been MIA for awhile. August has been a VERY busy month for our family. All in all, Ben is doing GREAT. His allergist has advised us to avoid all nuts and eggs, and so far, so good.

Ben's strength is increasing. His weight is increasing. His babbling is increasing. Yeah, Ben!

Last week I attended a CEU for my license, which was the use of Zen meditation in treating anxiety disorders. It was a wonderful class, and I've been incorporating the techniques in my own "parental anxiety". I'm planning to pick back up on the regular blogging this week, since we will be finished with our summer travels, and little miss Sarah will be back in school.

Tuesday, August 4, 2009

The rest of the day...

Well, Ben kept his food down for the rest of the day, though it seems he has developed a cough. Something to keep an eye on, as usual.

He will be seeing his allergist on Thursday, and I'm excited to get some additional direction on all of the food allergies.

Today, he saw his speech therapist for the first session. She commented on how great Ben is doing. She was happy to see that he closes his lips around a spoon when he eats. In relation to some of her other patients, she remarked that Ben is really strong and has a lot going for him. I cheered with him that someone actually called him "strong". She gave us a few new things to work on now... in between the thousand things we were already working on. Overall, though, I think the speech therapy will be fun. The real goal of therapy at this point is to strengthen his throat, tongue, and mouth so that he can stop aspirating and begin to eat more food.

Speaking of food... following Ben's diet is PAINFUL for me so far. I'm trying, but really I'm only averaging two out of three meals a day that have been free of all of the "forbidden four" (wheat,eggs,soy,peanuts). I need some free time to really cook some meals ahead. Considering I've eaten peanut butter on wheat toast for breakfast most days for the past few years, it's a big change to do all at once. The brown rice crackers are not too bad... but really not too good, either!

The dry spell has ended

Darn. After two comfortable weeks, Benner threw up his whole bottle this morning. Is it a fluke or the beginning of another round of wet yucky days? Guess only time will tell.

Monday, August 3, 2009

Allergy diet - Day 3

It's been three days for me following Ben's "allergen free" diet. I have slipped and had a couple of forbidden foods myself, but mostly I've been trying to make the right substitutions. On the first day of the diet, I attended a party where I was so proud of myself for finding foods with the right ingredients for dinner. Later, however, I was too weak to decline the homemade orange/pineapple cake - made with wheat flour and eggs, of course. I've never been a smoker, but I imagine that quitting smoking could not be worse than giving up wheat in my diet.

I've absolutely kept Ben free of the trouble foods. Tomorrow, I'm making a trip to the health food store to get the ingredients to do some of the baked sweet treats in my new cookbooks. I wonder how delicious barley flour and egg-substitute will taste...

As for Ben, he has been enjoying his fresh cooked meals, and he is doing really well. Today he looked stronger than I've ever seen him. He was actually scooting himself forward on his tummy, instead of rolling to get to his toys. The biggest news -it has been over two weeks now since he has thrown up at all!!! Way to go, Ben!

Since Ben will grow up on this diet from such an early age, I know he'll never miss these foods he's not allowed to eat. For me, though, I've had a bit of sadness thinking of some of the things he'll never know... like my mom's homemade custard pie... or her Thanksgiving dressing. I actually got a little tearful thinking that Ben could never enjoy these foods... but then it dawned on me that Sarah is allowed to eat anything she wants and she won't touch either of those things! So, instead of feeling sad, I suppose my energy is much better spent learning to cook the allergen free organic buckwheat cherry pancakes in my new cookbook. Yum.

Saturday, August 1, 2009

Just one example

One example of the crazy routine I have to follow for Benner.

Here is what feeding time looks like for Ben:
1. He should be bounced on a balance ball for about 5 minutes prior to feeding to help "turn on" his muscle tone.
2. He should be given some stimulation for his mouth and cheeks. I am supposed to use an electric toothbrush to vibrate along his cheeks and under his chin, and a little on his teeth and gums as well.
3. He should be given something cold. Before he is allowed to eat his true meal, he has to be fed at least a quarter cup of something very cold to help turn on his sensory perceptions. It's also helpful to use spoons that have been left in the freezer.
4. Because he is now restricted from eating solids that he can feed himself, I must give him a toy or something to occupy his hands to reduce his frustration of not feeding himself. (He is too jerky to self-feed the purees).
5. Now he is finally able to eat something - something that I have pre-cooked and hand-ground into a puree - and that does not contain any wheat, eggs, soy, or peanuts.
6. I'm supposed to carefully watch for any signs of aspiration... eye watering, runny nose... if there is any coughing I must stop feeding him that particular food completely for that session.
7. We must be certain that he remains upright now for at least 30 minutes so that he's less likely to experience any reflux.

I'm not complaining... but when Sarah was Ben's age, I could hand her a grilled cheese sandwich and a glass of milk.

Knowing what I know about kids like Ben, I'm mostly just thankful that he is able to eat at all, and that he's not hooked up to a feeding tube at this point. I will keep up with the wild routines as long as I have to. Sometimes when I think of all that's involved with Ben's daily routines, I want to hide my head in the sand... so I have to just take it minute by minute... and try to stay present... and try not to miss all the joy that comes along with all this craziness.

Friday, July 31, 2009

Diet starts today

I've spent the past week researching information about Ben's food allergies and trying to learn what to prepare and how to prepare it. He has not had any wheat, soy, eggs, or peanuts since his tests came back. Today, however, marks the first day for my one month trial to follow his diet as well.

I haven't even had breakfast yet, and already I've had to give up something... my regular coffee creamer. It contains soy. Dagnabit.

I believe that following Ben's diet is going to force me to learn to cook the recipes and become more personally aware of these food ingredients. No one likes bread more than I I know giving up my Bread Company fix will force me to find alternatives that Ben can enjoy as well.

Ben's new allergy results have been somewhat hard for me to accept. Caring for Ben was already WAY more intensive than I'd like...but the added responsibility of cooking an entirely new way has felt really daunting to me....not to mention the worry of him encountering something dangerous and having a bad reaction.

For now, I guess the best thing to do is have another cup of strong black cream, thanks.

Tuesday, July 28, 2009

Another puzzle to piece together

So...On Friday afternoon at 5pm, Ben's pulmonologist called with his allergy test results. The doctor started out by telling me that Ben is one of the most allergic patients he has ever seen. As it turns out, Ben is dangerously allergic to peanuts, eggs, wheat, and soy. He is also highly allergic to cats, dogs, tree pollen, grasses, dust mites, and weeds. He ALSO has some sensitivity to milk, corn, sesame, and shrimp. Yep. That sounds pretty bad to me.

OK. So, I now have to carry an epi-pen everywhere I go with Ben. The doctor advised that we MUST NOT allow Ben to eat peanuts, eggs, wheat, or soy... or he may go into anaphylactic shock. Since pretty much everything in our house contains one or more of those ingredients, I'm now starting the journey to learn a new way of cooking and eating. I've ordered the allergen-free whole foods cook books. I've thrown away all the peanut products. I've stocked up on oat flour. Ready. Set. Here I go.

Over the next month, my blogging will be dedicated to my task of learning this new diet, and trying to follow it right along with Ben. In reality, eliminating processed foods and cooking with only natural and organic ingredients will make us all healthier.... but oh....I already miss my peanut butter.

I once had a chiropractor convince me that my whole life would improve if I would just give up I did...for four days. Now, I'm going to challenge myself to follow Ben's diet plan very strictly for the whole month of August. I believe this will help me learn about the foods and really try to learn the recipes, since I'll have to eat them too. I'm going to share it all here... the ups, the downs, and the painful cravings. If Ben can do it, then so can I. At least for one month, right??

Monday, July 20, 2009

No Angel-man here

Well, Ben's latest and greatest test results are in. The genetic testing has ruled-out Angelman Syndrome. Good news, I suppose. This is one more genetic disorder that Ben has avoided. He continues to stump the doctors. Next stop will be a pediatric geneticist.

Ben's swallow study showed us that he does aspirate liquid and food into his lungs while eating and drinking. We have some new steps to take to avoid this, and so far so's been about a week. With a little help from Ben's nutritionist, and my new handy-dandy food grinder, I'm hoping to expand his diet and help him put on a little weight and build some muscle.

This will be a busy week for Ben. He will be seeing his eye surgeon tomorrow morning, to determine if he'll need a second eye surgery. Tomorrow afternoon, he'll have a meeting with the Early Intervention team to establish his goals for the next six months. (I'm pretty sure we're adding two new therapists to the team - water therapy and speech therapy.) Next, on Wednesday, he will see a new pediatric pulmonologist to check his lungs for any damage from the aspiration, the bouts of pneumonia, and all the interventions he received in the NICU. Then, Thursday and Friday are PT and OT sessions. Yes, there are a lot of people for Ben to charm this week.

In addition to all of his appointments, he is currently on a round of antibiotics, oral steroids, and inhaled steroids to fight off a respiratory infection that has made it's rounds in our family. Unfortunately for Ben, a virus that causes a little cold for most of us can land him in the hospital.

All the medical stuff aside, Ben's personality continues to grow and shine through more and more each day. He's babbling a lot more. He's trying SO hard to crawl. He is in general just the sweetest and happiest kid you could ever ask for. I find myself so grateful today to have two such amazing kids as Sarah and Ben.

Tuesday, July 7, 2009

The other Ben

I've been thinking a lot lately about my Great Aunt Bennie. We named baby Ben in honor of her. She died almost 10 years ago, though it seems like only yesterday. Now that I have my own little Bennie in the house, it's almost impossible not to think of her on a daily basis.

Aunt Ben was one of the most important and influencial people in my life. I suppose she sort of filled the role of a third grandmother to me... but she was truly more of a best girlfriend, in spite of the sixty or so years difference in our age.

I admired Aunt Ben for so many reasons. To start, she went to college when it wasn't common for a woman to do so, and she became a teacher - a special education teacher. She was married for over 70 years to my Great Uncle Govie. She was smart, kind, brave, faithful, loving, quick-witted, and funny. Throughout my highschool years, she and I would have long phone conversations, and if I was struggling with something in school - be it social or academic - she was certain to have a helpful answer.

Aunt Ben had only one child, a little boy named Paul. He died suddenly when he was 12 years old. She spoke of him rarely. Now being a mother myself, I can't imagine the sadness that must have always remained with her. When things with Ben get hard, I can't help but wish she were here to talk to now...her years of experience, wisdom, and love to share with me.

Knowing the dedication that Aunt Ben had for special needs children, it seems so ironic to me that her namesake is himself a special needs child. It also feels ironic that Ben is, in his own way, already a teacher just as Aunt Ben once was. While caring for baby Ben, he has taught me patience, courage, faith, and determination. He has taught me that smiles can be found when I least expect them. Joy can be found in the smallest victories. Hope isn't just a desperate wish from a sad heart, but instead it is a conscious decision to remain strong and remain open to the possibility for success and unexpected triumph.

Looking at both my children, I feel Aunt Ben's presence. When I think of her, I can imagine her cheering us on... offering supportive words... being in awe of Sarah, and being Ben's biggest fan. I'm so proud to have named my special boy after her, and I know that in spirit, she is quite proud as well. What a blessing for me to have the honor of knowing them both.

Tuesday, June 30, 2009

Forward motion

Today, Ben made some forward motion that resembled an attempt to crawl. He was sitting on the floor, and instead of falling backward and then rolling toward his toys, he pushed himself forward onto his hands and knees. He pretty quickly collapsed on his face, but, hey, it was an attempt! He really had a great overall day today. He ate a lot, and played a lot, and did not throw up AT ALL! Now, that's my boy!! Keep it up, Benner.

I'm holding onto a hope that Ben will be able to crawl by Christmas this year. I'm going to hold on to this intention in my mind, and work with him each day believing that this can - and will - happen. What a fantastic Christmas gift this could make!

Sunday, June 28, 2009

Status Quo

Not much new to report in Ben-land. He's still wobbly. The frequency of his vomitting has decreased in the past month, but there have still been some unfortunate episodes. I've developed a sort of PTSD response to his coughs, as they are often the precurser to the big sloppy show. Fortunately, we finally have his swallow study scheduled, and I'm hoping that will offer some insight into his eating (and keeping it down) difficulties.

We've started the introduction of Kinesio tape, which is long bandage-like strips of tape running the length of Ben's spine, designed to help turn on his muscle tone. I don't know if it will help, but it's non-invasive and worth a try. It has caused quite a stir to friends and family who've wondered why Ben needs these huge BandAids.

Still awaiting some lingering test results. I'm growing tired of following up with the doctor's office staff who promise to call me back, but rarely do. Just one more thing on my expanding "to do" list. I find it hard to maintain motivation to keep hounding them, when I don't really believe that the answer will matter much.

So, that's it for now. Life goes on with Ben in his typical wiggly and giggly fashion.

Tuesday, June 23, 2009

Gawkers and talkers...

I belong to an online group for parents who have children with hypotonia, along with various other illnesses. Today, there have been a lot of posts from parents who are tired, angry, and offended by others who offer inappropriate advice, or who gawk, or who make rude comments about their children.

I believe most people have the best of intentions when offering their 2-cents worth. Speaking from my own experience with Ben, however, the level of exposure to advice multiplies exponentially with every layer of illness and delay. In the past 15 months of Ben's life, he has seen a minimum of 12 doctors, and probably 20 nurses, along with a case coordinator, a nutritionist, and weekly sessions with his physical therapist and occupational therapist. Add to that grandparents, aunts and uncles, friends, acquaintances, and the occasional passer-by, and you can see how many opinions might start to add up. Unfortunately, some of this advice does come with a not-so-subtle tone of judgement that suggests we, as Ben's parents, aren't doing everything we could do for him. I can't count how many times I've heard, "Have you tried...(insert random treatments here)??" My favorite suggestions are those distant recollections of a miracle cure such as, "I think my friend's neighbor's nephew's daughter in Montana had the same thing as your son, and a little vitamin C cleared it all up. Why don't you try that??!"

As for the gawk-factor, again, I don't believe people are intentionally rude. Unfortunately, many people are not exposed to enough diversity to easily know how to handle themselves when they encounter someone who is different from themselves, be it racially, culturally, developmentally, or medically.

I think the reason that the stares and comments can be so painful is that first and foremost, our children are our children... not just our "special needs" children. When life gets so full of evaluations, medications, and operations, it seems that all other people see is what is wrong with the child. We want desperately for people to see the beautiful, courageous, funny, and happy kids that we see, and not always be reminded that there is something "different".

After all is said and done, I don't expect everyone I meet to communicate with complete empathy about Ben's situation. I believe it's also my responsibility not to over-react to the well-intentioned helpers, the uninformed tactless opinion-launchers, or the just plain rude gawkers.

Saturday, June 20, 2009

You show 'em, Ben!

It appears that Ben overheard his therapists talking about his lack of progress.... and now he wants to prove them wrong! In the past couple of days, Ben has shown a small surge in strength, and he is actually trying to pull himself up to a standing position. For Ben, just to demonstrate the motivation to attempt this task is a big step.

He has also decided that he should now feed himself. Because of his ataxia, or incoordinated movements, this is a particularly tricky thing for Ben to do, but he is determined to do it nonetheless. If we try to take the spoon away to feed him ourselves, he squawks like a bird and refuses to eat until we give him back the spoon. I'm so impressed with his determination and his desire for independence. So what if he ends up with smashed carrots in his eyelashes, nose, and ears?! He gets some in his mouth, too, and we are so very proud of him.

Because of Ben's physical limitations, I'm afraid that sometimes I haven't always given him the opportunities to demonstrate how much he can do - how much he does know. Too often, I'm ashamed to say, I've just assumed he can't or won't want to do something. Now watching him try to feed himself and try to get around more on his own, my eyes are more focused on the possibilities for his success. He is trying to express his real need to grow up and show the world all of his amazing talents. I'm so glad he is stubborn enough to get his point across, even if he needs to use creative bird-squawks instead of ordinary words. I do so love my little Ben.

Thursday, June 18, 2009

A great message.

This morning, my husband found me in the living room around 6:30am. I was standing and holding Ben while watching TV and sobbing. I was watching a recorded Oprah show about miracle babies. Included in the show was a particular YouTube video (Link included below) about a father's tribute to his son. This little baby was born with a genetic disorder that was "incompatible with life" and although he only lived 99 days, his parents cherished every moment.

These parents are such a great example of living for in the moment...approaching life with a thankful heart instead of asking "why me?" For me, this was a great way to start my morning. My head and heart are better focused, and I'm so thankful to these brave parents for sharing their love of their son with the world.

To see the video on Oprah's site:

Tuesday, June 16, 2009

Hard to hear

I'm with Ben everyday, so I know that he is not progressing very quickly. If I look back six months, I can see that he's learned some new skills since then, but he is still so far away from gaining much independence.

Yesterday, his physical therapist explained to me that in fact, Ben is not responding to therapy as well as they had hoped. Even though I already knew this, somehow when I heard it from her, I felt like I'd swallowed a brick. I suddenly felt very heavy. She explained that she believes Ben's strength is improving, but his involuntary muscle movements seem to be interfering with him achieving his goals. I had to fight back my tears.

His therapist went on to tell me of another boy she has worked with who reminds her very much of Ben. Like Ben, this other boy has never received a diagnosis that explains his delays. She explained that this boy is now two and a half, and can crawl and pull himself up on furniture. That gave me some hope, I suppose. She finally added that she feels Ben's happy and motivated personality will help him a lot. OK, I thought... I'll hang onto that for now.

Sunday, June 14, 2009

Bleep Bleep Bleep... etc etc

Sometimes I wish I was carrying a "mommy cam" so I could show everyone just exactly what my days are like. At one point today I thought Ben's mouth was bleeding, but it turned out to be red playdough. Anyone out there who has kids knows that every now and then you encounter a rough day. My rough days are unfortunately complicated by Ben's delays and wiggly nuances.

Today, Sarah had another birthday party to attend...two hours at an indoor jumping/bouncing playground. I should mention, my husband has been traveling for seven days now, and he was supposed to be back tonight. I was so excited to see him and was counting the hours...until he called today to say he'd be a few more days. I was disappointed, but I reminded myself to stay positive and stay in the moment... blah blah blah.... I was still disappointed.

Let's fast forward to the second hour of today's birthday party.... Sarah is wound up and squealing that high pitched laughter that only 3 year old girls and dogs can hear. Ben has had enough of the whole thing. Cranky, his only real method of protest is crying and jerking himself backward as hard as he can. He will not tolerate the stroller. He will only slightly tolerate me holding him.

Now it's time for cake and ice cream. Sarah is thrilled, and proceeds to get totally hopped up on sugar. Next, she is given a helium-filled balloon. With this, she has reached a state of total bliss. She and her little friends are bopping their balloons all around the room. Just then, I notice her doing the pee pee dance. It's the unmistakable holding of the crotch while bouncing back and forth from foot to foot. While holding cranky Ben, I take her by the hand to take a potty break. However, instead of walking along with me, she breaks free and goes running around the place like a cheetah on crack. She is feeling quite proud of her escape until.... the unthinkable.... she loses her balloon.

Sarah collapses to the ground in total despair. Great sobs. Lots of tears. I give her a hug and then continue to lead her to the potty. Reluctently, and still crying, Sarah goes into the stall with Ben and me. She can NOT stop crying. Wailing is more like it. Others in the restroom are starting to comment, and I'm certain that they believe I'm trying to chop her feet off with a dull knife. I try all my great Montessori mommy tricks. I calmly say, "I understand you're sad, Honey. Let's try to take some deep breaths." No luck. More crying, and then she says the worst four words she could say today (of all days)... "I want my Daddy." I wanted to just sit down and sob too. I wanted her daddy also.... Mostly at that moment I wanted him to be in that nasty stall instead of me. I had to internally censor all the words that were now coming to my mind....

Finally, after ten minutes -that's right, TEN MINUTES - Sarah calms down enough that she can actually pee. In the midst of her meltdown she has taken off her pants and underwear and kicked them across the stall. She now sits down on the dirty floor to put her clothes back on. Except... she was also given a long necklace as a party favor, and she has accidentally put her leg through the necklace, so she cannot pull her pants all the way up. She has to take everything back off and start over. I am now so hot and so tired of fighting to hold on to jerky, squirmy, cranky Ben that I seriously consider just grabbing her and running out of the building, letting her moon everyone in our path. Ugh.

We finally did get out of there, (yes, with Sarah's clothes on) and I'm thankful to be home now with a nice glass of Cabernet. Zen philosophy does help me cope with Ben's medical issues. I can focus on my breathing and find a state of calm and peace in almost any situation. However, for Sarah's meltdowns, it turns out I need to add some red wine.

Cheers. Here's to an easier day tomorrow....

Happy morning...

It's Sunday morning. Our week with Grandma and Grandpa is over, and everyone had a wonderful time. While Ben did suffer some from his dog allergy, his medications were helpful to him, and he powered through like the little trooper he is.

I learned this week that Ben loves to play in water. He had his first chance to play in a sprinkler and a splash pool with other children. Ben has always disliked bathtime, so I was very surprised to find him happily splashing in the water! How nice to watch Ben enjoying the same activity as all the other children.

For me, "staying in the moment" continues to be the best defense against stress and worries about Ben's health. It's amazing, really. It requires practice, but the payoff is so worth it. I would love to expand on my experiences with mindfulness meditation, but at this very moment, Sarah is determined to bring my attention to giving her doll a makeover. This sounds important....there is lipstick involved.... yes, I'd better take a look!

Tuesday, June 9, 2009

Uh oh.

There is a loud and ugly sound in my house tonight. It's the painful sound of Ben coughing. Among Ben's challenges is that he is highly allergic to pets. He just spent 24 hours at Grandma's house, (note that every family member we have has a dog) and now his skin is all broken out and he has a hacking cough. Poor little guy seems miserable. His coughing and subsequent screaming are very suggestive to me of yet another possible round of pneumonia. We are scheduled to go visit the other set of grandparents tomorrow, and I can feel my anxiety level starting to rise. I'm keeping my fingers crossed that he starts feeling better by morning. Every parent knows how hard it is to watch when a child is sick. With little Ben, this is pretty much the norm.

Fortunately, I attended a seminar today: The Psychology of Happiness. I learned some valuable tips for cultivating optimism amidst the most challenging of circumstances. I'm planning to put those to good use tonight. Those tips along with a vodka-tonic... Wish me luck.

Sunday, June 7, 2009

A happy summer weekend

This was one of those uneventful but pleasant weekends of summer. Ben is healthy and happy right now, so we could just relax and feel like a normal family of four! We did the usual - yard work, laundry, grocery shopping. On Saturday afternoon, I took Sarah to her friend's birthday party, and loved watching her socialize with her tiny preschool pals. On Sunday, we tried to BBQ in a thunderstorm, and enjoyed spending some time with friends. (It turns out that rain water adds a pleasant zing to the ordinary grilled burger!) Ben and Sarah loved having our friends as a captive audience, and they laughed and giggled all day.

Ben has now made it FIVE days without vomiting. I'm calling this vomit-watch 2009. With each passing day that he goes without throwing up, he seems stronger and happier. I'm hoping that his body will finally have a chance to get better nourishment, which will in turn allow him to maybe gain some muscle strength.

Not much else to say for today. It feels so wonderful when we can just relax into the normal rhythms of daily life without worrying about Ben's breathing treatments or medications or doctors appointments. When we have days like these, Ben's delays and struggles seem to fade away a bit, and life feels so much lighter.

Friday, June 5, 2009

Falling, falling, falling...

Have you ever had one of those intense and terrifying dreams, where you feel yourself falling, and you wake up just before you hit the ground? That is the sensation I feel everytime I allow myself to imagine our future with Ben. As much as I try to stay in the moment, I occasionally will catch myself thinking about what it will be like if he never gets any better. It is important to note here, that I am a social worker, and before I finished college, I provided direct care services to physically and mentally disabled individuals. I know what it's like to change the diaper of a sixteen year-old girl with CP. I know what it's like to use a gait belt to get someone in and out of a wheelchair. I know how it feels to spend 12 hours a day alone with someone whose only methods of communication are crying or hitting. I sometimes imagine how I'll feel if I'm forced to drive the big ugly van with a wheelchair lift, instead of the sexy, sporty 2-door that I've always wanted.

Today was one of those days where these thoughts floated in and out of my mind. It gets so overwhelming that I literally feel I'm going to fall into a sadness so deep that I may not find my way out. A feeling of panic overcomes me, and I have to quickly think about something else. I never imagined myself as a stay at home mom, let alone a stay at home mom of a severely disabled kid. Yet, here I am. I love my kids more than life itself, yet the pain is still very real and always just below the surface.

Thankfully, I have meditation... and Matt and Sarah... and Ben himself... to bring me back to into the moment. Just breath. Just one moment at a time. Just keep going.

Day two... the dry spell continues!

Well, two full days and nights have passed without Ben throwing up. Unbelievable! Could we have found a solution? Having a break from the vomit has made both Ben and me SO much happier! It's been a vast stretch of free time that I am usually spending cleaning the floor, changing Ben's clothes and then soothing his grumpy little self after each episode. I'm keeping my fingers crossed for another day....

Wednesday, June 3, 2009

A note about big sister, Sarah

As this blog is about our family's journey with raising our son, Ben, I want to be certain to document one huge contributor to our success... our beautiful daughter, Sarah. At just 3 years old, there is no doubt that Sarah is wise beyond her years. She is so loving and kind to her brother, and for the most part, this just seems to come naturally to her. In spite of all the extra time and attention that Ben requires from my husband and myself, Sarah never responds with jealousy. She is starting to notice that other friends of ours, who are the same age as Ben, are able to walk, run, jump, and talk... and yet, Ben can not. I have explained this by telling her that Ben's muscles are weak, and that it is very hard for him to learn the things that other babies are learning. Sarah often responds by saying, "Well, there is no better baby in the world than our Benny."

Today, I watched while Ben was rolling on the floor, struggling to reach a toy he wanted. Sarah was playing alone across the room. I didn't say anything, I was just watching. Ben wasn't crying or anything, but it was clear he was starting to get frustrated. All of a sudden, Sarah walked over to where he was, and said, "Here's your toy, Ben. I know things are hard for you, but I will help you."

How could a mommy ask for anything more?

A small victory!!

I can not believe it. Ben made it through this ENTIRE day without throwing up at all. I honestly can not remember the last time I could say that. Yesterday, Ben's nutritionist had explained an article she read about children whose stomachs are unable to expand properly while a meal is being eaten. She suggested reducing the volume of meals, and trying to feed him more often. Although I felt we were already feeding him small but frequent meals, I tried to go a step further with that today, and... no vomiting!! Hooray for Benjamin! I'm keeping my fingers crossed for tomorrow.

Ben was such a happy boy today, and he even had his first trip to Incredible Pizza with his sister, grandparents, and me. I was so excited to see him take his first ride on the carousel. He held on perfectly, and was so proud of himself. He loved watching Sarah run around and giggled right along with her all afternoon. What a great day. No doctors appointments. No illness. Ben was able to just be a happy little boy and spend a fun day with his family. What a rare, but much appreciated, break for us.

Tuesday, June 2, 2009

Tigers above and below me.

In a book by Geneen Roth, (When You Eat at the Refrigerator, Pull Up a Chair) she recounts her own version of an old Buddhist story. To quickly summarize, there was a woman who had dieted and exercised her whole life. Because she followed a strict high protien diet, she denied herself the pleasures of sweet fresh fruit. One day, she found herself running away from some tigers that had escaped from captivity. As she was finally trapped on a cliffside, with tigers both above and below her, she discovered a ripe strawberry. Realizing her death was inevitable, she ate the strawberry, and enjoyed it more than she ever could have imagined. Then she was eaten by tigers.

As Ms. Roth summarizes in the book, the moral of this story is that there are always tigers above and below us in our lives... job losses, illnesses, weight problems, etc... but it is up to us to continue to enjoy the pleasures and joys that are also always around us. It is important not to wait until we reach some imagined perfect time or place, because that perfect time will likely never arrive. With this story in mind, I will recap my afternoon....

After a very short nap, little Ben woke up crying. Knowing he had a doctors appointment in about an hour, I asked my daughter Sarah to change her clothes and get ready, while I changed Ben's diaper, fed him, dressed him, and tried to make myself presentable as well. Sarah chose a beautiful sundress, and Ben happily went about eating his lunch. Ahhh... how nice. Then, just as I was about to take the kids out to the car, a huge thunderstorm hit. Drats. Rain. Oh well, I thought, we can make a run for it. I buckled Ben in the car first, and then loaded the stroller. I buckled Sarah in the car... when to my surprise... she had forgotten undies under her dress. OK. Back inside, and up the stairs to get some panties. Once back to the car with the undies, I discoverd Ben had thrown up his entire lunch all over his shirt and carseat. Drats. Back inside for towels. Back outside for the cleanup. All the while, I'm standing outside the car in the thunderstorm. Ben sneezed about 10 times on the way to the doctor... huge gobs of yucky goo sprayed everywhere. With all this, we still arrived to the doctor on time.... only to wait AN HOUR in the waiting room. You might imagine how happy my children were to wait quietly on a chair for an hour. Needless to say, I felt surrounded by tigers at this point!!

Fortunately, I remembered this story from Geneen Roth's book, and I was still able to laugh at the silly things the kids said and did along the way. After Ben's appointment, we went to get library cards, and had fun choosing our first selections. We had a nice dinner and blew bubbles outside for a long time.

I do love ripe strawberries, and I hope I never pass one by.

My little Snoopy...

One of the hardest parts of life right now is the physical strain of carrying Ben around. He is around 20 lbs, and his lack of muscle tone, combined with his sometimes uncontrolled muscle movements make him very hard to carry. He generally lacks the ability to try to hold on or support himself very well. I explained it to my husband as it's like trying to carry a 20 lb beagle around the house all day. Snoopy Ben. Wiggly, yet still so very cute.

Sunday, May 31, 2009

The girls' weekend....

It is Sunday evening, and I spent most of this weekend away for a girls' escape to Kansas City. It was beautiful. The weather was gorgeous. I tried to soak up every luxurious moment of my "Kim-time". We started out with a delicious lunch at a trendy sidewalk cafe, and then skipped off from shop to shop along the Plaza. I loved the energy from all the other busy shoppers, and I felt so blessed to just find myself standing in the warm sunshine and feeling so relaxed and free. I sipped cocktails, dressed in clothes that had no chance of being soaked by spit-up, and danced until the wee hours of the morning. I felt very much myself.

As much as I needed and enjoyed this break, I've come to realize that sometimes, these little escapes from my daily grind actually make it harder to cope with the stark reality of Ben's issues and the work required to care for him. It seems like an odd result.... but it is the result nonetheless. Coming back home tonight was sort of a shock to my system that felt like stepping out of a warm comfortable room into a cold winter night. I don't know... maybe sometimes I think that if I'm gone for awhile, maybe Ben will seem better when I get back... maybe I'll see noticeable improvements... maybe I'll be happily surprised.

Instead of feeling happily surprised, tonight I'm feeling low and unsteady... and unsure that I have enough reserves to face the next few hectic weeks of therapies and doctors appointments and the ever-present waves of vomiting. Sometimes peace and strength feel elusive to me. My sense of spiritual connectedness can sometimes just evaporate and disappear like water into the surrounding air. At times like these, all I can do is just let myself have a good long cry and know that I'm doing my best, even though it feels like it may never be enough.

Friday, May 29, 2009

Still no answers....

I received a call this week from Ben's neurologist, explaining that two more lab tests have shown nothing. We're still awaiting the results from one additional genetic test.

When this all began, I felt such a sense of urgency about finding an answer - a diagnosis. When his first MRI was cancelled due to bronchitis, I was crushed, because I felt I needed to know what was wrong with my son. I've never been a patient person, and this drawn-out waiting felt so unfair to me. Yet, somewhere in those weeks of waiting, I slowly began to understand that my attention is more useful when focused on what is "right" with Ben, as opposed to whatever is "wrong". My meditation practices have helped me to stay mindful of the present moment, and not get all caught up in the "what if's" that can sometimes haunt me.

It has been seven months now since Ben was first examined by the neurologist. We know nothing more now than we did then in terms of Ben's underlying issues, and I've grown comfortable with the waiting. We all go through life creating our own agendas and plans, though none of us really knows what the future holds. With that thought in mind, I try to enjoy each cuddle and giggle from Ben, and try to be patient with each cough, cry, and medical procedure. I believe answers will come. I can wait.

A wise woman (my dear mom) recently told me, "Don't wish your life away. Enjoy what you've got right now". Good advice, Mom. I'm going to try to do just that.

Thursday, May 28, 2009

The morning puker

After downing his 6oz bottle this morning, my little squirmer-boy coughed three times and threw up all over. After so many months of practice, I am usually able to aim him so that the warm gush lands on the floor instead of my pants. Today my aim was perfect! We have also developed a smooth system for clean-up, with stacks of towels always on hand. We are still investigating whethor Ben's vomitting is due to acid reflux or some other medical issue. His medications don't seem to have any effect on him. After today's episode, he went on to have a happy morning. Sometimes, he gets very upset and needs a nap in order to recover. Living with this situation is like caring for a child with chronic, un-ending stomach flu. He's thrown-up in the car, in restaurants, in Target..... Let me be clear, this is not "spit-up"... it's full-fledged all out puke - everything in his little tummy. Poor kid. Yuck.

Wednesday, May 27, 2009

Getting to know my child....

At this point, we don't have a diagnosis that explains why little Ben is so severely delayed, but this much we do know - Ben is not a typical one-year-old. In addition to Ben, we have a 3 year-old daughter, Sarah, who is a vibrant, articulate, cheerful, smart, and oh-so-funny pre-schooler. Having Sarah first, we have had the good fortune to experience the trajectory of expected-textbook child development. Sarah has met every milestone either exactly on time, or a smidge early. In contrast, Ben has been delayed from the start. Because he spent a month in the NICU with some severe illness, for many months we sort of "gave him credit".... thinking he's a little behind, but would catch-up. At about 6 months, when he continued to face-plant himelf into the floor, unable to sit up, we had to admit there was a problem. The neurologist agreed with us.... something is wrong. Maybe a brain injury. Maybe a genetic disease. Maybe a chromosomal abnormality.

My thoughts...... Will he ever speak? Will he ever walk? Will he ever be able to say "Mommy"? What will our friends think about this? If Ben has "special needs" (a term I sort of hate, but which is accurately descriptive), will our family and friends still love him as he deserves? How will I cope if he's never potty-trained? How will we adjust if he can't walk??! Will I ever be able to go back to work? I don't want this to be real. I don't want this to be real. I don't want this to be real.........

In steps Zen. As a fledgeling follower of Buddhist teachings, I remembered that I needed to breath. I needed to become comfortable with the feeling of total groundlessness. I tried to remind myself that this situation would only carry the meaning which I assigned it... could be either good or bad... up to me to decide.

That sounds easy enough. After a year of dealing with A LOT of medical problems, I'm realizing that everyday requires a renewal of my committment to find peace and contentment within this situation. Parenting any child is a difficult undertaking. Throw in a bunch of oozing eczema, aspiration pnuemonia, and random but frequent vomitting, and you really might find your resources taxed. At least I do.

Starting Out....

Well, this is my first official post! I guess the first thing I should address is, "Who is Ben?" Well, Ben is my son. He is 14 months old. He has beautiful dark brown eyes and golden honey-brown hair. His smile gives me an instant shot of joy. After spending the first month of his life in the NICU, my husband and I cried tears of joy as we finally left the hospital to bring him home.... but little did we know what was to come.

In the first year of Ben's life, he's been hospitalized three times, he's endured surgery, he has enough doctors and therapists to complete the starting line-up for a baseball team, and his developmental delays have him functioning at about the level of a five-month old.

At now 14 months old, Ben can not sit up unsupported. He can not crawl or walk. He can't feed himself, and he is unable to say any words. He started rolling over just around his first birthday, and I was as joyful as I might have been if I had won the lottery. We still have no diagnosis for Ben, despite an MRI and countless lab tests and genetic testing.

I've decided to write this blog to help document Ben's journey - his struggles and his victories - and also to explore how we find joy and peace in the midst of medical complexities, sleep deprivation, and the normal hullabaloo that accompanies family life. So, this is my starting post.... more to come!