Cuttin’ a rug in the shoe department

Oh, Sue.

We were told our brand new foster daughter would only stay for a few months and that minimal commitment seemed like something we could handle for a while. We didn’t want to get too attached so we just gave her cuddles and did the perfunctory tasks of caring for an infant. But its funny because one day, I looked into those bottomless blue eyes after changing her diaper and realized that I had accidentally fallen in love. I didn’t have a choice in the matter. Weeks of diaper changing turned into months, months melted into years. And now, she is becoming ours forever. Someday soon.

Since coming to us, every ounce of heartache we have endured with the medical issues of our other children, Sue has brought joy in full measure. Even in her late blooming development, when Sue couldn’t move her body much from lack of muscle tone, her facial muscles were in perfect order, smiling and bringing light back into our hearts. The days I wanted to give up, I found her in her crib after a nap, arms outstretched with her smile just as wide, saying, “Hold you, Mama!!” And she wrapped her arms around my neck while patting my back and lifted me out of despair. If she weren’t here, who would do that in the middle of a Tuesday afternoon?

She balances it all out. For each of us. A few weeks ago, we found ourselves fretting over some tough choices (we thankfully didn’t have to make) for Layla. As we sat on the couch, my husband turned on some electronica. I looked over to see Sue hastily lining up all her stuffed animals on the couch. Oh, how cute. And then she started to dance. I mean, she threw her arms in the air then dropped it like it’s hot – DANCING! On her way back up (after dropping’ it, of course) she shouted over the loud music in her most elated voice, “Elmo, I danthing, Elmo!! I danthing!!!!” She desperately needed him to know – this was her moment. And our woes were forgotten for a time. And don’t get me started on the fact that it wasn’t that long ago that she couldn’t even walk.

This girl is larger than life. And the stronger she gets, the more confidence she has. Thank goodness for all the therapies she has to help her there. So, her little shimmy in the living room went public a few days ago. My husband took her to the mall one evening because it was raining and it is a good spot to walk the toddler. She REALLY likes to walk. Maybe it is because it took her so long to learn. He didn’t get far because wouldn’t you know it, they were playing some sweet beat in the Nordstrom shoe department. Sue wasted no time at all letting herself go. And GO she did. Right between the MAC makeup counter and the shoe department near the entrance to the mall, she was busting’ a move again with all the gusto a two year old is capable of. And every time, she loses herself in to the beat – she can’t hold still. At first, people just walked by and smiled like they always do. Everyone thinks she is cute. But then, the longer she kept at it, dancing her heart out, the more people just stopped to watch. And then they were cheering her on, and before you knew it, she had a circle of people just standing there, not shopping…but watching her. And she ate it up. The more they watched her, the bigger the circle, the longer she danced. For 20 minutes. It wasn’t just us this time – she made a whole crowd in a department store smile and laugh. She started her own flash mob. Oh, the tips she could have collected had there been a hat next to her on the floor.

Of this I have no doubt: there is just something about this little girl. Most people are mesmerized by Sue. Her smile and (just slightly maniacal) laugh is simply infectious. People who don’t care for small children are taken by her. And they do anything they can to win her love and affection. They can’t help themselves. She has that “Why, of course you love me!!” aura about her. And so they do. Sometimes I look at her and I think to myself, “How in the world do WE have YOU in our lives? Why are we so lucky?”

It was Sue herself that somehow snapped her birthmother out of a 14 year long funk to try to put her life together. And she worked so hard and is still doing the best she can! Sue, who can make Layla smile on her most difficult day wading through mental illness. Any silly story of Sue can melt the tension between her birthmother and I in a heartbeat. And we can laugh together. It is Sue who has stolen her big brother, Eddie’s heart and she thinks he is her own wonderful playful pet who happily does her bidding. This may be a problem someday since she will have all the smarts and will bend his will to hers with her naughty schemes. Yes, she is very naughty and already very schemy. But I love her for it.

She has saved my sanity. Her light, her loving spirit, her lisp, the way she calls me “mama,” her wobbly dance gyrations, and her thumb-sucking ways have buoyed my soul through some dark tunnels. And I believe that there is so much more of this ahead and it isn’t just for me. People often tell me how lucky she is to have us as foster parents. I don’t know what to say to that. Because what SHE has given ME and what she has brought into our family is beyond the power of words. She is a gift, and God was incredibly generous to me. He knew how much I would need her in my life – because she makes me laugh. Laughter is truly the best medicine for any ache. And for all those who need a smile, especially her loving birthmother, I will gladly share her.

Watch out for random public dance parties. She is probably responsible.

 

Advertisements

When it doesn’t fix: Laugh yourself off & try again

I have always loved the movie Forrest Gump. I love Forrest’s simplistic understanding of his world. His innocence, intense love, and loyalty for the people around him are heart warming and often astonishing. He reminds me so much of my Eddie. It is bizarre how much of that movie mirrors my life. I think Layla loves it because she identifies so well with Jenny’s relationship with Forrest. She needs the constancy of his love, but is frustrated by that same fierce loyalty. I wish I could demonstrate the resolved patience of his mama, but alas, I am nothing like her.

So I’m gonna be real with you: As much as I love that movie, the viewer only sees a romanticized version of what raising a child with a low IQ is like – you only see bits and pieces of what his mama went through to get him to adulthood. You don’t see how Forrest would have truly struggled through childhood, just trying to learn the basics to become an independent, functioning human being. His mama could scarcely have done it all on her own. And if she did, God bless her, she is a saint. I am being completely honest when I say that I know I can’t do it for Eddie – but then, his IQ is lower than Forrest Gump’s and epilepsy erases much of his learning. And, he may never be fully independent. Time will tell. In the meantime, Eddie’s development requires an army of therapists, specialists, teachers, coaches, medication etc. I often wonder if God is laughing at me because he gave me this child who I love whole-heartedly, knowing that Eddie squeezes every last drop of my patience, wringing me completely dry nearly every day. I am not a patient person, so He watches me struggle through it and laughs. I am not a saint, so instead of Sally Fields’ quiet, patient smile, I am either visibly irritated or I am laughing hysterically. I don’t know how to do it any better than that.

DO FORGIVE A SMALL RANT – A little piece of my soul dies every time I have to give yet another tutorial (visual demonstration included) on how to properly use a sponge. The fissures in my sanity crack open a little wider each time I have to bend down to tie an 11 year old’s shoes with a toddler on my hip in the pouring rain. The crow’s feet under my eyes grow yet another toe when I realize that he left the shower curtain open again and sprayed an inch of water all over the bathroom floor and can’t mop it up himself. The only reason I knew is because Layla stepped into the bathroom and screamed in shock as she slipped. Need I go on?

He has to be taught and re-taught again as though today is the first time he has tried. I have often said that teaching Eddie how to do just about anything is like trying to fill a bucket with a hole in the bottom. And too often, therapy doesn’t stick. But we have to try. I am not afraid to admit that someone else needs to take a turn for me sometimes. You never see Forrest’s Mama give up on teaching him to tie his shoes because it is literally just easier to do it for him. She doesn’t refuse to give the answer when he asks for the billionth time (and several therapists of varying specialties later) if the a “b” goes this way or that way??? But I did give up on that. And I am ok with that. Why? Because I have to keep myself from wanting to shove a screw driver into my ear since all of my words are on constant repeat like a broken record in regard to raising this loving, sweet-hearted, hilarious boy. I have to choose my battles wisely.

A MOMENT OF LOST PATIENCE – Imagine giving your 10 year old son directions:

1) Take this bag of recycling waste

2) Put it into the blue recycling container in the backyard

3) Thank your very much.

Imagine that since he did this yesterday and last week successfully, that you feel sure that he will just repeat what he has done before and if he runs into a problem, he can ask for redirection or come up with some kind of rational solution. But you find (to your over-used dismay) when you go out to the backyard a few hours later in the pouring rain that he neatly stacked every single piece of recyclable waste (paper included) around the recycle bin to be soaked and sodden right on the sidewalk. Why? Because the can was full (imploring eyes and palm-up gesticulations).Has anyone ever stacked recycle waste or garbage in the backyard before? No. Has he ever done this? No. Is it raining and will paper products turn to mush when wet? Yes. Do we keep a small recycle bin in the garage for when the dumpster is too full? Yes.

But none of this occurs to him. Ever. Oh, the mess on the sidewalk and inside my chest.

BUT SOMETIMES, IT’S FUNNY – Eddie, like any kid, will try to sneak into things he shouldn’t have. Unfortunately for him, he doesn’t know how to cover his tracks, or that the tracks even exist. One morning, I got his oatmeal all ready and set out onto the breakfast table. I walked away to get Baby Sue ready for the day. I came back into the kitchen to find sugar crystals all over the counter and the sugar jar left wide open. He honestly thought he could put more sugar into his bowl without me noticing it. And when I asked him if he put more sugar into his bowl, in a high-pitched voice, he whined, “Noooooo?” Yes, his “no” sounded like a question. When I pointed out the sugar all over the counter and the open jar, his voice came down an octave in an, “oh” while his face fell. Like a quick but audible whoops that most kids might think but never actually say. Guess who couldn’t clean up the mess because he can’t use a sponge effectively? His attempts would only make it worse and make me frustrated. I avoid frustration when I can – it’s like a defense mechanism. So instead, I couldn’t help but chuckle as I expertly sponged up the sugar crystals by myself.

TO TRY AGAIN – I now have more time in my schedule and a new referral from Eddie’s pediatrician for another round of Occupational Therapy. That means I get to take some pressure off myself and let someone else try to teach Eddie how to tie his shoes, brush his teeth (and I mean all of them), use a sponge to clean up his countless messes, curl his fingers over a computer keyboard instead of leaving them flat like he is trying to give it a high five, brush all of his hair and not just the top of his head, maybe even bathe himself properly(?) That last bit might be asking too much…but the list of needs is long.

I will take any success or progress he can achieve and I will give all the accolades to the person who can help make it happen. More than likely, it won’t be me. And what is more – whatever he learns, will have to be retaught at a later date. But we will keep trying. And there will be more stories to tell. Maybe someday when I find a trail of cookie crumbs, I will only have to lift a finger to point to the sponge and watch him clean up his own mess.

 

Parenting (muddling) through brain DISorders

Disorders have reigned supreme in my home for much of my motherhood. Disorders I couldn’t name, but KNEW deep down, they were wreaking havoc on our lives. Mental health disorders. Seizure disorders. In their mild forms, they are difficult obstacles to overcome. But in their more severe forms, they are the stuff of chaos – even life-destroying. In the midst of this frustration and fury that something yet unnamed has stolen all peace from my home, I would try to talk about it. But rather than finding an understanding ear, all too often I looked into incredulous stares and was given flippant reasons why the things tearing apart my family were perfectly normal. “All boys do this.” These well-meant placations undermined the truth, made me feel like a fraud. Or, better yet, I was told that I was the problem.

Case in point – health care professionals. As a young mother, I would describe the alarming behaviors in my two year old daughter: tantrums rising out of the blue at any time or any place with no perceivable cause. They lasted hours. I mean HOURS of a child screaming with trance like stares toward the ceiling, beating her thighs with her tiny fists until she made quarter-sized bruises all over them. I could do nothing to prevent these rages whether they occurred at a restaurant, a hotel room, our small apartment, the car, anywhere. I couldn’t do anything to stop them. Nothing. And I tried everything. The neurologist looked at me and told me that he had “never heard of such a thing in his life.” He dismissed me and humiliated me. I had nowhere to go from there… We spent 2 years in hellish fear that someone would accuse us of hurting her or causing this problem. One morning, at a farmer’s market, Layla had just enjoyed a chocolate doughnut and we were taking in the sights when she started up for no reason at all. A man followed us to our car and stood there as we tried to strap a flailing toddler into her carseat with our jaws clenched and seething. He called the police while staring at my license plate. I waited for 3 days for their knock on my door or for CPS to come take her from us. But it never happened.

And then the tantrums died down by the age of 4. Just like that.

I spent years and a small fortune seeking answers to help my children. To stabilize my home. At the age of eight, Layla fell under incredible stress at a new school. She was bullied daily, told that she could only be their friend if she paid them $5, or she was treated as though she didn’t exist at all, and the pressure and loneliness of it sent her into a tailspin. I saw alarming behaviors that were out of character for her.  And then one day,  after Layla re-enrolled in her old school, I got a call from her best friend’s mother. A call no mother wants to ever receive. While swinging on the playground, Layla had told her BFF about all her horrifying suicidal thoughts. Yes, children can have those. But when I cried out for help, I couldn’t find any mental health professionals with openings in my area except one nurse practitioner. She performed a battery of tests and interviews with Layla and myself, showed me the findings that Layla was struggling with depression and anxiety, but what my daughter needed, she said, was to “feel loved and valued” rather than medical intervention. Are you kidding me? Since I couldn’t get medical help, I put her in counseling for about a year. It did not stave off the psychosis that I now know she was going through. She lost hordes of friends because of bizarre behaviors that needed medicine, not love. She had plenty of that. And loads of affection and attention, too.

Before my children had their proper diagnoses, both children would lose control (for very different reasons of course) and would scream, cry and destroy anything in their paths. I had to sit on them or hold them tightly in an attempt to keep them from hurting themselves or each other. The pandemonium and fear left me completely drained. All this as I sat for years on waiting lists for specialists to make room in their schedules for us. After finally getting a new seizure disorder diagnosis, I was describing what was going on with another counselor to try to help Eddie learn to manage himself and all the trauma that comes with MRIs, EEGs, trips to the ER, the terrible things that adjusting to anti-seizure meds do to your child…the young woman, fresh out of college, told me there must be something I was doing to cause the problems.

My saving grace all this time was that the two kids rarely, if ever, overlapped in their worst of times – they simply traded off. No sooner than his seizures were under control a year and a half later, my daughter’s undiagnosed medical issues were flaring up again. I found myself sitting on an 11 year old to keep her from running out of our house in the freezing rain, late at night with only her socks and pajamas. Or from hurting herself as she would throw herself against walls. By some miracle I can’t explain, I finally found a psychiatrist taking new patients. (I have never been able to before or since in out community). But Layla had been suffering from severe depression for so long, she slipped into psychosis. And let me tell you, that is something you can’t ignore. In the midst of a psychotic break, it mirrors my sons seizures: she is not in there. The Layla I know is lost and I just hope to God that she will return.

It has taken 6 months of careful tweaking and praying, and sitting upon children disguised as wild animals, putting out fires, losing her friends, being humiliated by said friends in front of her peers, screaming, crying, debilitating depression, sleepless nights, endless appointments, purple bags under her eyes, slamming doors, unwanted drama of all kinds, but we have nearly hit that cautious cocktail of medications ushering relief into our lives. Most especially to her. And there are glimmers of hope that maybe this time, we will find peace in our home. A peace that has never been. But my hope is trepidatious. A fleeting, cracking thread. I want to have faith, but I find that I often must borrow the faith of those around me. I find it again through them.

Now I know, life really WAS that difficult –

I wasn’t crazy.

I wasn’t making it up.

It wasn’t my fault.

I discovered what it feels like to lose ALL hope. It is an ugly place to be and lingering there is not meant for the human soul. It is senseless and barren. But then one day, somehow that long lost friend, Hope, returns and carries you through. Some slight but palpable tickle lifts your chin again. Maybe, just maybe…

And then release finally cascades in ways you never anticipated. Diagnoses that would have devastated me a few years ago, shine a glimmer of something yet to be done, new roads to lead you to what is most needed. A painful but necessary quickening. I had to muddle through the chaos and DISorder to find help – and there is not a single stone left unturned. Armed with the resources needed to support my children in this tireless, but often beautiful thing called growing up, I find the load a little lighter. An easier yoke to bear. Maybe because we are all the stronger for it? Our circumstances haven’t changed, but my faith has deepened into a deep lapis, and I finally, FINALLY have help: a special education classroom, anti-seizure medications that work, a psychiatrist, and mental health medications that are nearly at a therapeutic level.

And that day, when she smiled again for the first time in months. A genuine, pain-shattering, happy smile. Hope.

Achieving tranquility, almost.

 

 

 

 

 

From mourning to laughter: Birthday surprises

I had just finished packing up and moving our foster daughter, Marisol, out of our home so she and her family could move out of state. She had lived with us on two separate occasions over the past year and we loved her and her family so much. Watching her go left us bereft and the sadness seemed to hollow us out.

The following day was my Eddie’s birthday and we did our usual: skip school and do whatever he wants! So we did. But it never amounts to much because he just isn’t an idea man. After lunch, we headed home and I got a phone call from our foster care agency. It was a surprise since we were specifically on the “do NOT call list” since our lives were still on the epilepsy roller coaster at the time. Odd, since the placement desk person, Jeannie had called me the week before to just “chat.”

She didn’t even say hello. Jeannie just blurted out “Hey, has Marisol moved out with her mama yet?….Because Marisol’s social worker has a newborn she really wants placed in your family. She specifically asked for you. And by the way, can you pick her up from the hospital by about 6 pm?”

I was a little taken aback but admittedly intrigued. OK, let me think this through. So I got the details and told her I would call back after I talked to my husband. And my pitch was this: “I won’t be mad if you want to say no. We can say no. Or you can listen to your crazy wife who really wants to say yes. I don’t know why, I just want to say yes. But its ok if we say no.” So he listened to his crazy wife. Then I started laughing and I couldn’t stop. THIS IS CRAZY, but I LIKE IT! I wanted to say yes, because I COULD say yes.

I laughed all the way to Target because I had given away all the carseats, the baby clothes, the glider, the bottles, everything I had for babies because a month before we said we would never take another baby. And then I changed my mind. I am a woman, I have the right to change my mind. (This is what happens when I say “never”). I was in stitches when Eddie and I picked out just 2 new baby outfits and a carseat. And the basics we needed to get through the night. Then, I texted my cousin and said “Help! I need stuff for a baby girl!!” And she gathered the troops and supplied practically every need…alongside my mother in law. People I had never met gave us bags of beautiful clothes for this little person who needed a home. So amazing!

And I laughed for four hours straight until we showed up at the hospital with the new carseat and our driver’s licenses, signed a few documents, and then we were ushered into an empty room. With only a baby. She had hardly been held in the two days since she had been born and I felt the enormity of her solitude and smallness in that big, sterile hospital room devoid of love or warmth. I remember rushing over to her crib and scooping her up. My first words to her were, “Oh Little Baby, we will be your family!” And all the hollow places filled up inside me. But I didn’t intend to get attached since we had been told that she would only be with us a few months. We didn’t know it at the time, but we were quite literally carrying home our own bundle of joy. It felt like we were stealing and as we exited the hospital, I was afraid the buzzers would go off like we were taking unpaid for merchandise. It never happened.

Well, thosIMG_3204e few months turned into 2 years and today is her birthday. I can’t stop smiling because she truly is going to be ours forever someday soon. She has stolen all of our hearts and has refused to give them back. Sue is a whirling dervish of naughty joy. She is a licker (as opposed to a biter), she is bossy, she is goofy and she hath the motht irrithithtable lithp. Her first “feelings” word was happy. And when I picked her up from daycare after sitting in a courtroom in a long and difficult settlement conference where her birthmother would agree to relinquish her parental rights, I walked into her classroom and she looked up. Light filled her face as a smile meant just for me spread over it and she proclaimed in her sing-song voice, “Happy, Mama! I happy, Mama!!” And I would sit in 1,000 more courtrooms if I had to in hopes to keep it that way.

And it floors me every time I think, that on this day 2 years ago, I had no idea this little beauty, full of love and brimming with happiness was to enter my life on Eddie’s birthday. I cannot imagine my life without her these past two years, we needed her so much. I thank God every morning when I walk in to her smile and her cheery little voice says, “Hi Maaaw-muh!! It’th awethome, Maaaaw-muh!” Yes it is!

 

 

Of Mountains Moved

We celebrate this month because it marks for us a full year since Eddie has had a seizure! It also has been a full year since he was diagnosed with Intellectual Disability! Why is that a good thing? It means he finally had the label required to access the resources he desperately needed at school. And I no longer have to help him do his homework (when I say “help,” I mean “do his homework and all projects for him so he can save face with his peers”). It is nearly impossible to have your child’s academic and health needs accommodated by school districts when they suffer from “invisible” disabilities. Eddie looks like a sociable, happy typical kid, but underneath, the damage done to his brain from malnutrition, epilepsy, and lack of prenatal care is profound. As a result, it has been a 7-year long and very expensive battle to obtain appropriate help and diagnoses themselves. Those mountains have finally been moved.

Between the lack of seizure activity and his placement in a special education classroom with only 14 other students and 3 teachers, his needs are finally met. And it means whatever progress and development his brain is capable of, he is actually able to move forward. Up until now, he has always taken 2 steps forward only to fall 3 steps back. I cannot begin to tell you the pressure, the strain, the constant frustration for our entire family. Data was constantly erasing from his brain. It still does, but he no longer suffers from mental fatigue. He wasn’t even good at the things he was good at.

Forward motion — just a few months ago, Eddie was drawing simple stick figures with lop-sided smiley faces (definitely his trademark), and now he can draw complex figures and really study his drawing to add the details…more or less. It may not sound like a big deal to you, but for him, and for us, it means everything!

IMG_3737
Note to Eddie: this is not tomato sauce.

Hop, 2 skips and a giant leap —  Eddie is an athletic freak of nature but you couldn’t always tell since you never knew if he would just run in circles, panicking as though he were in a war zone rather than a simple soccer field. Now, he plays mid-field and he controls…no, he dominates the game. He may still be clueless when I ask him to bring me the can of tomato sauce off the bottom shelf, behaving as though I was speaking Mandarin, but he can run a soccer game and set up plays for his team-mates. And this is miraculous!

He can excel within his talents and have SOMETHING to be good at. Something that demonstrates learning, skill, and most importantly, success. And this is such a relief to his parents and to those who love Eddie. Special Education has changed our lives and the idea of returning him to the general education classroom brings me nightmares. Mainstreaming kids with disabilities can sound like a great idea but for some children, it is terrifying and has disastrous health and social implications for children with vulnerable brains.

But for now, the clouds have parted, the mountains have moved and so we celebrate!  And since we don’t know what tomorrow brings…I have my personal fight song, “Rise Up” by Andra Day to take with you today:

 

 

Mending broken things

“You cwying, Mama?” I look into her little face, tears spilling down mine and I whisper since I cannot speak, “Yes, Baby. Mama is crying.” And she giggles and starts whispering back in sweet gibberish because she thinks its a fun game.

I am crying because yesterday I couldn’t feel anything when I got the news (and all the courtroom hugs) that Sue’s birthmother had agreed to relinquish her parental rights. A little relief, but mostly numb. I was supposed to be excited, happy for Sue, but sad for her birthmother. It was just an empty space. I just hoped that Sue would see her birthmother for their scheduled visit today.

But that was not to be. She called our case manager and cancelled all the visits she had left except for her “goodbye visit.” It was just too hard for her to take. She has been devastated and ravaged by her sacrifice. Upon learning this, I fell apart and cried and cried and cried some more as happy, oblivious, sweet Sue watched me. But we have therapy today so I had to pull myself together! And I did. But then sitting in the car in my driveway, thinking about the visit that wasn’t happening today or next week, I lost it all over again as I clutched the steering wheel. After a bit, I came back to the moment and my ears perked up at a song Sue was singing, with her garbled words but unmistakably perfect pitch and melody:

Yeth, Jee-thuth wuvth me…Yeth, Jee-thuth wuvth me…the Bible tellth me tho….

It was my gift. He gave it to me through her. She is with US so she can know that Jesus loves HER. And my tears dried up and my strength was renewed and we drove to therapy without me falling apart over the brokenness of this situation all over again.

Between her birthmother and I, nobody wins. Adoption comes at an incredible cost and through terrible losses. I have watched this woman for two years: praying and hoping for her, too. I have grieved the hopelessness and difficulty of her situation all this time. However, going forward, there are things I can say with certainty even in the middle of the wreckage of severed and damaged relationships. Because I saw it with my own eyes. I can tell OUR daughter so many beautiful things about her birthmother and healing WILL come.

  • I can tell Sue that she received her sweet, optimistic and loving spirit from her birth mother and her grandmother.
  • She will see her own smile in her aunt and grandmother’s faces, her deep blue eyes and upturned nose from her big sister, and her musical creative talents come from her grandfather.
  • She can be proud of her tenacity and her fighting spirit inherited directly from her birthmother.
  • I can tell her when she asks me “WHY??” someday without a second thought that her birthmother fought hard for Sue. She did everything she was supposed to, she showed up, she conquered some of her demons with a determination I rarely see in people around me. She gave it her all. But she just couldn’t make the progress Sue needed. Lord knows that she truly tried. Not every foster child has a birth parent who will work that hard. Her mother did it all because she loves Sue so deeply.
  • Sue will get the best of both families, she will see and know her birth family but have all the love and care she needs as a special needs child in our home.

I don’t know what this will look like in the coming months and years but by the grace of God, this will be rebuilt into something beautiful. The wonderful relationship I had with her birthmother will be renewed. But for now, though I am so thrilled that Sue will have everything she needs and she will be forever part of our family, I grieve. Her birthmother grieves. And Sue is completely and totally oblivious. For that I am incredibly thankful. She doesn’t have to see this turmoil. Rest assured, she will have to come to terms with adoption but THIS part, she will never truly know.

To these broken things and the mending to come, I bear witness.

When I disappear: coping through special needs

I often disappear when the medical diagnoses in my home are not under control. I am not saying this is how all parents of special needs children deal with it, but I do. It isn’t intentional or personal, it’s just how I cope. And to all my friends and family who have gone weeks or months without hearing from me…I am really sorry.

It’s as though my two eldest tag team back and forth between health and wellness. They have never been “stable” at the same time that I can remember. If Eddie’s epilepsy isn’t under control, or he’s just having “drop seizures” from extreme mental exhaustion…or if Layla’s medications aren’t cutting it and her mental state has spun out of control, all I can do is hide. All my energy is spent – I am in survival mode. I don’t go on Facebook, I struggle to return phone calls, I don’t attend parties, I just can’t. More importantly, the kids can’t either.

For self care: I do yoga, I write to process what is going on, read from Psalms and just pray for more strength and do the best I can. As hard as it can get at times, I try to remember that THIS is my calling. Whether it is the Lord or whether it is simply the state entrusting them into my care, THIS is my mission: to give each child in my home the level of care they need to reach THEIR personal potential. I am not going to try and cram them into a version of “success” that society tries to dictate for them. It takes quite a bit of pressure off when you can “train a child up in the ways HE or SHE should go.” (Proverbs 22:6) And this gives them permission to be themselves.

I was chatting with a friend the other day – we both have little boys with special needs but her son doesn’t have a firm diagnosis. And it impacts her family life dramatically. Our family had the same problem with both Layla and Eddie: it took years and years to get in front of the right specialist who could or would diagnose either child but we knew SOMETHING was terribly wrong since both were just toddlers. This is a difficult place to be and it is a difficult place for others outside the situation to understand. Despite the self care and constant personal reminders of my mission, the struggle never completely goes away when children have chronic medical issues.

One thing resonated significantly with me in our conversation: ISOLATION

…And even upon recalling conversations with other mothers in similar situations, I realized that I am not the only person who has children with medical issues who feels the isolation that just naturally happens when taking care of high needs kiddos. It is isolating for all of us for so many reasons I won’t even go into here (that is another blog altogether). But it isn’t anyone’s fault – everyone does the best they can with what they know! It is not a complaint, but merely an observation. Our situations are unique and isolation occurs for different reasons for each one of us.

So, what can our friends and family do to show us support? This is a difficult and multi-faceted question to answer and each of us would give you a very different response. (Sorry!) That said, if you notice you haven’t heard from people like us in a while….please, oh pretty please, reach out to us! Last fall, my aunt knew that our family had a particularly difficult time with a foster child with extremely high needs and then out of the blue, she sent me the sweetest care package filled with fun spa things to help me feel spoiled – I thought I had won the lottery! Even a simple phone call (that may or may not be immediately returned – but know it will mean the world to us to hear your voice and know you thought of us), or an encouraging text, or a card that comes via snail mail – the gesture is so deeply appreciated! We desperately need to hear from you.

For you parents out there in survival mode:

I am extremely curious as to what other parents do in tough times or long seasons when the “help,” or therapy, or medication doesn’t help?? How do you cope? What do you do for self care? I am dying to know!