Just before her adoption, we were asked to also foster her little sister, who was about to be born.
I was hesitant. I didn’t want to take on a child who had a high chance of returning to her birth parents. But I couldn’t let my little girl’s sister go to strangers, so we said yes.
As time passed, the birth parents weren’t doing their part, and I felt more and more like she was my baby, and I would have her forever.
I should have been happy. I had everything I’d ever wanted!
The money the state paid us to take care of foster children made it possible for me to be home with those two pretty little girls all day. I had always wanted to be a stay-at-home-mom. And now I had not one, but two children to take care of! The girls were happy, and the best sound in the world was their laughter as they played together.
I wish I could say my husband felt the same way.
He was resentful of that baby as soon as she entered our home.
He hated all the time I was spending with her, instead of him.
This one particular night breaks my heart. I wish I could go back and change things, but he had trained me for years not to question him. Fear of his anger kept me frozen.
The baby had learned to stand. She was so proud of herself! There was no stopping her now!
From the time she was a newborn, she had always hated going to sleep, and getting her to settle down for bed was a long, drawn-out process. But with her newly developed skill of standing, it became much worse. I would lay her down, she would stand up. I would put her down again, she would stand right back up.
One night, he had enough. “I”ll make her learn she has to lay down when it’s bedtime,” he said.
He came into the girls’ bedroom with me when I put her to bed.
But what was I supposed to do? He was my husband, and I was afraid to question him.
The battle of wills between a man in his 40’s and a less-than-year-old baby went on for a while. I would lay her down, she would stand up, he would spray her in the face.
Finally, he pushed me too far. She was soaking wet, dripping on her sheets. I knew even if she did go to sleep, she would end up getting sick from trying to sleep in her wet clothes and bed. I took a chance and said, “That’s enough!”
Amazingly, he walked out the door without saying a word.
I took her out of her bed, pulled her wet clothes off of her, dried her with her little hooded towel, then put clean, dry pajamas on her. Then I changed the bedding in her crib and started the bedtime process again.
When I walked out of the bedroom, she was back to standing in the crib. I walked out to the living room where he was watching TV. I looked him dead in the eye and said, “Your way didn’t work, and you’re never doing that again.”
He didn’t argue, and he never tried that stunt again.
I think he figured out that there was only so far he could push me when it came to the children.
I have had 10 miscarriages – just saying that is hard for me
For so long I have tried to sweep it under the rug – once my number became larger then three I became numb to it all. I’m not really an emotional person, but this topic always brings up memories as if it all happened yesterday.
I have been through 10 miscarriages in 6 years.
I am 28 years old – I have been pregnant 13 times – and have 3 living children.
I can be a very private person, but I think miscarriage and infertility have enough secrecy surrounding it that I do not want to perpetuate it. The more it is talked about – the more women and families can feel supported and listened to and important – not embarrassed and ashamed like I am struggling to not feel. I am opening up the door to talk about it – so here is my long story:
My first two miscarriages were kind of a blur to me. We were not trying to get pregnant and basically found out we were expecting the same time we realized we were miscarrying. I had always heard that having one miscarriage was ‘normal’ and so I honestly didn’t put too much thought into it. They were still very painful and devastating to me but I thought once we were actively trying everything would be OK – that no one would have more then 2.
My husband and I decided to start trying for a family and we actively began trying to conceive using basal body temping as a guide. We became pregnant again in November 2004 after the first month of trying. I was about 6 weeks pregnant just around Christmas when I miscarried (#3). This time it hit me – hard. I mean I have never heard of someone who has had 3 miscarriages ever – let alone in a row.
Basal Body Temperature Chart using Fertility Friend
I began feverishly doing my research.
With my basal body charts I had noticed that my luteal phase was under 10 days (according to research the shortest it should be for a successful pregnancy) so I began to take vitamins B6 and B12 to lengthen it. I went to the doctor and his thought was that my progesterone was low and that is why I was not able to hold on to the pregnancy past 6 weeks. So a new plan evolved. I would stay on the vitamins and go on a progesterone supplement the moment I found out I was pregnant. This made the basal body temping so important – I needed to know the exact date.
We began another month of trying to conceive (TTC). Thermometer in hand and a plan in mind we became pregnant again in June and I was on the progesterone medication. The plan was to stay on until 12 weeks pregnant and then to slowly wean myself off. When 12 weeks came along we lowered the dose of progesterone but I began to bleed so we quickly went back onto the medication. The baby was doing fine and the new plan was to wean off at 20 weeks. 20 weeks came and I was successfully weaned off with no further complications. I had my first full term baby (Big P) in December 2005 – a healthy boy.
Big P – 8lbs 1oz
My husband and I had always wanted to have our kids close in age, so we starting TTC again relatively quickly. I began the basal body temping again and got pregnant pretty quickly. When I got the positive I went to the doctor to get a prescription for the progesterone and started taking it again. I miscarried #4 shortly after 7 weeks. My doctor and I both thought it was because the progesterone was not started soon enough so I was given a prescription for the next time to begin the day I had a positive test. I got pregnant again and started the progesterone but miscarried #5 at 6 weeks 5 days and I was starting to lose hope. I went back on the vitamins and we began TTC again. Thinking back it probably would have been better to give myself a few months to heal physically and emotionally but I was determined and had the okay from my doctor.
In July 2006 we got pregnant again and everything was going smoothly. I was on the progesterone and we had an ultrasound that showed the heartbeat and the baby was growing. I was on bed rest again for the first 20 weeks and was weaned off the progesterone at 20 weeks. Everything was going smoothly. At 8 months pregnant I awoke with vertigo – fell and cracked my wrist. I was taken to the hospital and without going into too much detail I was diagnosed with possible stroke and they ran a large amount of tests and I was hospitalized.
In one of those tests they discovered I had a blood disorder called Factor V Leiden. Everything was going relatively smoothly with the pregnancy. I was having some weight issues – having only gained 10lbs and was 8 months pregnant they were checking to see if the baby was growing -which she was. I was being induced just over 2 weeks early because of the vertigo and possible stroke. Our healthy baby girl (Princess R) was born in February 2007.
Princess R – 7lbs 14oz
This is where the story starts to get a bit crazy. I had 2 more miscarriages (#6 & 7) due to failed birth control. We were not trying to have an other baby yet – however these losses were still quite painful.
In May 2007 I was diagnosed with Celiac Disease and was on a strict gluten free diet. We had wondered if that was an underlying cause contributing to the miscarriages and we’re hopeful that was the answer. I still had the constant vertigo that started in January 2007 and was seeing a neurologist for possible causes. During one of our meetings she mentioned Factor V Leiden again. That was the first time I had heard of it since back when I was pregnant with Princess R. The neurologist thought that could be the cause of my possible stroke when I was pregnant. I was sent to other specialists for that.
My husband and I were ready to expand our family again. I went off birth control in the beginning December 2007 and we began TTC again. I became pregnant the first month but lost miscarriage # 8 at just over 5 weeks. We didn’t take any breaks between that loss and trying to conceive again and we became pregnant again the next cycle at the beginning of January.
I was back on the progesterone and everything was seemingly going okay – baby was perfect. We had made it past 8 weeks of pregnancy and thought everything was going to go smoothly. We had told extended family and friends and had begun taking daily photos of my growing belly – our kids were excited.
Big P and Princess R telling the family about the growing baby
A phone call came to me a few weeks later that shattered me. The baby (Triton) that had made it to 13 weeks was “no longer viable” and he had passed away (miscarriage # 9). I was confused – I had done everything ‘right’ – I was on the progesterone, was on bed rest – everything. I was scheduled for a D&C because I did not want to deliver at home.
The OB who was going to be doing the surgery turned out to be a lifesaver to me. Another miracle that Triton brought into my life. My OB had read over my chart, talked to me for a long time about my history and pegged that I had been diagnosed with Factor V Leiden, a blood disorder that predisposes me to making blood clots.
The surgery was scheduled for April 24, 2008 and I was able to get the answer I needed. When the pathology came back it showed blood clots caught in the umbilical cord cutting off the supply to Triton. He had given me the answer and we had a new plan and a concrete diagnoses for all my losses – Factor V Leiden.
Recovering from surgery, my husband and I were not trying to conceive yet. I did become pregnant (seriously it’s like he just has to look at me to get me pregnant) the next month but miscarried again (#10) likely because I was not healed up completely from the surgery. We were both ready to start the process of adding to our family and met up with my OB again.
The new plan – because Factor V Leiden predisposes me to throwing blood clots normally and any pregnant woman’s risk of blood clots increase anyway – my chances were pretty high. This is the reason for my miscarriages, my possible stroke at 8 months pregnant – but luckily there was something we could do. I was still going to be on the progesterone for 20 weeks because I did have an issue with low progesterone – it was just not the whole story.
I continued with the basal body temping and this time added low dose aspirin (it’s a blood thinner). Once I got that positive pregnancy test – I went on the progesterone and was put on another medication called Fragmin. This medication is a needle that I inject into my lower abdomen – it is a blood thinner that is safe to take while pregnant. This medication was designed to thin my blood enough to stop me from making clots and putting me and baby at risk for miscarriage or still birth.
I injected myself with this needle every day – I was covered in bruises but everything was working. It became second nature to me. Since it is not safe to go into labor while on blood thinners I was placed on bed rest at 36 weeks because I had begun to dilate. The plan was to induce me again just over 2 weeks early – I had to be off the blood thinner to deliver but could not go over 12 hours without the medication or I would risk another stroke. So, the safest thing to do was a planned early induction.
In February 2009 our third full term baby (Baby E) was born perfect and healthy. I was put back on the Fragmin blood thinners and had to continue giving myself the injections for 8 weeks postpartum.
Baby E – 7lbs 13oz
Now, if you are still with me – thank you. It is hard to condense this story into a few paragraphs. I don’t really have a ‘moral’ or ‘message’ to this story except this is my story. It has been a very difficult and extremely painful journey.
It has taken me a long time (and I am still working on it) to accept what has happened and to begin to digest it all.
Sometimes, you lost something so devastating that you don’t know if you’re going to be able to breathe. The Band is paying tribute to the losses you’ve had. Please share with us a loss you’ve experienced (doesn’t have to be a person, can be a dream, or a pet, or an item).
We have been trying to have a baby for years to no avail. I will spare you the details, but I was approached by a potential birth mother who is a friend. She is pregnant, doesn’t want the baby, was going to have an abortion and decided she didn’t know if she could go through with it. She asked if we might be interested in private adoption.
YES, oh YES, it would be a dream come true.
I did it. I got my hopes up against all logic and warning from everyone.
My son has taught me how to live, love and grow in ways I could have never understood before. His very being keeps me going and gives me purpose. It is a love like no other.
My only sunshine
After nearly three years of trying to get pregnant, (including an ectopic pregnancy, surgery and infertility) in June of 2009 I successfully conceived. I didn’t allow myself to get too attached while I went for weekly blood draws and ultrasounds to monitor my early pregnancy.
As the first trimester passed and we saw our tiny bean grow into a perfectly formed tiny baby, the hope in me stirred and I began to let myself feel joy. Anxiety continued, however, as I underwent frequent fetal echocardiograms to evaluate the baby for a heart condition he was at risk of developing.
The second trimester came and went and his heart remained perfect; we were in the clear.
In my third trimester, at 32 weeks, I started having contractions, followed two hospital visits for pre-term labor. At home, I remained on bedrest, and made it to the 37th week.
My labor was quick and my beautiful baby boy was born perfect and healthy at 6 lb., 1 oz.
I felt the biggest relief in my life when I saw my newborn baby. This joy quickly dissolved when the OB began the repairs. I began feeling very funny. I was trying to communicate how weird I was feeling when I found I was unable to speak. Ringing in my ears drowned out the sounds and I slipped into unconsciousness.
This is it, I thought. My baby was born healthy, but I’m paying for it by dying in childbirth.
The next thing I knew I woke up on the Mother-Baby Unit. The nurses there cheerfully told me I had experienced lidocaine toxicity and my baby was with my husband in the nursery. I ached to see his face and hold his perfect body. When they returned, I instantly felt a jolt of joy and energy as I acquainted myself with my new family.
Two days later, we were discharged and went home as a new family of three. Our families had camped out at our house but we sent them home to have the space to figure out what we were doing.
The next few days were quiet but things did not feel right with the baby. I couldn’t shake the feeling that something was wrong with him. My milk came in late and my son became dehydrated and difficult to arouse.
After that crisis resolved, we received a concerned call from the pediatrician. The results from A’s metabolic screen were positive for a rare but potentially fatal disease. They cautioned us that there are many cases of false positives, but I went into panic mode. We stayed on alert night and day to watch him breathe. We had to wait for a week for the news that it was an error. He was fine.
You make me happy when skies are grey
The weeks after were full of relief, bliss and love.
I managed through the marathon feedings and fell more in love with my son each day. Parenting seemed to come naturally to my husband. I finally had everything I dreamed of. Then at 11 weeks, A did a remarkable thing: he slept through the night.
Usually a cause for celebration, this milestone marked the beginning of my downfall. I felt as though this gift I had dreamed of for so long was a mirage and could be taken from me at any moment. The lines between fear and reality became blurred.
First, I stopped being able to sleep. I felt the need to rest my hand on the baby’s chest to feel the reassuring rise and fall. I started having the most disturbing images in my head. These horrifying images tortured me relentlessly. I felt constantly nervous and on edge. I felt so agitated I couldn’t keep my body still. When I lay in bed, my legs wouldn’t stop moving.
I had the most intense feeling that sometime terrible was about to happen to my son, A. Something that I had to stop. Soon, I was having stomach problems and I couldn’t keep anything down. I started going days straight without sleeping. I stopped eating solid foods. I lost twenty pounds in a month. I became weak and fragile.
The images I’d seen before were now coupled with horrifying phrases in my head. They all involved seeing my baby hurt. I had urges to do things like bang my head on the shower wall to stop them. These urges were like the most intense itch you know you should never scratch. I felt if I didn’t give in to them, I would jump out of my skin or explode.
During the day, I had panic attacks where I felt like I was dying; my arms went numb, my heart raced, I became sick to my stomach and felt paralyzed.
At night; the baby and my husband tucked safely in bed, I started having these urges to disappear. I wondered how fast I could pack everything up and drive off before they awoke. I thought if I disappeared, my baby would be able to grow and thrive and would be better off without me.
My husband did not understand what was going on and became very angry. We fought constantly. I had to ask him to stay home from work or leave work numerous times because I didn’t feel safe alone with the baby.
Soon, I found myself unable to get out of bed. I wondered if I was dying or losing my mind. I didn’t want to live anymore. I pictured milestones in A’s life without me present. I became obsessed with planning A’s birthday party because I had the distinct feeling that I wouldn’t be around by then. The day came when I couldn’t take another second.
That was when I reached out to my Mom.
You’ll never know, dear, how much I love you
I’d always wanted to get better. For my son, for myself and for my family.
I didn’t want anyone to know what a bad mother I was so I tried to stop visitors and kept phone calls brief. I’d been refusing to take the medications I needed because they were not compatible with nursing. Having to suddenly wean my baby was like a final blow of failure to me.
After my urgent phone call to my Mom, she left work in the middle of the day without packing a thing, got on the highway and talked to me on the phone until she arrived three hours later.
She took me to the midwife, who sent me to the ER to be admitted. But because I told them I had no imminent plans to kill myself, they wouldn’t admit me. They gave me sleeping pills and the address of an urgent care psych center.
Problem was, the place was a partial-hospitalization program, which my insurance did not cover and would require me to be away from my son during the day. I felt helpless and desperate. I didn’t have any hope of anyone being able to help me. I was taking the medication, but it didn’t seem to be doing anything for me. Things escalated at home with my husband and I really feared hurting myself, so I packed our stuff and we left.
After my Mom and my sister helped me get settled in, things started to turn around. I moved in with my sister who was a huge support to me. I had family and friends around me constantly. I had the help I needed to care for A while taking care of myself. I sought help at a local center devoted to postpartum mood disorders and began to see a psychiatrist and therapist regularly.
I was given a name for what I was going through: Postpartum OCD. I joined a local support group that meets monthly and I met the most amazing and inspiring women who really get it and have been there. Their strength was contagious. I starting believing that I could get better.
The horrible thoughts in my head started to disappear. I felt more connected with my son. I still had some panic attacks where I felt myself regressing and dark thoughts would again invade my brain. Sometimes, I felt like I wasn’t getting better at all and there was no point to struggling through it.
But I learned to reach out to those who cared about me when I felt this way. During my darkest days the phrase “this will not end well” would repeat itself in my head, this mantra was now replaced by “this too shall pass.”
Please don’t take my sunshine away
Time, therapy and medication have given me my life back. My recovery has been full of ups and downs; good and bad days. I am still working on mending relationships. But as the autumn came, I felt my old self emerge.
I will never be the person I was before I had a child, but I am a stronger, wiser woman. I have found I am strong enough to make it on my own, but that the support of others is essential. I am learning to enjoy the moments without obsessing about what will come next. I am learning to let go of complete control and let my son explore and experience with my guidance.
It’s a new way of living, and it’s very freeing. I am able to enjoy every day with A. He amazes me on a daily basis. I don’t know what challenges or heartaches I might face in the future, but now I am healthy and strong enough to face them head-on. And if I’m not, I will still be okay because of the support system I have.
And in February, I will be at my son’s first birthday party, celebrating his year of thriving and mine of survival.
Every month, I hoped that I was pregnant. Despite endless ovulation predictors, pregnancy tests, and prenatal vitamins, I never was. I just knew that I was pregnant during my cousin’s baby shower because I was a whole five days late. I was not. I started my period during the baby shower. I cried in my car alone the whole way home.
After two-and-a-half years of trying to have a baby the old-fashioned way – you know, by relaxing – we turned to science for help. Extensive tests and a passionless affair with a tool we called the dildo-cam (wand ultra-sound) determined that my husband’s swimmers were on, as he so eloquently puts it, on sabbatical. Our doctor felt that IVF (in-vitro fertilization) with ICSI (intracytoplasmic sperm injection) was our best bet at baby-making.
I was shocked. After all the single lines on the pee stick, I never thought I would see two. I am not an optimist. That mother fucking glass is half-empty because some slag took a big gulp from it when I was taking a pee on one of the endlessly negative pregnancy tests. I didn’t even pee on a stick until after I had my blood drawn at the doctor’s office to see if I was pregnant.
I found out I was pregnant in a Fred Meyer bathroom across the freeway from our clinic.
Holy hell was I sick. I was not a beautiful, glowing pregnant person. I was a lanky-haired puking pizza-face. I puked starting at six weeks and didn’t stop until the day I delivered. I even puked when they were sewing me up from my C-section. For all the trouble I’d gone through to get pregnant, I’d hoped for an easy pregnancy.
During an obstetrics appointment, my doctor heard one of the babies heart skip a beat, which freaked me the hell out and warranted an appointment with a heart specialist within the week.
The visit with the heart specialist was short and sweet. It turned out the skip was in my daughter J’s heart and was chalked up to a momentary “short circuit in her electrical system.” So, in essence nothing to worry about, crisis averted for now.
Other than a brief stint of pre-term labor at 34 weeks, which put me on house-arrest, everything went smoothly until delivery day at 37.2 weeks.
The day I heard the most horrible sentence ever: “there’s something wrong with your baby and we don’t know what it is.”
I had a scheduled c-section at 37.2 weeks. Things went well at first. The doctor first pulled out Baby A, my son G, giving him a black eye in the process because he was lodged deep in my pelvis.
Next came Baby B, my daughter J, and the room went silent.
I didn’t notice this until a little later because I was busy trying not to throw up as they put me back together. I did not succeed.
In recovery, where I was shaking like an alcoholic coming off a three-day bender, a nurse asked me if anyone had told me about my daughter. She went on to tell me that there was “something” wrong with my daughter but no one knew what it was and they were trying to figure out if they were going to have to emergency transport her to the Children’s Hospital sixty miles away.
I had no clue what she was talking about. My recovery nurse shot daggers at the big-mouth as she called the anesthesiologist for more anti-shake drugs, which is the technical term according to my redneck ass, because the shakes kicked into overdrive again. The on-call pediatrician came into the recovery room and said basically the same thing as big-mouth, and added that my daughter had some sort of skin covered tumor the size of lime on her tiny 5 pound body at the base of her spine. The pediatrician had a call into Children’s to find out what to do because she had never seen anything like it.
Because her tumor was covered with skin, she didn’t have to be transported, so she stayed with us and was able to come home. Two weeks later, we went to Children’s to find out what was wrong, little did I know it would take six months and three neurosurgeons to identify what her defect was and what to do about it.
At the two weeks of age appointment we found out she had a neural tube defect (NTD).
We were told that she had one type of defect called a myelocystocele (hernial protrusion of spinal cord through a defect in the vertebral column) only to find out that she had a different kind when she had an MRI at six months of age. If really sucks to think your kid has one thing and to have made your peace with it to find out it is something else.
At six months of age, we now had an official diagnosis of lipomeningocele: which is a fatty tumor that attaches to the spinal cord, tethering it and not allowing it stretch as the child grows it. Lipomeningocele have a 1-2/10,000 occurrence rate.
During the MRI we also discovered that she has a bony defect in her left ear called an enlarged vestibular aqueduct that could cause her to go spontaneously deaf in that ear. I lost faith in the neurosurgeon that made the initial diagnosis, so I made it my mission to find the best tumor neurosurgeon in the country and I did.
I found him at Johns Hopkins and sent him J’s records. He agreed with the diagnosis, but not the treatment plan of the original neurosurgeon.
The original neuro, we call him Dr. Asshole around here, wanted to wait until she showed symptoms of nerve damage. The nerve damage symptoms, which are irreversible, include loss of bowel and bladder control and mobility; anything below the lesion could cease functioning. Dr. Johns Hopkins told me to call up his colleague Dr. Awesome, who was the head of neurosurgery at our Children’s Hospital. Dr. Awesome used to be the head of Johns Hopkins.
If I hadn’t been in such an unbelievable fucked up state of, oh my god I have twins and something is wrong with my daughter and how the hell do I do this? I am sure I could have figured out who the best doctor was, but I didn’t and I am glad that I had someone do it for me.
Dr. Awesome is the man.
He basically looked at me, blinked a couple of times and said, “We’re doing J’s surgery as soon as we can get the special instruments from the university.” There was no waiting to see if she would have nerve damage, it was take action now. I love Dr. Awesome. Yes, he is a typical neurosurgeon, so he lacks a little personality, but he’s a great doctor that does not fuck around.
J had surgery at ten months of age and did amazingly. The 4.5 hours she was in surgery were some of the most terrifying of my life and she had to stay in the hospital on her stomach for five days, which was not so fun. She had learned how to stand the week before her surgery and that is all she wanted to do. Did I mention she is also a crazy maniac? She broke the Styrofoam board that held her arm straight for her IV and ripped it out, then they put it in her foot and she ripped that out too.
At two years old, J has full use of her legs, with only slight nerve damage on the left that hasn’t caused any issues yet. She may be looking at a leg brace at some point, but we will deal with that if it occurs.
She has seven specialists that we see every six months that track her progress. They’re all impressed as hell with how well she’s doing. Her left ear does have some slight hearing loss in the low tones, but it’s another thing we just watch.
We watch a lot. I check her toes every morning to make sure they aren’t curling under. I analyze her walk several times a day. I am obsessed with her bowel movements and how much she pees because bowel and bladder function could be the first to go.
I repeat the mantra “life altering not life ending” to myself every night. I cry almost every week. I am thankful for the people that have been there, that have let me talk or not talk. That banded around me from all over the country to help me breathe. I try to stop worrying about the future. It is the hardest thing for me to do.
I worry school and questions about the huge scar on her back. I don’t want to have to explain why she can’t head a soccer ball, be tackled or slide into first base. I don’t want this for her. For a long time I felt like I caused this by doing IVF. It sounds insane and my therapist helped me see that. We spend at on average two days a month at Children’s which helps put things in perspective for me. Seeing a mother carrying a plastic tub for her teenage daughter who has a scarf wrapped around her head is a big slap of reality.
So why is my Friday child confused and behave as though he’s Wednesday’s child instead? B doesn’t stick to the old English poem. He got confused along the way. I know exactly when that was. When he was twelve days old and caught the dreaded meningitis.
That was the worst of times.
We were told he wouldn’t survive the night, but he did. We were told he would never recognize us or smile or manage any basic functions, but he did. I won’t bore you all with the setbacks, the heartache every night, the months spent in hospital, how none of our friends visited, the long, drawn-out wait to get home.
Those are for another time. Maybe.
This post is about now, this minute, how I am feeling. I have never written anything like this down before, but I am an avid follower of Aunt Becky and she told me to, in all her posts about Band Back Together.
I don’t know how to make this a nice flowing post rather than a list of illnesses, surgeries, appointments and setbacks. I suppose I’m having this issue because that could be how you would sum up B’s life so far. I know that’s how others see him. When we meet for a Girly Catch-Up date, it’s never, “how are you all?” it’s “what’s B having done now?”
My friends are great but I’ve been labeled The Coper; or she who deals with all that life throws at her. B is labeled as ‘poor thing.’ Not a great label for an intelligent, reasonably active eight-year old. We have settled into this comfortable way of coping that I don’t know how to let people know that sometimes I am not coping very well.
Maybe Band Back Together will be the friend’s ear I can bend.
Anyway, back to my child of woe.
We were lucky to get pregnant with B and we were lucky to have a nice ‘normal’ pregnancy. B was born on his due date and then things started to go wrong.
B was labelled with Torticollis and Talipes within the first few days of his life.
It threw us but we had just come to terms with all of that when B caught the dreaded Meningitis, caused by late onset Group B Strep. Again, not to bore you with that hell of a first 6 months, B managed to cling on and then thrive. He was considered a ‘floppy’ baby due to, what we figured was the brain damage caused by the meningitis, so all his milestones were delayed. He also couldn’t work his muscles properly, including swallowing, so B was fed through a gastrostomy.
When we thought we were through the worst year of our lives, we were hit with another side swipe, B’s hip was dislocated and deformed, it needed immediate surgery. That surgery was deemed successful and so we carried on. We even began to relax a bit and focused on having some more children. B still had some problems, mainly with his muscles, but we had got him off his gastrostomy and, again, he was thriving.
So, we relaxed and concentrated on other issues, such as my infertility and the long rounds of IVF, but again another story for another time.
During these years we were eventually blessed with twins Z and E. All seemed well in our household, the girls were healthy and B was doing well.
Then, when B turned 6 we were knocked over again by the diagnosis that his hips weren’t right still. So major surgery followed, which involved B being in an hip spica for 8weeks (not great for a 6yr old boy and a mum who also has 2yr old twins to look after) and wheelchair bound for many months more.
However, we all survived, well I am a’coper’!
B was just beginning to get mobile again when a doctor noticed his face was looking wonky.
A year of maxillofacial appointments followed which ended with us being knocked over again by the diagnosis of Juvenile arthritis. The arthritis had been attacking his jaw joints for some time unnoticed and had now deformed them to the point of major facial surgery required.
However, they cannot do this while the Arthritis is active, so cue major arthritis drugs. Now B has to have weekly injections, for years, that are lowering his immunity, great.
However, we are coping!
Now factor in his hips update as well last week and we are cooking! B’s hips have, again, grown wrong and further major surgery is required, probably in January. Again my lovely son will be wheelchair bound because of his hips, injecting for his arthritis, struggling to eat because of his jaw deformity and tiring due to his muscle issues. Again, I have taken on this diagnosis and have dealt with it and I am prepared for it. What I didn’t expect was for his orthopaedic surgeon to say that things don’t seem quite right with B’s muscles and they seem to be getting worse.
Well, yes, he has hypotonia from the meningitis. obviously his muscles are not right.
That is not what he meant, the surgeon knows of B’s past history and thinks there is something else affecting him.
So that is why my gorgeous, bright, loving son is now being tested for Muscular Dystrophy and the medical view is that he probably does have it.
WHY?? I mean, hasn’t B gone through enough?
Haven’t I gone through enough? Haven’t all our family gone through enough?
B has, at the moment, hypotonia, hypermobility, hip problems, arthritis, jaw problems and now possible MD. Any 1 of these diagnoses would upset a parent, my son has all of them.
I am not coping any more, outside it looks like business as usual, but inside I am crumbling. I look at my friends’ children and, selfishly, wonder if I can pass on just one of B’s problems to them. Why did he get all of them? Even the doctors can’t believe how unlucky he has been. When friends worry about their child’s broken wrist, I think that I wish B could do cartwheels and break his wrist like that as well.
Then I feel bad for not having sympathy for them. Then, I overcompensate for my guilt by offering help and being the friend they can always turn to. They take that help because they know that I am a coper whereas they aren’t. They make half-hearted promises of help in return but, they have their own families to look after and B and I would need too much help. My hubby is pretty hands-on with the house and the kids but he has never been to a hospital appointment with B, never.
I feel it is B and I against the world sometimes.
So, there you have it, my child of woe.
This has been quite therapeutic, I feel like I can now go out into the world and carry on ‘coping’ again.