Thursday, February 10, 2011

A diagnosis nobody wants to hear

I've been holding out on sharing this, because I didn't even know where to begin.

Ada was diagnosed with mild cerebral palsy in the fall. Shockingly, she must have had a PVL (brain bleed) the neonatologists were not aware of. Yet, her cognitive function is thankfully unaffected. She is one smart little kid. Receiving this diagnosis was the hardest day of my life. And I don't say that lightly, given the many crappy days I've had the past few years with IF, Endo, HELLP, a hematoma, shingles, mastitis, etc.

It sucked the life out of me, and in many ways, I am still coming to terms with it, and will probably be processing what this truly means forever. Initially, I just sobbed for days, but had to pull my shit together to function at home and at work. I often cried on my way home from work, because it was the only time I had to myself, the only time I had to think. Probably just was well, or I would've been a train wreck, had I allowed myself to spiral into more self pity and more guilt.

Because in many ways, this is my fault. There is a higher risk of CP among triplets. Who knows what went wrong during my pregnancy, her birth, or her time in the NICU. But if we hadn't had to resort to ART, she wasn't a triplet, and I had carried her longer, this most likely would not have happened.

It took me many months to tell my closest friends. I didn't know what to say, or how they would react. I didn't want anyone treating her differently, pitying her, or worse, limiting her with what they thought she could or couldn't do.

I was already feeling utterly defeated, overwhelmed and inadequate to raise triplets, let alone a child with additional needs. I was barely coping with their PT and speech therapy, the eval appointments, and all the scheduling, that both the practical aspects and the emotional toll was just too much to comprehend.

I think anyone with multiples, and anyone with a special needs child can relate to the level of overwhelmedness one feels every day. That's a sort of crazy baseline we just all get used to and learn to deal with. It just never lets up, despite the infinite happy moments, and much fulfillment. It is a struggle to keep feeling like you're being a good parent despite the utter exhaustion and demands on your sanity. But the combination of Ada's diagnosis and having 3 teething toddlers who are still not sleeping through the night, pushed me beyond what I thought I could handle.

Yet, I am continuing to fight for her. To get her the services she needs. To work with her on each and every one of her therapy goals. And as I've had time to process the news, and as she is making strides, the diagnosis has become less painful to face.

But it is not over. Tomorrow, we head to the neurologist with Julia and Emma. Tonight, I am praying that they will be spared similar diagnoses. If you're reading this, please let me know you're out there.

18 comments:

Alicia said...

I'm been reading your blog for a while now. My daughter was born october 09, so its been interesting to read the different yet same challenges.

Having said that, I don't know whats like to be the mother of triplets or a special needs child. But I do know that being a woman we are strong. You can get through this struggle. Will it be hard? Yes. But you can get survive it.

Don't beat yourself up thinking you gave it to her. You gave her a life.

I will pray for your dear daughters and family.

mybumpyjourney said...

{{HUGS}} I know that you are going to be everything that Ada needs- and more. I have been following you since the beginning (although I have been a terrible commenter lately), and I see such a strength in you. So much love. You are a fighter, and I am sure the girls will see this in you. CP is such a unique diagnosis- but I don't think it is limiting.

I think another factor in Adas favor is the fact that she IS a triplet. Her sisters will be there to support her, encourage her, and push her to try her best. I think that is some of the best OT a gal can get- playing with other kids and seeing them do stuff.

I will be sending good thoughts up for you and the girls. Cry when you need to, and don't be ashamed of your tears.

XOXOXO

BB said...

Oh my dear! I am shaking reading this... With a "possible" similar (not same) situation arising out here... I can completely understand where you are coming for.

Our kids deserve nothing but the best, and I am praying hard that they all live a normal healthy life as there can be!

Loads of hugs and kisses to the gals.

Lisa said...

I am reading and hoping beyond hope that you don't receive the same diagnosis for Emma and Julia.

Thinking of you and your beautiful family.

Jessica R said...

I'm so sorry to hear of Ada's diagnosis. I've been reading for a while (I found your blog through another IF blog) but I think this is my first comment.

I would never, ever think that this is your fault at all. Maybe it's a result of her being a triplet, and maybe it isn't - but that's not something you chose for her. God gave you these three sweet babies, all at once - and with this enormous blessing come many extra challenges, but those are not of your making. This ISN'T your fault. It isn't something you chose to inflict on your children.

I think you're doing an amazing job - your three girls are making such incredible strides, and you're a fighter. You've survived and conquered some major hurdles in conceiving, carrying, and raising these girls, and I know you're up to the task of this challenge as well. Sending hugs and prayers your way :)

Jane said...

I've just come over from A Little Pregnant and haven't read your blog before. I just wanted to say though that you sound amazing, that your family sound amazing, and that you will get through this. You are in no way to blame for your daughter's diagnosis.
I've added you to my blog reader, and I look forward to following your progress.

Amber said...

I'm so sorry to hear this. Hope the appointments go well for the other two girls. My boss's daughter was diagnosed about a year ago with CP as well. I see the strain it has put on her schedule so I can't imagine what it has done for yours. I'm sure you are doing everything you can to help her.

Like Alicia said...don't beat yourself up. You didn't know this would happen.

Jessica said...

I'll be thinking about you! I have twin baby girls. One of my daughters is very far behind in both motor, speech, and cognitive skills. She is in early intervention and physical therapy. It is hard... everyday. They say that she is doesn't have any diagnosable disorder and in some ways that makes it worse.

Praying, praying, praying...

It goes like this... said...

Oh dear. Oh, my friend, I am out here and I am sending all the good thoughts and love that I possibly can.

You are such a strong momma. And a GREAT momma. Truth be told, I compare myself to you and try to live up to the standard you set! Seriously.

You cannot blame yourself. You just can't. (I know that is easy for me to say).

((BIG HUGS))
(((HUGE HUGS)))

Eva said...

I am reading. I will think of you tomorrow! And whatever the doctor says - you are taking the same children home after the appointment that you brought in before. And from what you have written they are wounderful little girls!

Michele said...

I'm here. Always. And, like you, I've worried from second one what the drugs I took to get pregnant and stay that way, the bed rest and lack of exercise on my part, the gestational diabetes, and ultimately the preterm delivery at 27w and only being able to breastfeed for 3 months will have on Bobby and Maya. I feel blessed every single day and hold my breath at every single doctor and developmental assessment... waiting for the shoe to drop, grateful for the "on target" response, and worried about the next visit. Because, really, some things take years to show up (like autism). I worry... But like Alicia said, I try to focus on the most beautiful thing of all: life. Their lives. What we are because of them and with them. Ada has a new label (like that of beloved daughter or triplet sister) but she is no less wonderful and special. Some of our disabilities are easily hidden, others not so much, but we all have them. You are a wonderful mother to a wonderful daughter (3 of them!!) and wonderful wife to a wonderful husband and father. Dont beat yourself up.

If you ever need to talk, I'm here. ALways.

Shelly said...

I have been following your blog for awhile.......I am an elementary principal who sits in on many Help Me Grow (HMG) meetings regarding infants, toddlers and school aged students with therapies. Wanted to share that I think it is wonderful that therapies have started early (and a diagnosis)....the earlier the better!.....and she is a little smartie to boot! She will learn not to let physical issues limit her....especially with wonderful supportive parents like you! And....you need to stop blaming yourself! Giving her life was a blessing....even when shared with two others! Hopefully hearing from someone on the other side of therapies and education will help to give you peace of mind to know that no one is judging or placing blame and will continue to offer support and help.....and those offering therapy and education will relish the baby steps in the learning process right along with you! Hang in there, stay tough and ADVOCATE, ADVOCATE, ADVOCATE for her! Nothing excites me more than an educated parent advocating for their child(ren)!

Kahla said...

Sending so many prayers your way.

BB said...

Waiting for your update hon! Hope things went well!

callmemama said...

I'm so sorry to hear this!

You gave her life - a wonderful thing it is, too, to just EXIST, and you did nothing wrong, nothing to cause this.
You are a fantastic mother, so strong and so loving. I know this is so difficult for you, but you're doing everything you can to make sure she has everything she needs to have a wonderful life!
Thinking of you and your daughters, and hoping your appt today went well...

Katy said...

Here via Julie's blog. So sorry to hear of your daughter's diagnosis. So heartened to hear the strength in your words. Best wishes.

'Murgdan' said...

I'm here. I may not have the experience of this situation, but I know from what I've read all the way through that you are a strong woman who will fight every step of the way for her children. Thinking of you as you move forward on this never-ending journey.

Twingle Mommy said...

My son was diagnosed with CP in August at 8 months. I cried for days and days too. But like you, I finally got up and realized that my son needed me to help him. At first I was so angry for the early diagnosis because I wished I had more time to be a mom to a "normal" baby. Now I realize how lucky I am. He is making so many strides and that would have never happened if we weren't in therapy.

Hang in there. I find that video taping his progress helps me. Whenever I get down I watch him from a few months ago so I can see what he couldn't do before. I think it's hard that he's a twin because I can see the difference between them. But then again, he has a model to keep up with as well.