Being a mommy of a child with special needs and a student

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my husband and i wanted children very much, we went through several unsuccessful ivf attempts before deciding to adopt. our youngest child, "little d", is 6 years old. we made a birthplan with his birth mother when she was 20 weeks along. the pregnancy went smoothly, prenatals were great, until we received a call on a sunday in the middle of the night. our son was born prematurely at 27 weeks, weighing in at 800 grams.

when we were finally discharged from the nicu, my life revolved around caring for my new baby. he wasn't meeting milestones and was diagnosed with cerebral palsy (spastic quadriplegia) just before he turned a year old.

his life has always been a good one, he's such a happy child. he's so much fun and it is truely a gift to parent such a great kid. he's in a wheelchair and cannot do a lot of gross motor skills (sit up, walk, etc.), but it's okay. we've always worked around it and we make the most we have with our little d. despite his physical disabilities, he's so smart. he's articulate (sassy), can count, knows some spanish and sign language and is learning how to play the drums with his functional left hand. i know i'm his mom, but he is just an amazing kid. everyone who knows him just loves him.

he had an appointment with his physical medicine specalist yesterday. in the past month, i've noticed that his left leg hasn't looked quite right. as the physician was performing his physical assessment, his face changed when he got to his hips. we went for an xray immediately and came back to speak with the doctor. my little d has what the doctor said as "severe hip dysplagia".

we are being referred to an orthopedic surgeon and will probably have an appointment next week. the physical medicine doc said that little d would probably have to have a femoral osteotomy. from the literature i've been able to find, this isn't a simple little outpatient procedure. it's quite extensive. and it's happening to my son at the tender age of 6.

i am just crushed. i can't stop crying. i feel an incredible amount of guilt; there have been days when i've been late coming home from clinicals and had not done his pt exercises at home. there have been times when we've been out and have missed his afternoon medication. even though my children are #1 in my life, nursing school has consumed such a great deal of my life and energy.

my husband am i also lost a daughter before little d was born. she was also adopted and her birth was wonderful and we all thought she was a beautiful, healthy baby girl. at her 8-day well baby check, her pediatrician heard a murmur and sent us directly to children's for an echo. we thought everything was fine-- babies have heart murmurs all of the time, right? well, not in this care. she was diagnosed with hlhs and her patent ductus arteriosus was beginning to close. she had to the first step of the norwood (open heart surgery) the next day to save her life. she passed away when she was 5 months old due to rsv with complicated her heart defect.

my husband and i stayed up almost all night last night and talked about our options. he thinks i should go on and begin fall quarter on wednesday (i have 3 quarters left of my adn program). little d begins kindergarten on monday.

i just feel so torn on what i should do. i know if i stayed home and choose to drop out, i'll be at home alone with little d in school and i'll ruminate all day. if i do begin fall quarter, i may have to drop in the middle of it, depending on what the orthopedic surgeon says.

thank you for reading if you've gotten this far. nobody really understands. i'm just so scared.

always,

dani

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Specializes in Family Nurse Practitioner.

Hi Dani,

Wow your little man sounds so special. Did you see Last Comic Standing last season? A fellow named Josh Blue with CP won and he is such a positive role model.

I don't have any first hand advice but my thoughts are to at least start the semester. Hopefully you won't have to drop. If Mommy is happy and fulfilled the whole family is better off.

Sending best wishes and hugs, Jules

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my heart goes out to you and as a mother , i can feel you dilema and ache. I think you should continue with your school as it seems you have a strong support person in your husband. Besides you don't know what the doctor would say. Things might seem so overwhelming at first, but there is always a solution at the end. I'll keep you and your son in my prayers . you have come a long way to give up. All the best

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I have three children and I can say that I have had the mommy guilt.

The only advice I can give is to take it one day at a time. Start classes and see what happens from there. With him in school it may go much smoother than you had thought it would.

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Specializes in Nephrology, Cardiology, ER, ICU.

Hi Dani - what a special Mom you are! Please continue with school. If you have to have some time off, then deal with it. It may be that your son may not require surgery ASAP - it could be sandwiched into your Xmas break? Maybe?

Anyway - want to wish you the very best.

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thank you all so much for your replies. it felt so nice to just sit down and write the post out. after i posted it, i went and grabbed little d from playing and took him into my bedroom, turned the ac up a notch, fluffed his daddy's pillows all around him, and we read books until he (we, haha) fell asleep. after 4 hours, we woke up. i don't think i've ever had such a nice nap!

i really do feel better about the situation-- in just a matter of hours. i really do appreciate all of your kind words. i'm going to go ahead and begin classes on wednesday and go from there.

:icon_hug:

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Specializes in Pediatrics Only.

danibanani-

I PM'd you - please check your inbox.

-Meghan

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Dani, wow! You are one awsome person. I work with children with all kinds of disabilities. Many with CP, on vents, trachs, g-tubes. I work at a place that takes care of special kids who are too sick to go to school or day care. We are staffed by nurses and every type of therapist in the book. I see how hard it is for some of these parents. I love their kids soooo much. I am a mom too,he's 2 1/2. I know that if it's in your heart, you can do this. Do it for him. He will be going to school and if he could express it and understand your education. I'm sure he'd be proud. I don't know the extent of his illness but I know the beautiful eyes he must have(only special kids have these special kind). If you ever want to vent or talk, let me know. I love people and love children. Somtimes life and school is hard and overwhelming. It feels good to be able to communicate with some one who can understand, or relate to you. Email me or PM any any time!

Tara 28yrs old Semester 3 of 4 ADN program

Future PICU nurse!

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Specializes in Pediatrics, High-Risk L&D, Antepartum, L.

My advice is that you never know what tomorrow will bring. If we held back on things knowing that tomorrow could bring a change we would miss out on so much.

I applied for nursing school in November/December 2003. My daughter was a couple months old. I was kind of hoping to start 2004 but it was full so was accepted for the 2005 class start. During the summer of 2004 things just got crazy. My daughter was having health issues and there was just so much going on that wasn't expected. I thought about just not going in 2005 because things would never really settle down 100%. I stayed with it and I hope to graduate this coming July.

The truth is things did change. Sometimes things ease up and sometimes they go nuts again. Each person has a differently ability for how much then can juggle. I have had people tell me the couldn't live my life because of all the running and appointments and so on. I get comments now about how people don't know how I do it. I'm used to it. This is my life.

We learn to adapt. Having special needs children doesn't mean we aren't capable of doing everything...we just do it a little differently.

You can't put life aside for the unknown.

I went into school with an unknown medical condition. I couldn't put life aside until somebody figured things out. I'm 31 and had this problem since I was a toddler. If I waited I could have spent my entire life just waiting. I did get an answer recently though...all these years and it's something as simple as epilepsy. I say simple because let's face it...it's not an uncommon thing. It just took one person to figure it out.

The unknown shouldn't change things...you just keep moving forward and deal with the new challenges as they come.

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Hi Dani -

I DO understand your situation. I am mom/FT nursing student mom of 9 yr twins who both have Spastic Quad CP. They also have a sister who is 8 yo and I went through a divorce 3 yrs ago as well, after 11 yrs of marriage. My girl twin had bilateral femoral ostomy surgery 2 yrs ago and I won't sugarcoat....it was a LONG, stressful recovery...but you can get through it. Also, don't guilt yourself for being late with PT, meds, etc. It happens, we are parents, not superhumans!! Being late with some of his therapy sessions did not cause the hip subluxation, CP did! I know how hard it is and it sounds like you love your child very much and you are doing everything you can to give him a happy life.

As for nursing school, if you have a good support system and determination, you can get through it. I am proof of that as I am graduating in 96 days with my BSN and job offers in hand, while single parenting 3 children, 2 of whom have significant special needs. That being said, I was not able to do it w/o help from my mom, my ex-husband, and a couple of great college special ed students. Obviously, your son is your first priortiy, but I say if your husband is supporting you to start the semester...you should consider doing just that.

PLEASE feel free to write me if you want to talk or have more questions.

DBev

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Dani, you are MEANT to be a nurse!! You are in the thick of some pretty big challenges right now and I know how it feels. I've got some similar things going on in my family as I begin nursing school. Just hang in there. Try to enlist help from family and friends whenever possible and keep pressing forward. ONE MORE YEAR and you will have tons more time to spend with your little guy!!

Remember: One day at a time. As long as you are doing your best and accomplish a little more than you did the day before, you are on the right path.

You are a great mom! Thanks for all your posts and cheery disposition. I have learned alot from you! 1.gif

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Hi, just wanted to add my two cents

The good Lord willing, I will graduate in May. I have a 15 month old with severe disabilities and a seizure disorder. I also go through the guilt of thinking that I should be working him out..doing something for him instead of studying. But, if our family wants to have a better life, I need to get through school. It is very hard, we have 2 more children. Our special little boy is in the hospital right now. (He has spent at least 10 weeks of his life in the hospital.)

He will probably need my nursing skills later in life, I know what little I do know have come in handy so far.

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