Adding my vent

jbranden12

It's been a rough couple of weeks. Anna's been teething and the somewhat normal sleep I was getting is no more. She also vomited this morning after days of fussiness, so perhaps I accidentally ate something with soy earlier in the week. Ugh.

More than that, I am just so sad about her development. I try hard to focus on small improvements, but she had 16 therapy appointments in January and she still can't push up on her hands, roll, sit up, or hold anything in her left hand. This week I've finally come to the realization that it will be many, many months or even years until she walks, if ever. I am just feeling really low. Last night I found myself wishing she were never born. To be fair, it's because I wished she were my first daughter, Patricia. If Patricia were alive, Anna probably wouldn't have been born. But it still got to me because I always wish Patricia were here but rarely wish Anna were not.   

DH and I are not doing well. It's just too much. He is a stay at home dad as well as full-time student, and two weeks into the semester we are already burned out. Thankfully my job is not too stressful, although I am nowhere near satisfied with my career. It all just seems so pointless right now. 

Sorry, just needed to get it out. 

jbranden12

Thanks, @bromios. I attended a few counseling sessions last summer but it got to where the stress of missing more work or time with Anna to get the appointments outweighed the benefit. I may try again if we can get a good routine for the semester. 

Thanks for the good thoughts! 

LaciJaxx

T's and P's!!!!

PurpleIris30

I just wanted to say that I'm sorry you are going through all of this.

KTZ17

I'm sorry you're having a rough time. Hugs.

Kelly_12

I also have no advice but sending my good, positive vibes your way! I agree with counseling, you should definitely try to make it a priority. For yourself and your marriage. Dealing with all that you are is a lot on a relationship and it's only natural that you two would be struggling. Reach out for help and try to keep communicating! Goodluck!!

JoJoGee

The first year or so was the hardest for me.  I kept thinking "If I could just get Lily to do XYZ, I won't be a failure as a parent."   Before Lily, I had 2 miscarriages, and Lily's birth seemed to bring a lot of my emotions about those to the forefront (those "What ifs" and "If Onlys" are killer!).  Of course, looking back on it now, those thoughts were completely irrational.  But, we can't always (if ever) control how we feel.  

I remember going through the same realization you are having now.  I sat down with my minister and when I told her that I was afraid Lily would never walk, she asked me "Why does that scare you?"  Honestly, I didn't know.  And, I don't know if could answer that question today.  Certainly, somewhere in that answer is the fear that Lily will never be 'normal,' and things will never be 'easy' for her.  But, over time I've realized that in some regards, that is a blessing.  She will know, at a very young age the power of hard work and the resiliency that comes from being unique.

Are you looking into a diagnosis for your daughter?  That helped me a lot.  I suspected my daughter had CP for a while.  But, it wasn't until we got the diagnosis that I finally felt like I could be a mom (as opposed to a nurse, a PT, an OT, a SLP, a dietician, etc.).  The diagnosis allowed me to say to myself, "This is who my daughter is.  I can do nothing more than to help her be the best version of herself.  If that means she has to use a wheelchair, then she'll use a wheelchair.  I will not let her feel as if my love for her is contingent on her abilities."

It is hard to be where you are at.  And you have the added emotional stress of having given birth to a sleeping angel.  I agree with everyone here that counseling is a wonderful thing (I used it for a little while after one of my miscarriages, and after Lily's first year of life).  I would also highly recommend date nights.  I cannot say enough about the benefits of having some time, alone, with your SO.

Just one final note:  I've noticed that Lily has peaks and valleys in her development.  It's wonderful when it is peak time.  And, when we're in the valleys, well, I'd be lying if I said I didn't worry or feel down.  But, overall, it is wonderful.  Little milestones become big milestones.  Today, Lily anticipated a question and answered appropriately.  To me, that is huge!  And, I find that I am blessed to see simple miracles most days... a small change in her gait, a new word, a slightly better pronunciation... all miracles.  And, when a big miracle hits and she finally reaches one of those big miles, well, it is truly something to behold.  

You are in the midst of the storm right now.  I can't tell you when that storm will be over.  But, once you are through the worst of it, there sure are some beautiful views to behold.

jbranden12

Thanks for sharing your experiences @JoJoGee . She doesn't have an official CP diagnosis yet, but only because her neuro wants to wait a bit. Right now it's just "mixed development disorder." I hope she will be affected only/mainly on her left side, since her grade 4 bleed/pvl was on the right. However, she did have a grade 2 on the left and hydro (shunted) so both sides could be affected. 

I think we are in a valley right now, but I am trying to stay hopeful. Her therapists are hopeful and her neuro said he believes she'll walk, so I'm holding on to that. I don't think they say that lightly? Usually it's just "we don't know!"

@BostonKisses2 you are right and I need to stop making excuses for taking time for our marriage. Every time I consider date night or a night away, all I can think of is how I'll get the milk replaced in the freezer, where we can go that I can avoid any trace of dairy or soy, and how much homework time DH will miss. It seems like it's not worth the stress, but I know it is. 

JoJoGee

jbranden12 said:

I think we are in a valley right now, but I am trying to stay hopeful. Her therapists are hopeful and her neuro said he believes she'll walk, so I'm holding on to that. I don't think they say that lightly? Usually it's just "we don't know!"

They don't say that lightly!  In fact, I was just talking about this with another Special Needs mommy.  We were joking how doctors always seem to give us the worse possible scenario - "It is possible she may never walk" - so, that way, we are pleasantly surprised if anything does happen.  If her neuro thinks she will walk, that's a big deal!

jbranden12

@JoJoGee yes, our neuro is kind of a character. When Anna was in the NICU he said "She may never walk, talk, eat, or interact with you in a meaningful way, or she may be the clumsiest kid on the soccer team." After her 9/6mo MRI, he said "Will she be a left-handed pitcher, no. Will she walk by her birthday, no. Will she walk, I think so."