Bella walking in her kid walk and laying in her crawl trainer

The above video was taken a month and a half ago.  She is taking individual steps much more now, but she walks on her tip toes with her knees bent because she can't stand for more than 30-60 seconds. We just found out from her new physical therapist that she walks on her tip toes not because of the kid walk, but because she has high tone in her lower extremities.  So now we are working on stretching out her muscles.  Hopefully it works!

Bella at 4 months

These videos are for a friend who was curious about Bella's ability to hold her head up at 4 months.  The above video was taken on her 4 month birthday, the one below was taken 11 days later.  She hadn't had any hospital visits (other than 1st week in NICU) or surgeries/procedures at this point so there was nothing preventing her from being on her stomach.  She wasn't a fan of being on her stomach, but mean Mommy kept making her :).  I can't remember when exactly she learned to lift her head, but for some reason she has always been better at it when she is laying on her stomach.  Whereas now when she is walking in her kid walk she constantly holds her head to the side or lets it drop.  I'm not sure why that is.  I hope these help!

 

I am having a bad day today....

I am having a bad day today….

And if I allow myself to be honest I would say that I have one of these on average once a week.

Days where my heart hurts so much that I have to will myself to breathe.

I have not written on this in a few months because I knew when I did it would be to say this and I didn’t want to admit to feeling this way.  The last couple of months have been filled with my daughter’s doctor’s appointments, open heart surgery, kidney deflux procedure, tests, PT/OT/ST, illness, and a UTI. 

I am one of those people who try to appear positive about my situation because I don’t want to bring anyone else down, especially not someone who is going through the same thing as I am.  I want to be uplifting and encouraging; I want to praise my life and my gift from God.  I want to do these things, not so that people will think my life is perfect, but so that I won’t have to hear the judgment from other people.  So I won’t have to hear comments like “God doesn’t give us more than we can handle” because the reality is that that is not true….it has nothing to do with how much we can handle, we handle these things because the alternative is to die and our survival instinct is just too strong.  I am not saying that God does not do amazing things, because I believe he does, but placing Emanuel Syndrome in my life is not one of those things.  God will never be able to cure my daughter.  Emanuel Syndrome is not like cancer where you can have miraculous recoveries; you don’t go to bed one night with an extra chromosome and wake up the next morning without it.  And if I allow myself to be completely honest, I am beyond angry at God.  For those of you who are in doubt Emanuel Syndrome sucks.  There is not a silver lining in the clouds.  EVERYTHING about it sucks.  Please do not get me wrong, I love my daughter and there will not be a day that goes by that I don’t love my daughter and am thankful she is in my life.  But I will never be thankful for Emanuel Syndrome.  I will never feel like this is the life I am supposed to lead.  And I will never get over the hurt.  There is no healing for my heart because it will always ache for my child.

I don’t say these things to people and even now I am wondering what the fallout will be.  My family and even my husband think I should be positive.  In fact, I believe that my family thinks I have it easy because my husband works so hard for us, such long hours, and I get to stay home with our daughter.  So for those of you that don’t live my life, let me give you a glimpse.  Each day (even the good ones) end in physical and emotional exhaustion.  The physical is pretty self explanatory with all the therapy I do with my child, but the emotional is harder to see or understand.  Because I am my daughter’s primary caregiver, if something happens to her or if she fails to learn a new skill I feel like a failure as a mother.  If I don’t keep my house up to meet my husband’s desired cleanliness I feel like a failure as a wife.  As soon as my daughter’s temperature rises above 99 degrees I worry that she is going to have a seizure.  Because my husband has a job that requires him to travel I am alone with her most nights.  I have insomnia and the only way I am able to get any amount of sleep is if I take medication.  However, I can’t take the dosage I need because then I might not wake up if she needs me.  On the rare occasions when I absolutely have to because I can’t function anymore I feel so guilty when I wake up in the middle of the night and she is crying and I can tell by how worked up she is that she has been at it for a while and I didn’t wake up to help her because I was medicated.  There is not a week that goes by that she doesn’t have at least one appointment, but most weeks it is a bare minimum of 2 with her physical therapy and occupational and speech therapy.  Her OT/ST is an hour and a half drive each way.  She has to go to the children’s hospital that is an hour away at least once a month, but most times twice either on an emergency basis or for a scheduled test/procedure.  This is in addition to all of her well baby and sick appointments to the pediatrician and the other routine specialists appointments

Someone told me once that I need to not worry as much.  This of course was a person who had “normal” children.  I wonder how am I not to worry.  My daughter has a disorder that is not widely known in the medical community, which means there is no prognosis, children with ES can have years of no medical problems and then all of a sudden be hospitalized for months or die unexpectedly.  Even the most basic of emotions has been denied to me.  I remember when my daughter was in the hospital undergoing open heart surgery (at 14 months of age) saying a prayer to God and in the middle I had to stop.  My prayer started as follows, “please take this away from my child, and if you must take someone, please take me”.  However, my mind stopped right there and a terrible fear started.  I realized I couldn’t pray that prayer of any parent because the reality is if I die who would take care of my child.   Her level of care would suffer if anything happened to me or my husband.  Her development would slow, her medical care would decrease.

I’m sure some who don’t understand will not understand where this is coming from, especially since my posts on Face book and comments to family all focus on the positive.  Last night I had a conversation with another ES Mom whose daughter is almost 16 and I watched videos of how her child was as an infant and how she is now.  Without revealing personal information, let me just say that her child was just like Bella.  She was happy and loved life and learned signs and amazed her family with her ability to thrive despite her diagnosis.  The 15 year old she is now is as different as night and day.  After watching videos it hit me.  My daughter will eventually stop developing…she will eventually learn all the skills she is capable of…and the likelihood is high that either because of an illness that attacks her system, puberty, or just this awful disorder that she will lose skills she has acquired now.  Eventually we will have to look for a placement outside of our home.  I will not be capable of lifting a 120 pound adult all my life.  Her care will eventually require more than I am capable of giving by myself.  Not because I am a horrible parent, but because I am a normal person with regular physical and emotional limitations.  As I get older my body will get weaker.  Even though I know this rationally, my heart aches for that day.

Today is a bad day, not because I regret having my daughter or think less of her, but because I have been given a glimpse into what the future holds for me and my daughter.  And I must say my spirit is broken....