What defines me?

Cancer , A Dozen Kids , Life, Struggle

As a mother there has never been a more trying time in my life. Almost a year and a half ago I took Clare to her pediatrician. Turned out he wasn’t in the office that day and we seen one of his colleagues. Clare was having back and leg pain. An x-ray showed her being severely constipated. No biggie right? Well, there was a catch. Also in the x-ray we got a red flag that something was off with Clare’s hips. They suggested a specialist take a peek.

At this point I start thinking. I am reminded of the time she complained mildly of the pain from walking. It was there but somehow I had managed to brush it off. Later this would leave me feeling I had failed her. It was right in front of us the entire time after all.

Specialist time comes and Marc’s mom came with. They speak of hip displaysia and possible surgery one day! Key words there being one day! They thought that some physical therapy would greatly improve things. To be honest my worries were put to rest. It never seemed at that apt that it was a serious issue. I even thought in my mind it was one she would grow out of. They in no way told me that my daughter’s hip was popping out of place with each step. I was never informed that she needed limited activities because it was painful.

A year goes by with my daughter tolerating this pain. She just tried so hard to hide it and live with it. Finally I opened my damn eyes! I listened to Hailey come to me that her sister hurts all the time. I started tracking how often Clare was taking over the counter pain meds and anti-inflammatory meds. Now I call the doctor again.

I get us a new specialist. Not just a ortho but one specifying in hips. I drive the hour in a half again. More X-rays are done and I carry with me the disk and records from all the previous. New doctor isn’t in the same circle as old so wouldn’t have the same access to her files. I go alone with my daughter’s this time.

In walks doctor Ryan. I don’t think he even took a breath before saying physical therapy isn’t ever able to fix this. Surgery is needed now. Yes, by now he meant as soon as it was paid for she was on a table. I begun to run vigorously on the inside of my palms in circles. I had to stay calm the girls were right there. I listened intently to everything the doctor said. I asked questions over and over and over. Then I just tried to brace myself for the long road.

How do you brace yourself for that though? I mean my kids truly haven’t had any issues medically at all since they made it out the hospital at birth. Clare spent 4 months fighting as a premie but no surgery was required. She was so tough that entire time I never had much worry. Now a major surgery with a pelvis bone model in front of me showing where they will cut my child’s bone in three places is before me.

I held it together and made it home before falling apart alone. The sheer challenge of me being with Clare while the house continues was enough to instill panic through me. LEt alone the MAJOR surgery my child would be put through and not once but twice. That is right as soon as this right side recovered it would be time to go again for the left. Like seriously how can I cope.

I seen the financial burden coming. We have done so very well being on time with bills and having just a small cushion before hit with next weeks bills. Saving hasn’t happened much. I was just feeling good and ready to discuss saving when this happened. I tried to work more in the weeks prior to the surgery but it just didn’t work out to well. I found a place for all the other kiddos while I was in hospital leaving two at home to tend to the zoo.

The night before surgery I hadn’t slept in two days. I hadn’t much eaten either. I reached out for Marc to call his parent’s to drive me. I didn’t think I could safely get us to the hospital that morning at 5 am. They happily took me and Clare up. Walking in that hospital was the most frightened I had ever been. Choosing such a risk, knowing all the work that would come after. What if I wasn’t able to take good enough care of her after and there were problems? What if it gets infected? Oh the worries filled and consumed me. My anxiety had never in my life been so high. I had multiple panic attacks.

The surgery was to take about 4 hours. 4.5 hours in a phone in the waiting room rings. They call my name over to the phone. I think it is because surgery is over and I can see my baby. I am dead wrong. This is the surgeon on speaker in the room my daughter lays with her hip cut wide open. He has her under the knife and is calling because things are far more complicated than he expected.

My heart sank and the entire room must have known because the receptionist grabs my hand. She is freezing cold and it startles me. Marc’s mom has now come to my side to console me. I feel everyone’s eyes as the words come from my mouth no we have no religious beliefs not allowing. You may proceed with the bone graphs and blood she needs.

14 she is just 14 years old with bones that are not working as they should. That didn’t ever grow as they should. My mind raced with all the stress and life situations I was in during my pregnancy with Clare. That was when Keith had beat me for the last time and I had left. I was walking 5.8 miles to work everyday with 3 little’s at home. My family spent there time calling cps because I was just barely 21 4 kids in single mom and my carpet wasn’t clean enough. I was stressed to the max my pregnancy with her. I rarely put food in my mouth because I couldn’t afford too.

I had decided to place Clare for adoption. I just had no way to feed a infant. Walking across town to subway job with a nasty divorce in process. ( his family loaded and him a 9,000 lawyer.) He didn’t want Clare at all. Swore it wasn’t his baby. But that was the catch he wouldn’t sign adoption because he said it wasn’t his baby. So that stalled the process. When Clare was born early and not able to have dna done because they didn’t think she was stable the adoption process was stalled. The parent’s didn’t want to see Clare without Keith signing and he said it wasn’t his. So I couldn’t leave my little girl in a hospital fighting for her life thinking exactly what I had my entire life. That she had no one. I didn’t name Clare they had. They were suppose to be her parent’s but they left her there alone. For far to long. I started to find a way to see my little girl. Even though she was an hour and a half away then too.

A month went by without adoptive couple there. By the time dna was done and keith was dad and he was ready to sign. I had backed out. They weren’t at her side for that fight and that didn’t set easy with me. It took a fight for me to keep my daughter after that. The fight of my life! Cps came often and at one point I had no custody. I didn’t stop fighting though not till she was home. Not till I learned to be the mom she needed me to be.

Anyway when surgery was over and Clare was allowed to her room and recovery. I never left her. All that guilt of the first hospital stay rushed back. I thought of her fighting then alone. I vowed she wouldn’t ever go through that again way back when she couldn’t even open her eyes. I kept my vow. Clare made it through surgery like the fighter she always has been!

Her care in the hospital was my top priority and now is mine here since she is home. She is 8 days out on surgery now. We go back to the hospital and see her progress next week. Everything at home has went really well. She is the toughest little girl you will ever meet.

The financial burden hit as hard as I thought it would. It got tight and still is a bit. More trips up to the hospital and more medications to be purchased. We will survive it though. I think after Clare gets to where she can get herself to the bathroom that will be the time I move forward at working a steady income.

Clare does have a wish list of things she would like to do from her chair. Not walking for 12 weeks is so boring she says!Clare Surgery Wish List Items

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My own doctor called and treatment was to start again the 5th. I won’t be going and another doctor will no longer be mine. Missing the last apt they allow for me to remain a patient. Crazy as it sounds I was ready to be back on hormone treatment. It sucked but it was saving my life. My relationship doesn’t seem like it would survive that now though.

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